# GME/NME



## Furbaby's Mommie (Jul 10, 2004)

First let me say to those that may be new enough here that they aren't familiar with Frosty or me.........I don't have any personal experience with these diseases. I'm just one of the many of us who have a Maltese I love more than any dog I've ever known, and have had to stand by while msmagnolia and her family suffered with their Sassy as she gave up her life to this disease.



Now Marco who also died and maybe Macy, and several others have come forward and said they have had Malts who died with the disease. Those are all just on this forum! and in a short period of time! How many others have or will give up their lives to this horrible thing before someone figures out what is happening and why?



What is very disturbing to me, as someone who will want another Malt baby, is that we aren't hearing about this disease in the Maltese community. We should be seeing articles reporting it, research and statistic published. As msmagnolia found when researching it for Sassy---it is usually mentioned in vet school articles as a Pug disease. Is anyone keeping tract of the Maltese who have died from it? Couldn't there just POSSIBLY be some kind of connect?? be it genetics, environment, vaccinations (maybe the manufacturer of the vaccine was the same??) food used, pesticides or herbicides exposed to, illnesses they each had before GME.........



The more data collected the more possibility there is something in common. We had a good conversation going in another thread I started about this last February. It is worth rereading, or if you are new here reading now. At the time I was thinking the American Maltese Assoc. (AMA) should be the ones who would get the ball rolling. It doesn't have to be them. We should all help with any information we can contribute. There needs to be a data bank for this kind of information. If there is anyone who knows of an interested, or better yet involved, vet school or veterinary researcher of GME/NME can you approach them to see if there is such a data collection for GME?



Here is the link to our very good previous discussion: February AMA Maltese Health Discussion


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## k/c mom (Oct 9, 2004)

Oh, Dee, I swear I was going to start a thread with this info myself. I guess "great minds think alike"!!









I was thinking that we all need to write the AMA and they need to get on the ball regarding this issue. I see on other breed association's sites, all sorts of information. Photos of champions, etc. No offense to anyone who may be involved in the site, but the AMA site is pretty "cold". It has very little, if any, useful information except for a list of their members. AMA Web Site

SO, the fact that there is little info shared by the AMA now, I guess it would be a total long shot for them to all of a sudden become advocates for finding a cause and cure for GME and NME. So, where do we go? I'm all for doing something but I just don't know what to do!!

Besides Sassy and Marco, we have Cathy and Kathleen and Jackie and Herb Cumbie who have reported losing Malts to those diseases. My heart goes out to all of you.









Guys.... what can we do about this!!???!!!??? [attachment=8498:attachment]


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## jmm (Nov 23, 2004)

Getting a univeristy to do research on something like this requires money. That said, you may well find a vet who has published on it in the past that would be interested in collecting pedigrees and case histories. I found somebody like that for my liver dogs and was happy to contribute. 

I highly doubt the AMA will do much of anything about health issues in the near future. The club is a mess right now. 

However, I've brought up with OFA starting a database for Maltese bile acid results which is one step towards improving the health of the breed. Hopefully the people they talk to will be supportive of it and it will get moving eventually. Breeders are starting to have more of an interest in this and I have to give a lot of credit to Tonia Holibaugh for being open about testing her dogs and putting the word out that she's doing it. 

Something to look at is HEART, the Havanese breed health organization. This is a non-profit that was formed separately from the breed club to help support research for breed-related health problems. If there was enough interest, a group like that would be great for the breed.


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## msmagnolia (Sep 8, 2004)

There is also Anne25 whose gorgeous maltese, Aron, died this spring. She only posted once but I kept in touch with her. Also we've had at least one lurker who has not made a post but wrote to Jaimie and me to get info for a friend. She had personal knowledge of a maltese that died of NME at 13 months. The littermate died at 2 years 9 months of the same disease - my worst nightmare for Sadie.....

One breeder that I spoke with had a dog that died of either NME or GME. Hope's breeder hasn't had personal experience with it, but she was very interested in talking with me about Sassy's ordeal. She indicated that breeders are realizing that it is out there. She has some very interesting ideas about it. 

Unfortunately I fear that the incidence will rise dramatically before the Maltese community as a whole owns up to the problem and takes steps to change things. 

Cathy is doing the best that she possibly can to keep records of the maltese that died and obtain their pedigrees.....We are just a small segment of the entire group.....but at least we are making an effort!!


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## k/c mom (Oct 9, 2004)

> There is also Anne25 whose gorgeous maltese, Aron, died this spring. She only posted once but I kept in touch with her. Also we've had at least one lurker who has not made a post but wrote to Jaimie and me to get info for a friend. She had personal knowledge of a maltese that died of NME at 13 months. The littermate died at 2 years 9 months of the same disease - my worst nightmare for Sadie.....
> 
> One breeder that I spoke with had a dog that died of either NME or GME. Hope's breeder hasn't had personal experience with it, but she was very interested in talking with me about Sassy's ordeal. She indicated that breeders are realizing that it is out there. She has some very interesting ideas about it.
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Gosh, I didn't know about Anne25's Aron. I saw her post to you about Sassy and at that time her Malt was doing well with the disease. I am so very sorry to hear that he didn't make it either. Susan, do you or anyone else, know of ANY Malt that has lived as long as even two years with GME?


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## msmagnolia (Sep 8, 2004)

There is a 10 year old Maltese named Hugo who is on the GME Dogs Board on Yahoo Boards. His owner, Alex, has kept him alive for over a year and he is doing pretty well. He has GME, not NME. Dr. Sisson is having really great success treating GME but it seems to be working in larger dogs than Maltese. 

GMEDogs is a good site. I think you can read there without joining. Here is the link....hope it works
http://groups.yahoo.com/group/GMEDogs/

Right now there is a Coton who is in remission. Also taking treatment are a min-pin, dobie, doxie


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## Furbaby's Mommie (Jul 10, 2004)

> There is also Anne25 whose gorgeous maltese, Aron, died this spring. She only posted once but I kept in touch with her. Also we've had at least one lurker who has not made a post but wrote to Jaimie and me to get info for a friend. She had personal knowledge of a maltese that died of NME at 13 months. The littermate died at 2 years 9 months of the same disease - my worst nightmare for Sadie.....
> 
> One breeder that I spoke with had a dog that died of either NME or GME. Hope's breeder hasn't had personal experience with it, but she was very interested in talking with me about Sassy's ordeal. She indicated that breeders are realizing that it is out there. She has some very interesting ideas about it.
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Oh thank you Susan. I knew you of course were active about this, but I'm so glad to hear (from JMM above) that also Tonia and some other breeders are becoming more aware.



Who is Cathy? Sorry I don't know everyone's name. Do you think it will eventually be possible for future owners to check a pedigree for problems before purchasing a puppy? If not, trusting your breeder and learning all we can about the breeding lines becomes even more necessary.


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## msmagnolia (Sep 8, 2004)

Dee,
Cathy (thats also her SM name) joined here in the winter just after she lost her beautiful young maltese, Sophie. Sophies breeder has been very supportive, as have Sassy's breeders, and Cathy is sort of our unofficial record keeper. I wrote a synopsis of Sassy's illness soon after she died - when I noticed the changes in behaviour, tests, general treatment, etc. We all (breeders, owners, and prospective owners) must be aware. Until they know what causes this problem, I feel that breeders must be willing to pull dogs from their breeding programs. But which ones to they pull? Just the sire and dam? What about the grandparents. I don't know how they are going to do it. I can assure you that I never want another Maltese with this disease. In deciding to get Hope my husband says he's willing to try once more, but another problem like this and we'll be looking for a different breed.

Just so you know the Pug society has really gotten behind some research. I believe it is Texas A&M that is begging owners to send their dogs brains to them for research and I think that somehow the Pug Society is helping to fund this research. I guess it got the point when they just had to do something.


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## k/c mom (Oct 9, 2004)

> Something to look at is HEART, the Havanese breed health organization. *This is a non-profit that was formed separately from the breed club to help support research for breed-related health problems*. If there was enough interest, a group like that would be great for the breed.[/B]


Guys, I wish we could do something like this. Maybe Jaimie could be our official organization's vet. And charmypoo could design a great Web site!! 

This sounds like what we need to do. But we need a "champion"... someone to head it up....


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## Furbaby's Mommie (Jul 10, 2004)

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Wouldn't that be wonderful if we could do something like that! 



