German Shepherd Dog > IMPORTANT ANNOUNCEMENT re Degenerative Myelopathy (DM) (105 replies)

by marjorie on 24 February 2012 - 17:51
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--- >What are the current statistics on this, it would support your argument so I am presuming that you are keeping some data on it?

I havent been keeping data on it, but I should. I am just so busy with Missie T I hardly get to my emails and usually only go on the internet to check for support group questions my mods cannot answer with an SOS in  their email header that something needs my immediate attention, or I am following something, online. I have gotten emails from people about the results of tests, or people who know someone who had the U Of Missouri test when the results come back not as expected, upon necropsy. Not many choose to do a necropsy, so it will be very hard to gather data. I will begin keeping emails from now on, in relation to this sunbject, so I can build a database. Thats a very good idea, but again, how many will actually do a necropsy I really dont know. My guess is not many, but you are correct- it would be  a VERY good way  to gather much needed data.  :( Again, I also dont know how people will even  know I am going to keep stats, or how to even let them know. I would appreciate it if those of you reading this thread would pass the word around that I will be keeping these stats, to email me if they necropsy their dogs with the subject title Necropsy and the U of Missouri DNA Test if the rssults dont jive.
 
I dont know what the U of Missouri has said about the test results not being consistent with the test. I have zero contact with them. I certainly wish they wouldnt automatically give a clear to progeny of clear dogs, for as stated, there has been no generational follow up, as the dog ages, to see if this is even valid, over time. That would have been the responsible thing to have done before making pronouncements, IMHO. This discounts imprinting-basically the concept that other genes influence the expression of the main genes that are thought to control genetic disease transmission. The concept of gene “imprinting” is  where some genes turn on or off and those influence whether other genes function and therefore create consequences. If you don’t find which other genes determine whether the “primary” gene acts, you are missing the answer.   triggers are environment and other factors which are set at puberty. If you have the SOD1 change (or the change in the DM Flash test) and your DNA (Dark DNA if you want) imprints at puberty in the wrong way, then you get GSDM. Otherwise, you do not. 

 If you don’t find which other genes determine whether the “primary” gene acts, you are missing the answer.  

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by marjorie on 24 February 2012 - 18:15
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---> I would like to see the DNA results of puppies produced by at risk x at risk.
me, too. I would like to see generational follow ups of all, however.
 
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by Abby Normal on 24 February 2012 - 23:39
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Is it known whether there is any type of programme by the UofM for a follow up of any group?

If the evidence is available to prove that the test does not work it surely must be presented to UofM to challenge the test, isn't this the whole purpose of your campaign?

I appreciate that for now you must give Missie T your time, but when it is appropriate I feel that this must be formally taken up with the UofM if the evidence is available..
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by Blitzen on 25 February 2012 - 01:01
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Marj, were either of Missy's parents DNA tested using either protocol?

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by marjorie on 25 February 2012 - 01:38
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No they werent tested :( Her breeder went through a divorce and had to place all her dogs :( Joss was tested, and he was negative on the Flash Test.  He was 11 years old when he had to be euthanized due to vet error  (I learned the hard way that I am not capable of murder), and he did not exhibit any DM signs.
 Missie T and Joss's grandfather were brothersMissie T and Joss are closely related on both sides of their pedigree- you can see this by comparing their pedigrees...
http://www.mzjf.com/missie_pedigree.htm   
 http://www.mzjf.com/joss_pedigree.htm  http://www.mzjf.com/joss_pedigree.htm
 
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by oregontnt2007 on 25 February 2012 - 01:40
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I am so glad I found this, I lost my GSD to DM. It was the worst thing ever to see her slowly die from this with everything we did to try to save her. We spent our savings 2 years ago. She was "affected" on both sides. Her poor back feet were missing hair from he dragging her back toes ( buckling over ) so we spent money going from vet to vet begging for help. There was nothing to do to save her. We had her creamated. I have had friends that had dogs were carrier's and doing well so far.
This forum is full of so much info that I am so overwhelmed by it. There is info I never evne knew about until now. I just bought a new GSD pup where the parents are clear.
after reading this site, it changes my mind on DM. It is a lot to digest after dealing with my beloved girls death. I too was in denial about this conditon hoping, begging & crying that is was not true.
I had to put her down, she died in my arms. I dont blame the breeder, they did not know at the time of the breeding. They just did not know. I tested her with OFA & now I see that OFA testing might not be 100% with other test. I was told that before so that is why with my last dog I went with DDC testing. So it is true after all. How correct are these test? I then had
another dog I had I tested, she came up as a carrier, I did