Re: the Havanese website

I was looking at Havanese as a breed almost a year ago and seeing their organization's activism on the health of their breeding dogs is what started me thinking about the lack of activity in that dept. we have from the AMA. I started checking other breed organization and was more appalled at AMA the more I looked at others.


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## Furbabymom (Dec 17, 2004)

Please keep us updated. I am so sorry for all those Maltese mommies and daddies that lost a Maltse to either NME or GME since they are both devastating illnesses.</span></span>







> There is also Anne25 whose gorgeous maltese, Aron, died this spring. She only posted once but I kept in touch with her. Also we've had at least one lurker who has not made a post but wrote to Jaimie and me to get info for a friend. She had personal knowledge of a maltese that died of NME at 13 months. The littermate died at 2 years 9 months of the same disease - my worst nightmare for Sadie.....
> 
> One breeder that I spoke with had a dog that died of either NME or GME. Hope's breeder hasn't had personal experience with it, but she was very interested in talking with me about Sassy's ordeal. She indicated that breeders are realizing that it is out there. She has some very interesting ideas about it.
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## Edwinna (Apr 21, 2006)

Does anyone know of the best place to get info on GME? As a new breeder I am very interested in learning all that I can to promote healthy puppies. I had never heard of this disease until the last few months - it is so scary.


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## msmagnolia (Sep 8, 2004)

> Does anyone know of the best place to get info on GME? As a new breeder I am very interested in learning all that I can to promote healthy puppies. I had never heard of this disease until the last few months - it is so scary.[/B]


Hi Edwinna......you should follow the link that I posted for the GMEDogs forum on yahoo. In addition to the forum, they have some information about the disease. Otherwise do a search on Google or Yahoo and type in: GME and dogs OR GME and Maltese OR NME and Maltese OR Pug Dog Encephilitis

Unfortunately you'll find all sorts of information and none of it is good. The doctors are hesitant to say there is a genetic link, but since it is showing up with more frequency in certain breeds they are privately telling us that there has to be a genetic problem. There are some neurologists who have made it their life's work to try and help sufferers of GME. Hopefully some progress will be made in the future.....


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## Edwinna (Apr 21, 2006)

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Thanks for the help. I will do some research!


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## KathleensMaltese (Sep 5, 2004)

> There is also Anne25 whose gorgeous maltese, Aron, died this spring. She only posted once but I kept in touch with her. Also we've had at least one lurker who has not made a post but wrote to Jaimie and me to get info for a friend. She had personal knowledge of a maltese that died of NME at 13 months. The littermate died at 2 years 9 months of the same disease - my worst nightmare for Sadie.....
> 
> One breeder that I spoke with had a dog that died of either NME or GME. Hope's breeder hasn't had personal experience with it, but she was very interested in talking with me about Sassy's ordeal. She indicated that breeders are realizing that it is out there. She has some very interesting ideas about it.
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Im here To help Susan........Im not willing to sit back without making some kind of effort on behalf of our Malts that have been take by this horriffic disease. I just dont know what direction to go in. How about some sort of questionare for those that have lost their babies> Foods,meds, water source (distilled, spring,well water etc) Immunizations lot #. Im not great at writing or Id have already emailed universities asking for research, or if there is any research going on, or has any been done. From all that I have read there is just no definate known cause. How can that be in the year 2006?!...........also,Id like to know the percentage of Maltese that "May" get this. More common now? How many in 2005?....how many in 2004? etc!

So many questions,

Muffett (pictured) lived two weeks from the onset of symptoms, she passed 6/15.
Id like to ba an active part in helping here....

Kathy


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## msmagnolia (Sep 8, 2004)

Here are a few links from the Pug organizations:

http://www.pugvillage.com/pde_first.htm

Look at this site and notice how they are organizing and trying to do something proactive. Spend some time here and read some of the heartbreaking stories and see if they sound familiar????
http://sissylala.com/pde/


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## Furbaby's Mommie (Jul 10, 2004)

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I'm am heartbroken that so many of you have suffered through this devastating thing with your precious white angels. I am, however, starting to feel some hope after several of you have posted or PM'd each other saying you have experience it and want to push to get records going and research done. I feel somewhat better about the future, knowing there are some wonderful breeders and pet owners who will DO something instead of hiding or ignoring the problem. It has gotten to a truly frightening situation.



Some of the names I've seen who are active and wanting to help are---Kathleen, Cathy, Susan (msmagnolia), and Susan (Furbabymom), Herb (JustMe), JMM, Anne25, and Edwinna--I'm sure that's not all of you! (Please forgive my Senior moments







) I know there are some breeders (like HappyB) who are actively involved in pushing for better health records and testing.



God bless those helping hands and hearts. Although we always must pray for help, "God helps those who help themselves."


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## k/c mom (Oct 9, 2004)

I want to help, too. I just don't know where to begin. We need a project manager, for lack of a better term, to put together all of the tasks involved in replicating the Pug site and getting research started, etc. This type of thing is difficult to do when the parties involved are face to face and seems way more so trying to do it like this! 

I was thinking that we could all meet at the 2007 Maltese Specialty in New Jersey but that is more than a year away. And that is just too long to wait. I would be willing to travel to meet with a committee to try to get this started.....

I bet we could recruit Charm to do the site. But we need to figure out what to put on it! How and where do we begin???


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## msmagnolia (Sep 8, 2004)

> Some of the names I've seen who are active and wanting to help are---Kathleen, Cathy, Susan (msmagnolia), and Susan (Furbabymom), Herb (JustMe), JMM, Anne25, and Edwinna--I'm sure that's not all of you! (Please forgive my Senior moments
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This is what I know for sure....the following posters (past and present) who have owned maltese or maltese mixes that died of a form of GME/NME are: KathleensMaltese, Cathy, MsMagnolia, JustMe, Anne25, Marco, JMM. We know that Sanvean's pup Macy is in the diagnosis phase and that GME has been mentioned. We also know there is 10 year old Malt being treated for GME and we are personally aware of 2 littermates who have died. Others are beginning to come forward as well. I believe that Cathy knows of some other deaths on another board. Within the past week on MO there has been a dog that died after suffering for about a week. They described it as nervous encephalitis or something like that, but the symptoms sounded identical. 

Herb and Anne don't post here much so I don't know whether they will be interested in helping. I'm also not sure if Marco's owner is still posting. 

I am not willing to be the head, simply because I am getting ready to begin building a new house and don't think I can obligate myself in a leadership role. However, to try and get the ball rolling I am willing to contact the Pug organization and the doctors that are doing research to ask them if they have any suggestions on getting a similar project underway. I will also write to Dr. Sisson in Boston and see if he knows of any research that is being currently conducted specifically related to Maltese. It seems to me that we will have to find a vet school resident or faculty member who is willing to take on a big project. The funding can come from the masses, but it seems that someone in a professional capacity is going to have to be willing to take on a research project long term. I'm not sure how one goes about this. I feel some frustration because a maltese organization such as AMA SHOULD really be the ones to start this. Their name alone would give some clout. Should we write to them, or should I send some letters and get some info first?

I am going to Megan's house tomorrow or Saturday to paint bedrooms. She has not had her cable installed (WED) so I will not be able to do much about this until I get back. It is probably best to wait until after the holiday weekend so that emails won't get put aside. 

If anyone else has any ideas on how we start..........


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## Furbaby's Mommie (Jul 10, 2004)

*Does anyone know these 3 people? Since they may not read this. If someone could let them know they might want to help.*

Quote Msmagnolia:
Herb and Anne don't post here much so I don't know whether they will be interested in helping. I'm also not sure if Marco's owner is still posting. 
<span style="color:#cc0000">............. I am willing to contact the Pug organization and the doctors that are doing research <span style="color:#000000"><span style="font-family:Arial">*(if they are, we need to have a way to keep abreast of what they are doing. What works for Pugs probably works for Malts)* </span></span>to ask them if they have any suggestions on getting a similar project underway. I will also write to Dr. Sisson in Boston and see if he knows of any research that is being currently conducted specifically related to Maltese. It seems to me that we will have to find a vet school resident or faculty member who is willing to take on a big project. The funding can come from the masses, <span style="color:#000000"><span style="font-family:Arial">*(what about grants, do vets get grants for study?)* </span></span>but it seems that someone in a professional capacity is going to have to be willing to take on a research project long term. I'm not sure how one goes about this. I feel some frustration because a maltese organization such as AMA SHOULD really be the ones to start this. Their name alone would give some clout. Should we write to them, or should I send some letters and get some info first?</span>

[/QUOTE] 

Susan--It would be great if you can contact Dr. Sisson and maybe we could send copies of our relevant conversations or maybe even have someone write a letter or something like a petition to the AMA asking for their participation and endorsement in any awareness effort, and we could all e-sign it..........AMA (since it is our only national Maltese org.) needs more than anything to warn members and prospective purchasers of the disease and lend their name for that purpose. There is no way to test for this disease at present, but there needs to be more effort on their part to push breeders for testing of any *known* genetic problems, and for anyone affected to have a central reporting agency for any experience with GME/NME diseases.



Definitely someone in a professional capacity needs to be in charge of a long term project. Maybe Jaimie knows someone at LSU vet school who could get a grant to study this disease. Is there anything like a doctoral thesis done by graduating vet students? If so GME/NME could be their paper. It probably would not be exclusive to the Maltese breed, but that doesn't matter. A cause and cure matters.



I think we are getting on to something here! I've got goose bumps!!







I wish I was a vet or in some capacity were I could start looking for grants or financial help to get a study going!! but No.







I don't even have the computer skill to do a website! bah-hum-bug!! but there are so many talented people in our group.







I know if we want to do something we can. We've gotten things done in a flash around here before.


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## jude'n'jools (Apr 6, 2006)

I think it's great what you guys are doing







I pm'd Marcocarly, so hopefully we will here otherwise soon.


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## Brinkley & Neyland's Mom (Jun 14, 2004)

> Muffett (pictured) lived two weeks from the onset of symptoms, she passed 6/15.
> Id like to ba an active part in helping here....
> 
> Kathy[/B]










OMG! TWO WEEKS FROM THE ONSET?!








Bless your heart!!! I can't even imagine!!!! You must have felt completely helpless and frustrated!
And someone posted that one on MO only made it one week?!







SO Sad!!!!!
My heart goes out to each and every one of you and I hope and pray that the Lord will enable the right combination of people to organize themselves to help in the research of this dreaded disease that is stealing our furbabies.


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## jude'n'jools (Apr 6, 2006)

Ok! Marcocarly PM'd me. He does not have the results back yet from post mortem & will send them when he gets them.


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## Furbaby's Mommie (Jul 10, 2004)

> Ok! Marcocarly PM'd me. He does not have the results back yet from post mortem & will send them when he gets them.[/B]


 

Thanks for contacting Marco!


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## msmagnolia (Sep 8, 2004)

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Traci, It was so sad for Kathy and her family. She had posted a condolense to Sassy and something like 3 days later Muffet got sick and was gone in 2 weeks. I am realizing how extremely fortunate we were to have had Sassy long enough to come to terms with the disease. People like Cathy, Kathy, Marco's owner barely even understood what the disease was before the dogs were gone. I don't want to scare anyone, but this is something that we must learn about and we just can't wait.......Pass the word for people to come and read this thread and get on board with us.


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## jude'n'jools (Apr 6, 2006)

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Susan & Dee

Iam sure there is alot of us here that want to help, but how?

I for one would help, i think the suggestion for a sort of petition for AMA would be a good start, get Joe to PIN it & everyone could put their name to it. This itself would take a number of weeks for people to sign.

Just a thought.


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## k/c mom (Oct 9, 2004)

I just thought of something... as a way to learn more... would it be feasible for each of us to contact our vets or speak to them next time we're there and find out their experience with GME/NME and get their thoughts? Getting info such as how many Malts has he seen with it; age; etc. Perhaps someone could devise a questionnaire to help guide us in asking the right questions.


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## jude'n'jools (Apr 6, 2006)

> I just thought of something... as a way to learn more... would it be feasible for each of us to contact our vets or speak to them next time we're there and find out their experience with GME/NME and get their thoughts? Getting info such as how many Malts has he seen with it; age; etc. Perhaps someone could devise a questionnaire to help guide us in asking the right questions.[/B]



Good idea Sher, it would be interesting to see just how many of our vets have dealings with it.


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## thelittlepet (Apr 18, 2006)

I am horrified to even think about it. But I know that the more discussion there is on it the more likely we are to never lose a furbaby to it. I will talk to my vet to get her experience and to my best friend who is also a vet. Neither have been out of school long, one from UF and one from NC State so I will ask them if they know of a professor wanting a research project. This could certainly be one, I know that I would contribute to any fund drive or fundraising for it, I can't imagine life without the love of a maltese. 
Aimee


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## KathleensMaltese (Sep 5, 2004)

I just thought of something... as a way to learn more... would it be feasible for each of us to contact our vets or speak to them next time we're there and find out their experience with GME/NME and get their thoughts? Getting info such as how many Malts has he seen with it; age; etc. Perhaps someone could devise a questionnaire to help guide us in asking the right questions.

I can answer this question from our vet. Once she had gotten the results from Redbank Vet Hospital, she called up there to speak directly with the neurologist Dr. Glass. She later called to say in all of her 17years she had never seen this in a Maltese

Now I had to wonder why, she had never seen this.
Was it because of the cost the pet owner encounters with seeing a specialist, to further persue a definitive diag.
Was it lack of knowledge due to the infrequency of seeing such cases
I just dunno

When I spoke to the neurologist, I had asked if he had seen an increase in this amoung Maltese....his answer was ...no. When I asked if there was anything I could have done differently to prevent this he said... no
When I asked if it was genetic...he said ....no More "breed specific" <which I still dont understand. But I guess there is alot about this that remains a mystery


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## Furbaby's Mommie (Jul 10, 2004)

I have connected the president of the Pacific Rim Maltese Club. She was interested and positive. She will get back to me with what she finds out.



Anyone know an offical of any of the area clubs? If AMA isn't proactive, maybe area clubs would step up...


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## 3Maltmom (May 23, 2005)

> I have connected the president of the Pacific Rim Maltese Club. She was interested and positive. She will get back to me with what she finds out.
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I will also bring it to Mary Palmer, and Northcentral Maltese Rescue's, attention.


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## msmagnolia (Sep 8, 2004)

Sher, I believe it would be interesting for us to ask our vets what they know about the diseases. Don't be surprised to find that they know very little. The practice that I use has 2 vets. Once is about my age and the other is 2 years out of vet school. The older guy had never seen GME/NME but had heard of it. The younger vet had seen one case in vet school. The vet that Jaimie took Sassy to in Baton Rouge had not seen it in 12 years of practice (I think this is right). If this is the case with everyone's vet, then perhaps it is not as common as it appears to be here in this forum and that would be a positive. On the negative side, when I informed Dr. Sisson, the neurologist that treated Sassy, of her death, he sent me a very nice letter and contained in that letter he mentioned that Maltese were one of about three breeds that were apparently predisposed to these diseases. If Yorkies, Pugs, and Maltese are predisposed that would seem to indicated a genetic component so I don't understand why there is reluctance on the part of the medical community to say so. I don't have the letter from Dr. Sisson on this computer but when I get back to Gulfport in a few weeks I will post his comments as they relate Maltese dogs in general. That is the scary part to me! The other concern is that doctors seem to call the same problem by various names. It makes research very difficult. 

I have an administrative question.....should we continue this discussion within this thread or should we ask Joe to give us blog space or something where we could post the letters that we send and their responses. Also web sites with information could be posted. Kathy sent me a very interesting link last night about some studies that had been done in Australia on GME. The money comes from the registration of dogs and they use this income for specific research and studies. It was very interesting reading, tho a little technical for people like me with no medical background.

I continue to be encouraged by the people who are willing to engage in discussion and show their concern. Good for us all!


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## Furbabymom (Dec 17, 2004)

Again sincere sympathy for anyone who had to deal with this awful disease. I feel it is genetic just like I feel the Pug type is genetic and that is why we are seeing more and more of it.</span>









> I just thought of something... as a way to learn more... would it be feasible for each of us to contact our vets or speak to them next time we're there and find out their experience with GME/NME and get their thoughts? Getting info such as how many Malts has he seen with it; age; etc. Perhaps someone could devise a questionnaire to help guide us in asking the right questions.
> 
> I can answer this question from our vet. Once she had gotten the results from Redbank Vet Hospital, she called up there to speak directly with the neurologist Dr. Glass. She later called to say in all of her 17years she had never seen this in a Maltese
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## Furbaby's Mommie (Jul 10, 2004)

Susan, I think anywhere we could store or keep track of everything would be great, here or elsewhere. Since so many of us are here it would be nice to do it in something like a blog here.


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## k/c mom (Oct 9, 2004)

> Susan, I think anywhere we could store or keep track of everything would be great, here or elsewhere. Since so many of us are here it would be nice to do it in something like a blog here.[/B]


Hmmmm, since you mention blog... perhaps we should start one on Blogger. It is free and it is picked up by the search engines so someone searching for info could have access to it. I believe blogs can be set up for multiple posters... everyone would just need the login and password.


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## dr.jaimie (Mar 23, 2004)

if u guys need ne thing from me let me know....as far as my own experience..the years i worked at a vet as a vet assistant we never saw a case of GME..that was 1997-2003 in vet school I saw 2 cases..one in a yorkie and the other was Sassy.


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## Cathy (Mar 19, 2006)

I've just read through this thread and am so encouraged that so many on this site care about these 2 dseases that seem to be taking so many of our Maltese. I really like the idea of having a standardized questionnaire for those who have lost their kidz to these diseases. I'd be willing to develop one and then post it for comments and ideas. For now, I've been collecting info in more of a detailed story form. Susan and I have both done this. It would be great if others could do this too while the info is fresh in your minds. I actually did a day by day diary from day 1 through day 9 when she died. I did it daily so I wouldn't forget anything. Of course, when I started it I had no idea that Sophie had anything fatal.

I've also been collecting pedigrees. So,if any of you are willing to share I will certainly keep them confidential.

Lately, on another group there was a discussion on NME and GME. Unfortunately, only a few breeders joined in. Two were friends of mine and a tremendous support to me after Sophie passed away. During that discussion a breeder in Australia told us that there is research on GME occurring in Australia. I'll look for the post and tell you more about this later this evening.

Thank you everyone for caring!!!


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## msmagnolia (Sep 8, 2004)

This is the link that Kathy sent me last night about the Australian research:

http://www.vca.org.au/AboutVCA.asp?ID=84


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## k/c mom (Oct 9, 2004)

> This is the link that Kathy sent me last night about the Australian research:
> 
> http://www.vca.org.au/AboutVCA.asp?ID=84[/B]


That is very encouraging that they are researching it. Wonderful!!


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## jude'n'jools (Apr 6, 2006)

I have emailed The Royal Veterinary College of London & Glasgow Vet University to see if they have done any studies. We will see if we get any response!


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## Sanvean (May 17, 2004)

As you guys may have read in the other thread, it looks like Macy probably does not have GME, but I still want to help out in any way I can.


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## Furbabymom (Dec 17, 2004)

Maybe VCA.Org. in Australia will be willing to do a combined study on GME and NME with the USA by having a sub group formed in the USA if you contact them? By the way, Cathy thank you for sharing the link with Susan (Sassy's mom) and Susan, thank you for sharing the link with all of us at Spoiled Maltese.



Here is what the VCA site says on their grants and study so far: (they feel is is genetic and I do also)



<span style="font-family:Comic">*5(In progress.)



-------------------------------------------------

msmagnolia (Susan) wrote "This is the link that Kathy sent me last night about the Australian research:"

http://www.vca.org.au/AboutVCA.asp?ID=84*


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## Cathy (Mar 19, 2006)

-------------------------------------------------

msmagnolia (Susan) wrote "This is the link that Kathy sent me last night about the Australian research:"


Just to give credit where credit is due......I believe that it was Katheeen who gave Susan the link. 

Cathy


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## Furbabymom (Dec 17, 2004)

Thank you Cathy for letting me know that is was Kathleen that gave the link. Kathleen, Susan and you are so informative of these two illnesses since all three of you have suffered tragic losses and we appreciate how you want to help the breed to prevent this illness from taking another Maltese. Thank you.









> -------------------------------------------------
> 
> msmagnolia (Susan) wrote "This is the link that Kathy sent me last night about the Australian research:"
> 
> ...


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## lorraine (Jun 24, 2006)

> I have emailed The Royal Veterinary College of London & Glasgow Vet University to see if they have done any studies. We will see if we get any response![/B]


Please count me in. 

If there is no luck from the University of London College, I live relatively nearby and will gladly call on them for an eye-ball discussion. I live even nearer to the Royal College of Veterinary Surgeons, so will be happy to do likewise.

I could come at this from a different direction. I used to run a UK (people) charity (not-for-profit organisation), so I am quite OK discussing UK Charity Law and use (or lack of use) of donations and other charitable income and, I particularly enjoy lobbying Members of Parliament









But I would need all the back-up available to be able to cite known cases in the UK. They may even be persuaded to take note of US cases, now that the new-ish Pet Passport Scheme allows for import from a number of non-European countries including the USA, without quarantine - on (foreign) Vet Certification only. I don't *think* that certification covers GME/NME/Hydrocephalus/encephalitis in specifics or generalities. BUT, if it did... I wonder if that would bring some vested-interest animal health issues out into the open.









Heck, I might even threaten to withdraw my, admittedly modest, annual donations from both of them. That'll worry them. Yeah right









UK Charity Commission Register Entries for:
Royal College of Veterinary Surgeons Charitable Trust
and
Royal Veterinary College Animal Care Trust

Show that neither charity spends all its income (which they are obliged to do by law unless there are compelling reasons not to) and both profess to make grants, support research etc. Regrettably, both entries show they are a bit tardy sending in their Annual Reports and Accounts. So we should not expect miracles of speedy resolution here - they will need quite a few bee-stings to get up off the gr-ass, put the picnic gear away and get on with something new, important, useful <insert any number of words here if you want to get them off your chest>









Let me know if I can help.


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## jude'n'jools (Apr 6, 2006)

> > index.php?act=findpost&pid=214208
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Happy to have you on board









You certainly know what your talking about more than me, all help is welcome.

Lorraine - i think this would be the guy to speak to in London, he has done research on GME, probably relating to treatment!

Giunio Cherubini


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## Furbaby's Mommie (Jul 10, 2004)

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Lorraine, You sound like a god-send! Thank you for any help you can give bringing this the attention it deserves. This is a gobal problem, and we are a worldwide forum. All I can say is Marvelous, Marvelous!



Since we don't as yet have anything organized I don't know where to begin. We are in a long Holiday (4th of July) weekend at the moment, and many are gone on holiday which does not end until July 5th. If you haven't already heard for Susan (msmagnolia) whose 2 yr. old Malt recently passed you probably will soon.

Thank you, thank you!


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## lorraine (Jun 24, 2006)

> Lorraine - i think this would be the guy to speak to in London, he has done research on GME, probably relating to treatment!
> Giunio Cherubini[/B]


Wey, hey







Tall, dark, handsome and Italian. I'll try to force myself to meet him








Best to wait until you receive a response to your email though. If it's anything like the (people) medical profession here, they do get a bit "squiffy" (technical term) when one of them contradicts another in any way.

*Frosty's Mom*
Maltese dogs are the god-send. I am just an annoying, interfering, persistent "old biddy" (another technical term) who will not take "No" for an answer.









Edit: forgot to say "Happy 4th July" to all you err... people who live beyond the Western Ocean.


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## Furbaby's Mommie (Jul 10, 2004)

Quote: Maltese dogs are the god-send. I am just an annoying, interfering, persistent "old biddy" (another technical term) who will not take "No" for an answer.











Lorraine--That's a GOOD thing!


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## jude'n'jools (Apr 6, 2006)

I recieved an email back from Glasgow Vet Uni, here is a copy:


*Dear Ms Elaine Balfour,



I have been asked to provide details of our currently research into GME. We currently have a study in progress into GME assessing blood and cerebrospinal fluid markers for GME in order to facilitate making a diagnosis and in order to monitor effective treatment. As you will know the definitive diagnosis of GME requires microscopic examination of brain tissue, although a presumptive diagnosis can be made on the basis of MRI and cerebrospinal fluid analysis and we are hoping to find a protein marker that will make this presumptive diagnosis more accurate (and thereby avoid the inadvertent treatment of dogs that do not have GME, but rather similar conditions including lymphoma). Is also difficult to know when treatment is effective in controlling the disease and when to reduce or fully withdraw treatment without the risk of a relapse of the GME and we are hoping to type the protein markers associated with a good outcome and with full remission, so that owners and veterinary surgeons can make a more informed decision about whether to treat their animal and when the treatment should be tapered down.



The study is currently being funded by a grant from the University of Glasgow Faculty of Veterinary Medicine Clinical Research Fund.



I hope this is of use to you,

Jacques Penderis



-----------------------------------------------------------------------------------------

Dr Jacques Penderis BVSc MVM PhD CertVR DipECVN MRCVS

RCVS and European Recognised Specialist in Veterinary Neurology

Senior Lecturer in Veterinary Neurology



Faculty of Veterinary Medicine

University of Glasgow

Bearsden Road, Glasgow, G61 1QH

Telephone: +(44) 0141 3305738 (office) 3305848 (reception)

Fax: +(44) 0141 330 3663

Email: [email protected]

-----------------------------------------------------------------------------------------

*


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## Furbaby's Mommie (Jul 10, 2004)

Elaine, That's great news. I'm so excited there is ongoing research there. Thank you so much for that contact and for posting it.


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## jude'n'jools (Apr 6, 2006)

> Elaine, That's great news. I'm so excited there is ongoing research there. Thank you so much for that contact and for posting it.
> 
> 
> 
> ...


Dee, i dont think it helps much just now but i think that the fact we got a reply is positive news with research currently being done. What i really wanted to know was if their was any research being done on how dogs get GME but maybe we could get lorraine to pose this with the London vets!


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## lorraine (Jun 24, 2006)

> > index.php?act=findpost&pid=215719
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yeah... well the London Vets do seem to be a bit slow here, doh! I assume there is no answer to your e-mail to the London Vet College yet, Elaine. As I mentioned before, it may be best to wait a bit just in case they do graciously favour you with a response. Because no individual is likely to take a different line to what is in their official response. 
Sadly, I have bitter experience of "medical" ethics: I'm currently fighting a medical negligence case over the death of my husband. Still, that experience should make me more like a Rottweiler, when(if) I get to talk to someone face-to-face


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## jude'n'jools (Apr 6, 2006)

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Nope, no response yet Lorraine. It is early days though but i think setting a Rotti loose would be a great idea


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## lorraine (Jun 24, 2006)

> Nope, no response yet Lorraine. It is early days though but i think setting a Rotti loose would be a great idea
> 
> 
> 
> ...


True. But he may have to be a bit older and slightly less cuddly than this one.


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## jude'n'jools (Apr 6, 2006)

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Yes, that sure is a cutie!


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## k/c mom (Oct 9, 2004)

Elaine, thank you for posting that response. That's great that at least GME is getting attention.....


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## lorraine (Jun 24, 2006)

Hello - another update.

I called on my (new-found) Vet this morning to discuss Maltese dogs in general and how she would treat mine. She answered that very thoroughly. I then threw in a casual comment about what you are all trying to get off the ground. Her eyes lit up but she felt she could not help directly and asked to remain anonymous. She gave as much information as she felt able at this time - bearing in mind she did not know me. So I'll work on that.









She did not mention this, but from my own knowledge: 

*Professional Indemnity Insurance*
This is of the utmost importance to any Professional. Usually, it's one claim then you're out/blacklisted with all the insurers. If you can't buy more indemnity insurance you are no longer allowed to practise. My late husband was an Architect. Architects/their successors/next of kin can be held liable for their work for up to 70 years after the death of the practitioner. I'm still paying an annual insurance premium and will do for many years.

Hardly surprising, then, that Vets can be quite circumspect at attributing causes of illness to specifics i.e. breeds, genetics etc. Human nature suggests that part of them wants to do the very best they can for animals and part of them must be thinking about potential litigation from "vested-interest" organisations. If they are struck-off the register they can no longer help animals - it's a Catch-22 situation. They are happy to quote information that is already in the public domain. But a glance at several sites Googled for GME+dogs suggests the public domain stuff steers clear of specifics too.

Some statistics from the Vet:

*Prevalence of GME*
There has been a notable increase of the incidence of GME in (mainland) UK over the past few years. 
In South East London (where I live and she practises) alone there are 3 practices with confirmed GME dogs totalling 12 - all are female. Three of them are currently at the Royal College of Veterinary Surgeons - prognoses not good. None are Maltese, but there are very few Maltese in the area to her knowledge anyway. She is not aware of any of her patients having symptons. She is aware, though, that GME is spreading rapidly. For my boy's pre-purchase Vet check and 2nd vaccinations I was told to book out-of-hours appointments because, for small dogs, they always prepare a sterile operating room - just for an examination and to complete the first course of vaccinations. At booster time the little ones wait in the waiting room just like the big ones.

She has tried to get some GME information from both the Royal Veterinary College and the Royal College of Veterinary Surgeons. 

*Royal Veterinary College of London University*
This is primarily an educational institute with some teaching hospitals. There is some research.

_Obtaining (unpublished) information or research findings for public consumption._
Next to impossible - even for a practicing Vet. 

There is known to be a great deal of research into diagnosis and treatment - let's hope they continue to get grants and publish soon. Practising Vets will be the first to have access to the information and it is by no means certain it will be made public. Very little is known of GME research into cause/genetics/type. Most Vets tentatively suggest it may be more prevalent in females but have no idea why and that's as far as they will go.

_Giunio Cherubini_
Seemed to be a likely person to help. Also from their website: 
He, along with several others, has published the results of a "limited" study into GME:
Cherubini G.B., S. Platt, T.J. Anderson, C. Rusbridge, V. Lorenzo, P. Mantis, R. Cappello. Granulomatous Meningoencephalomyelitis: MRI features in 11 dogs. 

His research interests remain neurological and he is currently a member of a team considering infection and immunity. He is not one of the members of staff who have opted to be contactable. So we are reliant on something coming back in response to Elaine's email.

*Royal College of Veterinary Surgeons*
It should be appreciated this is primarily a regulatory authority and an organisation that promotes the profession. They carry out selective surgical procedures on referral from a RCVS Accredited Practice. 

Hers is an Accredited Practice and she has tried to talk to them, in a general way, about GME. Questions like "how can I prepare my premises to alleviate the potential for contagion?" but they seem to be interested only in confirmed GME referrals for surgery.

***********************************************

It is clear many countries are conducting research into diagnosis and treatment and applying the knowledge gained. It would be good if that combined knowledge could be pooled. More importantly, there now needs to be a concerted world-wide effort to bring pressure on those that can to come up with the causes. 

Don't shoot me - I'm just the messenger.








Thought I might still have a go at three local Members of Parliament, though, once my new boy is comfortable in his new home.


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## k/c mom (Oct 9, 2004)

> Hello - another update.[/B]


Lorraine, you are amazing and what an asset you are here at SM. I'm so glad you're here!!









It's interesting that your vet is wondering about protecting other dogs.... does she think it is contagious or am I misunderstanding something ??


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## jude'n'jools (Apr 6, 2006)

Thanks Lorraine, I'm thinking maybe actually writing a letter to the Nurology dept might be a good idea as they do not have a dirct email listed.


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## lorraine (Jun 24, 2006)

> Lorraine, you are amazing and what an asset you are here at SM. I'm so glad you're here!!
> 
> 
> 
> ...










aw shucks








She is being ultra-cautious and protective of the little ones. The big ones do not seem to be affected. Nobody knows (or admits to knowing) the cause(s). But "it" is spreading and quite quickly too. She cannot get advice from her professional body, so that's her way of dealing with her professional responsibilities and personal ethics. 

One of the other practices now offers home visits for the first round of vaccinations - that is cheaper for the owners than sterile op-room preparation. Sadly, in the poorer areas, the little ones have to take their chances in the waiting room with the rest.


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## Furbaby's Mommie (Jul 10, 2004)

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Lorraine, I second K/C's Mom! I get goose bumps reading your stuff. Are you a professional researcher ?


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## lorraine (Jun 24, 2006)

> Are you a professional researcher ?
> 
> 
> 
> ...


Yes :cough: :cough: or if I am forced to be brutally honest... sort of.








Quick BIO:
British Army, City of London Banker, Charity Director. To have any chance of success in these careers, you just have to be able to carry out research to cut through the gloss, then the dross, to discover the trooooof hidden beneath all the layers.









About 5 years ago I set up what was meant to be a small hobby business to keep me out of mischief in the evenings. It was web-related and part of it was to carry out research for all manner of businesses and individuals. It grew much too big so I sold out to my colleagues - now I can pick and choose.

Anyone could do it - it helps, but is not essential, to be able to read quickly and have a good memory.


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## Furbaby's Mommie (Jul 10, 2004)

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I don't know if I have those, but sometimes I do read between the lines.......


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## lorraine (Jun 24, 2006)

> ... sometimes I do read between the lines.......
> 
> 
> 
> ...


That ability has not gone un-noticed, at least not where I sit.


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## msmagnolia (Sep 8, 2004)

Lorraine,
I am thrilled to see that you are on board with our project. I am out of pocket for a few more days but welcome you with open arms. I will post more extensively once I return from Tulsa and after I have written several letters of my own.....

Susan


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## KAG (Jun 1, 2006)

My beloved Amy, aka American Beauty, died from this horror GME. I still don't know why I bother to capitalize it. She was 9 yrs old, diagnosed in February '01 and died 6 months later in August '01. I was told it could be an auto-immune disease. Another informative website is Vetinfo.com


I'll be seeing my neurologist in a few weeks because my baby Lola had a 108 degree temperature and now suffers with seizures. I'll ask him if he can help us out. I'll have to compile a list of questions so I don't forget anything. 

Whomever is going through this horror with their baby, always remember you are doing all you possibly can. I believe your baby knows that as well. 

Sincerely,
Kerry


There are 3 forms of this disease: localized, pertaining to one area of the brain. Focalized, pertaining to the eyes. Diffused, pertaining to the spinal cord and brain. Amy died from the diffused.


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## KathleensMaltese (Sep 5, 2004)

> Lorraine,
> I am thrilled to see that you are on board with our project. I am out of pocket for a few more days but welcome you with open arms. I will post more extensively once I return from Tulsa and after I have written several letters of my own.....
> 
> Susan[/B]



Im thrilled too ..........Thank You Lorraine for all you have done! Wow
I am not great with writing here







But I did find this site with all neurologist listed, Susans, Dr. Sisson whom cared for Sassy is listed and the Neuro we saw Dr. Glass. I believe most have email addresses.
I did start an email to them, but deleted it after an hour of trying to figure out just how to word everything. :/
I will admit I am just not a writer! But, I try hard








Here is the linkVeterinary Neurologist
Ive never fully learned this SM forum and its features..so if it doesnt work Ill send it via email to Susan, if she doesnt already have it.


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## KathleensMaltese (Sep 5, 2004)

> > index.php?act=findpost&pid=213317
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Actually, I think I stayed pretty well focused. I am a nurse, so my ability to function during crisis was pretty ggod. The initial "probable" diagnosis was, Epilepsy. Muffett having just turned 5 was right on the boarder with age. Younger than 5."probably epilepsy" Older than 5 it may be something quite different" The vet that do to her being a breed that lives a fairly long life she wanted to lean towards the epilepsy. Which was ok, I knew it could be treated and she should be fine with medications to control the seizures. The story is very long and involved from here with all her signs and symptoms that my gut said wasnt right but that 3 different vets said...............".Phenobaribtol can have these side effects during the first 3 weeks". At times I was made to feel like I was being overprotective, but I wasnt.......... I called almost every night to an er vet and daily to my vet. And I know they were sick of hearing from me at my vet. After a week, I thought this is all Crap! And made an appt in Philadelphia at the vet neurologist whom is only there Wednesdays. As Ive said we never did make it to that appointment because Mufftt broke into clusture seizures that could not be controled even with valiun. MY son Timothy was waiting at the door as I pulled into the driveway from work, he said lets go! I ran in got all her paper work and we headed to yet another er vet to stabilize her and than transport her 2 hours away to Redbank Vet Hospital in Tinton Falls NJ. Driving with Muffett wrapped in a towel and IV capped, sooo lethargic from the drugs and yet still her body quivered constantly with seizures, looking up into my eyes.......you know that look Susan, Cathy, JMM? Sure you do, it is a look you cant even put into words, an image that pulls soo tight at your heart. It is looking back and remembering certain thisngs the pup did and certain thing that you did that were all necessary to keep the Malts safe and as calm and content as possible...........sooo many things








Yes, I was admittedly devastated with the diagnosis and the thought that Id never see her again.
umm hmm she was a dog to a majority of people. But to me she was as are my other two, my constant companions ,we really are never apart. Some will understand this an d some may not. There is just nothing quite as rewarding as the love of a Maltese. I hope we can find another Malt........but it is frighteneing, and we all know there are no guarentees in this life. I just hope the right pup presents itself to us
and we are blessed with longevity. We can cope with the samller illnesses that may pop up, Not Gme/Nme. Its Very difficult to watch, and none should have to go through that..........
In the end the vet was wrong, and my gut was right. Though I had never ever heard og GME with the Maltese. I want to know cause, especially when I am one of those that searched canine nutrition for years on the net, vaccine and reactions,,,etc......all to be the best possible pet owner I could be. Its the least I could do for all the wonderful moments they gave me.......Cameo and Rose are adjusting to a two Maltese home, and each day gets a little better.........for all of us.


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## Cosy (Feb 9, 2006)

Write to the AKC complaining that the AMA has little to no info regarding the

health and welfare, let alone diseases found in maltese on their site. Express

disappointment and concern with the growing amount of indiscriminate breeders

the AMA should be devoting at least a few webpages giving insight as to 

what to look for in a breeder and information on diseases found in the breed.


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## k/c mom (Oct 9, 2004)

> Actually, I think I stayed pretty well focused. I am a nurse, so my ability to function during crisis was pretty ggod. The initial "probable" diagnosis was, Epilepsy. Muffett having just turned 5 was right on the boarder with age. Younger than 5."probably epilepsy" Older than 5 it may be something quite different" The vet that do to her being a breed that lives a fairly long life she wanted to lean towards the epilepsy. Which was ok, I knew it could be treated and she should be fine with medications to control the seizures. The story is very long and involved from here with all her signs and symptoms that my gut said wasnt right but that 3 different vets said...............".Phenobaribtol can have these side effects during the first 3 weeks". At times I was made to feel like I was being overprotective, but I wasnt.......... I called almost every night to an er vet and daily to my vet. And I know they were sick of hearing from me at my vet. After a week, I thought this is all Crap! And made an appt in Philadelphia at the vet neurologist whom is only there Wednesdays. As Ive said we never did make it to that appointment because Mufftt broke into clusture seizures that could not be controled even with valiun. MY son Timothy was waiting at the door as I pulled into the driveway from work, he said lets go! I ran in got all her paper work and we headed to yet another er vet to stabilize her and than transport her 2 hours away to Redbank Vet Hospital in Tinton Falls NJ. Driving with Muffett wrapped in a towel and IV capped, sooo lethargic from the drugs and yet still her body quivered constantly with seizures, looking up into my eyes.......you know that look Susan, Cathy, JMM? Sure you do, it is a look you cant even put into words, an image that pulls soo tight at your heart. It is looking back and remembering certain thisngs the pup did and certain thing that you did that were all necessary to keep the Malts safe and as calm and content as possible...........sooo many things
> 
> 
> 
> ...


Kathy, thank you for sharing your story with us.







Oh, yes... I think most of us totally understand your love and devotion to your babies. You are at the right place to share such feelings. There are people out there in the world who roll their eyes when we talk about such things, but not here at SM. You are among friends who love this breed and who mourn when one has to go to the Bridge.


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## Furbaby's Mommie (Jul 10, 2004)

Kathleen: I haven't cried this hard since MsMagnolia's Sassy died. Yours is a heart wrenching story. I am so sorry!


















I know we have vets, vet techs, breeders, show people, as well as a lot of concerned pet owners here. To those of you who have knowledge of these diseases or access to professionals who do--PLEASE, please, people let's do something! Our little white angels are so special, they need our help or we are going to continue loosing them to this insidious thing at an increasing rate!


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## Sanvean (May 17, 2004)

I just wanted to update you guys ... Macy does appear to have GME.


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## jude'n'jools (Apr 6, 2006)

Praying for your little girl.


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## Furbaby's Mommie (Jul 10, 2004)

> I just wanted to update you guys ... Macy does appear to have GME.[/B]


 

Alexis, Honey I'm so sorry.


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## msmagnolia (Sep 8, 2004)

Alexis, I posted on the other thread. I truly believe that if she has only the GME (and not NME) that there is a chance that some of the newer treatments could give her a good quality of life for longer than she will have if only treated with Pred. Please email or fax Dr. Sisson right away. He can help you. Time is of the essence with this disease.....email me any time.


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## lorraine (Jun 24, 2006)

My "annoying old-biddy" campaign starts:











> Dear Dr <....>
> 
> As a one-time Cavalier KC Spaniel owner, I have been aware of your excellent and tireless work on syringomyelia in the breed and that it has also been seen in Cavalier Spaniels, Maltese Terriers a Yorkshire Terrier and a Pomeranian and it is very likely to be found in Chihuahuas. I have also read of your work on epilepsy and several breed/genetic/immune-related conditions in dogs and cats.
> 
> ...


Later... several "billy-doos" being lined up for local and national newspapers, a Member of Parliament or two or three with constituencies in South East London.

Who let the Rottie out wooof, wooof ?









BTW the good doctor's work on Cavalier KC Spaniels was sponsored/financed by the Cavalier King Charles Spaniel Club of Great Britain - hint, hint


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## jude'n'jools (Apr 6, 2006)

> My "annoying old-biddy" campaign starts:
> 
> 
> 
> ...





> Dear Dr <....>
> 
> As a one-time Cavalier KC Spaniel owner, I have been aware of your excellent and tireless work on syringomyelia in the breed and that it has also been seen in Cavalier Spaniels, Maltese Terriers a Yorkshire Terrier and a Pomeranian and it is very likely to be found in Chihuahuas. I have also read of your work on epilepsy and several breed/genetic/immune-related conditions in dogs and cats.
> 
> ...


Later... several "billy-doos" being lined up for local and national newspapers, a Member of Parliament or two or three with constituencies in South East London.

Who let the Rottie out wooof, wooof ?









BTW the good doctor's work on Cavalier KC Spaniels was sponsored/financed by the Cavalier King Charles Spaniel Club of Great Britain - hint, hint








[/B][/QUOTE]

Good for you Lorraine







you are just the person we need to head this campaign.
















P.S. It's not a Maltese Terrier your getting just Maltese. They droped "Terrier" quite a while ago.


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## lorraine (Jun 24, 2006)

> P.S. It's not a Maltese Terrier your getting just Maltese. They droped "Terrier" quite a while ago.[/B]


I't all right, Elaine, I'm not getting senile - well not very senile.








The term was used in the Doctor's research papers. Thought I'd stick to it - didn't want too sound too elitist - doncha know


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## k/c mom (Oct 9, 2004)

Wow, Lorraine.... fabulous letter!!!


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## k/c mom (Oct 9, 2004)

> My beloved Amy, aka American Beauty, died from this horror GME. I still don't know why I bother to capitalize it. She was 9 yrs old, diagnosed in February '01 and died 6 months later in August '01. I was told it could be an auto-immune disease. Another informative website is Vetinfo.com
> 
> 
> I'll be seeing my neurologist in a few weeks because my baby Lola had a 108 degree temperature and now suffers with seizures. I'll ask him if he can help us out. I'll have to compile a list of questions so I don't forget anything.
> ...


Kerry, I am so very sorry for your loss of Amy.


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## KAG (Jun 1, 2006)

Thank you, Kallie and Catcher's Mom. You're a sweetheart.


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## Cathy (Mar 19, 2006)

> I just wanted to update you guys ... Macy does appear to have GME.[/B]


Sanvean,

I'm so sorry to hear that Macy appears to have GME. What has happened to make your vet change his/her mind? Last I heard the spinal tap results were okay. My heart goes out to you as I know how difficult this is. Both GME and NME are wicked and it's so sad to watch our babies go through the effects of these diseases.

Please let us know how Macy is doing.

Cathy


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## I found nemo (Feb 23, 2006)

So Sorry to her about Macy.. My thoughts and prayers are with you..



Andrea~[attachment=9202:attachment]


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## Sanvean (May 17, 2004)

> I'm so sorry to hear that Macy appears to have GME. What has happened to make your vet change his/her mind? Last I heard the spinal tap results were okay. My heart goes out to you as I know how difficult this is. Both GME and NME are wicked and it's so sad to watch our babies go through the effects of these diseases.[/B]


She consulted with a neurologist (they don't have one on staff at MSU). They're still just thinking it's a possibility. I've been in touch with Dr. Sisson in Boston and am hoping he can help us learn more.


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## k/c mom (Oct 9, 2004)

> QUOTE





> I'm so sorry to hear that Macy appears to have GME. What has happened to make your vet change his/her mind? Last I heard the spinal tap results were okay. My heart goes out to you as I know how difficult this is. Both GME and NME are wicked and it's so sad to watch our babies go through the effects of these diseases.[/B]


She consulted with a neurologist (they don't have one on staff at MSU). They're still just thinking it's a possibility. I've been in touch with Dr. Sisson in Boston and am hoping he can help us learn more.
[/B][/QUOTE]

How is she doing? ... Has she had more seizures?


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## msmagnolia (Sep 8, 2004)

Have faith in Dr. Sisson. If it really is GME then I know that he can help her. How big is Macy? I have some medications that he had sent me that were for Sassy's weight (approx 5 pounds). If he can help Macy then you could ask Dr. Sisson if you could use some of the stuff I already have paid for. It would make me so happy to know that Macy was getting the benefit.


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## Sanvean (May 17, 2004)

> How is she doing? ... Has she had more seizures?[/B]


Nope, no more seizures! She's still kind of mopey, but right now we're not worrying about that too much.



> Have faith in Dr. Sisson. If it really is GME then I know that he can help her. How big is Macy? I have some medications that he had sent me that were for Sassy's weight (approx 5 pounds). If he can help Macy then you could ask Dr. Sisson if you could use some of the stuff I already have paid for. It would make me so happy to know that Macy was getting the benefit.[/B]


That is so sweet of you! Macy is just a tad bigger -- she's abut 6 pounds.


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## Sanvean (May 17, 2004)

Just wanted to update you guys. I spoke with Dr. Sisson at length today, and he thinks it looks like Macy does have GME.

Susan, you don't happen to have any Lumostine, do you? We are going to be starting her on that soon, as well as upping her pred.


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## msmagnolia (Sep 8, 2004)

I am going to make a list of all meds and send the list to you and if you can use any of it I want you to have it. I will work on it tonight as I will be out of town for a few days tomorrow. Fortunately the Lomustine is only about $15 a pill and you only give one per month. The bloodwork that goes with it is the expensive part, but it isn't awful. There are some other drugs that he may introduce so I'll list all that I have in case any of those will be used. Let me see how much Pred I have too. I'm going to keep some on hand in case any of the other dogs have a non-serious problem that requires it. I may not need to keep all that I have......

I want Macy to be the Maltese that beats this. It would mean that Sassy's death and all that Jaimie and I did on her behalf, and all the prayers that people here sent her way - was not in vain. I am holding on to the belief that she CAN be helped........


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## Sanvean (May 17, 2004)

Susan, you have been so helpful and wonderful throughout all of this. Thank you so much for all you have done.


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## paris (Apr 8, 2005)

> Just wanted to update you guys. I spoke with Dr. Sisson at length today, and he thinks it looks like Macy does have GME.
> 
> Susan, you don't happen to have any Lumostine, do you? We are going to be starting her on that soon, as well as upping her pred.[/B]


You and Macy will be in my prayers.


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## Ptarana (Jul 12, 2006)

Hi, I am new to the Maltese forum as I am usally in a yorkie forum. About 3 months ago I lost my beloved Chelsey (yorkie) to GME. This disease is found in small female breeds. And is almost always fatal. What it does is cause leisons on the brain and spinal cord. The dogs immune system attacks it self. I have read why there isn`t a lot of studies on it is because they need the animals that have died from this disease to study and not many people are willing to donate their precious babies bodies for this. Just thought i would share.I am now a new mommy of a maltese and shih tzu.


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## k/c mom (Oct 9, 2004)

> Hi, I am new to the Maltese forum as I am usally in a yorkie forum. About 3 months ago I lost my beloved Chelsey (yorkie) to GME. This disease is found in small female breeds. And is almost always fatal. What it does is cause leisons on the brain and spinal cord. The dogs immune system attacks it self. I have read why there isn`t a lot of studies on it is because they need the animals that have died from this disease to study and not many people are willing to donate their precious babies bodies for this. Just thought i would share.I am now a new mommy of a maltese and shih tzu.[/B]


I am so very sorry for your loss of Chelsey.


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## Brinkley & Neyland's Mom (Jun 14, 2004)

> Hi, I am new to the Maltese forum as I am usally in a yorkie forum. About 3 months ago I lost my beloved Chelsey (yorkie) to GME. This disease is found in small female breeds. And is almost always fatal. What it does is cause leisons on the brain and spinal cord. The dogs immune system attacks it self. I have read why there isn`t a lot of studies on it is because they need the animals that have died from this disease to study and not many people are willing to donate their precious babies bodies for this. Just thought i would share.I am now a new mommy of a maltese and shih tzu.[/B]



I didn't know it was mostly female...that is interesting.

So sorry about your loss!


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## KathleensMaltese (Sep 5, 2004)

> Hi, I am new to the Maltese forum as I am usally in a yorkie forum. About 3 months ago I lost my beloved Chelsey (yorkie) to GME. This disease is found in small female breeds. And is almost always fatal. What it does is cause leisons on the brain and spinal cord. The dogs immune system attacks it self. I have read why there isn`t a lot of studies on it is because they need the animals that have died from this disease to study and not many people are willing to donate their precious babies bodies for this. Just thought i would share.I am now a new mommy of a maltese and shih tzu.[/B]



Im so very sorry you and Chelsey had to go through this battle. Sad. Ive read that it occurs mostly with females as well, though they do not know the reason.
Susan or Cathy? Have you heard of any males being affected?


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## msmagnolia (Sep 8, 2004)

The little dog Aron was male and Marco was male. Right now Hugo on the GME Dogs forum is a male maltese suffering from GME. A Coton is in remission who is male. Among Maltese, there seem to be more females affected than males. It is not unheard of, however, for males to have GME or NME. 

Let me say that NME is always fatal and usually in a short period of time. GME, however, is having some success being treated with various chemo drugs. If you go to GME Dogs on Yahoo Boards you will read more than one success story about dogs who have been successfully put into remission from the GME. Dr. Sisson has a 90-95% success rate with long term remission (he says his study has only lasted 4 years, but the dogs are hanging in there!) From the dogs that have been treated and are in remission, they mostly seem to be bigger dogs than Maltese. I don't know if the size has anything to do with the success or not. Unfortunately vets and vet neurologists can't accurately determine whether the dog has NME or GME until necropsy. Many cases are called GME, but in reality are NME and that disease is always fatal.


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## Cathy (Mar 19, 2006)

I had read that GME and NME affect more females than males but I don't remember where I read it. I've contacted a Maltese breeder in Australia whose dogs are participating in the Australian study on GME. I sent her Sophie's necropsy and blood work to give to the vet who is researching the disease. Although the current study is on GME and not NME her results may come in handy in the future.

I've also gone through all the pedigrees that have been given to me but I'm missing quite a few. For most dogs I have the pedigree of one parent but not the other. 

Lastly, I wish that the pathologist had suggested to me that Sophie's body was needed for research. I would have gladly donated it.

Cathy


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## KAG (Jun 1, 2006)

Susan,
I love your picture of Your Future Hope. After my Amy died of GME, I knew my new baby would have to have a strong name. I chose Lola Faith because Lola means strong woman in Spanish, and Faith because it was right after September 11th. Hope is a beautiful name.
Kerry

My other baby Crisse was named and spelled by the humane society and asked us to keep her name.


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## Furbaby's Mommie (Jul 10, 2004)

> I had read that GME and NME affect more females than males but I don't remember where I read it. I've contacted a Maltese breeder in Australia whose dogs are participating in the Australian study on GME. I sent her Sophie's necropsy and blood work to give to the vet who is researching the disease. Although the current study is on GME and not NME her results may come in handy in the future.
> 
> I've also gone through all the pedigrees that have been given to me but I'm missing quite a few. For most dogs I have the pedigree of one parent but not the other.
> 
> ...


Hi Cathy, Will you be able to let us all know if/when you see any kind of pattern in the pedigrees? I am thinking it will be a touchy situation for breeders to see their lines mentioned---pet owners want to get all the 'possibles' as soon as possible, but seems like breeders may want it surpressed having lines show up until there is some concrete proof. What do you think?


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## Cathy (Mar 19, 2006)

Hi Cathy, Will you be able to let us all know if/when you see any kind of pattern in the pedigrees? I am thinking it will be a touchy situation for breeders to see their lines mentioned---pet owners want to get all the 'possibles' as soon as possible, but seems like breeders may want it surpressed having lines show up until there is some concrete proof. What do you think?
[/QUOTE]


Dee,

I'll need a lot more pedigrees before I'll even be able to guess at any links. I'm missing so many...... 

Does anyone know the results of the necropsy on the Maltese who died in England?

Cathy


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## jude'n'jools (Apr 6, 2006)

> Hi Cathy, Will you be able to let us all know if/when you see any kind of pattern in the pedigrees? I am thinking it will be a touchy situation for breeders to see their lines mentioned---pet owners want to get all the 'possibles' as soon as possible, but seems like breeders may want it surpressed having lines show up until there is some concrete proof. What do you think?




Does anyone know the results of the necropsy on the Maltese who died in England?

Cathy
[/QUOTE]


Do you mean Marco? *coughcough* SCOTLAND!


If so, he said he will let us know when he knows.


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## Cathy (Mar 19, 2006)

[
Do you mean Marco? *coughcough* SCOTLAND!


If so, he said he will let us know when he knows.
[/QUOTE]


OOPS!!! Yes, I meant SCOTLAND!







I wonder if Marcos has received the results and just hasn't posted yet. I had a verbal diagnosis in a week but the histology and written report took much longer.

Cathy


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## lorraine (Jun 24, 2006)

OK
I am very conscious this thread is about dogs that have GME/NME and that it got side-tracked slightly into "What are we going to do about it?". 

I don't think it is worth starting a new topic but I thought I should report back on the outcome of my contact with a neuro-vet. That person was not interested (but that did not surprise me), however, the Vet facilitated a conference call with the European College of Veterinary Surgery. No luck there - lots of money being spent on research into diagnosis and treatment but little (none) going into researching the causes - they are comfortable with sticking with - idiopathic i.e "no known cause". I heard someone comment about the political aspects or vested-interests, citing lung cancer and the tobacco companies. So take that any way you fancy. 

I have been in contact with some UK based Maltese Societies and Clubs. No interest, I'm afraid and total rebuttal that Maltese *could* be prone to the condition. I have attended two local Members of Parliament week-end "surgeries" as they love to call the times when they allow the people they represent to come into personal contact with them. I was, more or less, laughed at. 

Do any of those people who stated they would be contacting breed societies or writing letters have any updates, is anyone setting up a "Blog", has any data been collated that could be made publicly available ? 

'cos I'm feeling a bit alone in all this.


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## msmagnolia (Sep 8, 2004)

Hey Lorraine,
You are not alone. I worked on a letter to Dr. Sisson this morning and will continue on with the pug society this weekend. I, too, got a bit sidetracked, but want to continue probing into this disease.

I will let you all know what Dr. Sisson has to say.....

Susan


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## Furbaby's Mommie (Jul 10, 2004)

Lorraine: Cathy is compiling some data, pedigrees, etc. from what I've understood. The information you have posted for us is a great help. At least we know more about who is/isn't researching cause. Thank you for your great effort!! As I said before you are a wealth of knowledge! You contacts are amazing!


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## Cathy (Mar 19, 2006)

Do any of those people who stated they would be contacting breed societies or writing letters have any updates, is anyone setting up a "Blog", has any data been collated that could be made publicly available ? 

'cos I'm feeling a bit alone in all this.








[/QUOTE]

Geat job, Lorraine! Since I just started collecting data in January it's premature to talk about any of the information I've collected. I'm still missing a lot of pedigrees and only Susan and I have done histories. I did send Sophie's necropsy and Histology results to the researcher in Australia who is researching possible causes.

Unfortunately, since GME and NME can only be definitively diagnosed after death there are probably more deaths from these diseases than verified. If they found a better way to diagnose before death, the numbers would increase and more key people may become interested. 

Cathy


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## KathleensMaltese (Sep 5, 2004)

> lots of money being spent on research into diagnosis and treatment but little (none) going into researching the causes -
> 
> "they are comfortable with sticking with - idiopathic i.e "no known cause". "
> 
> ...


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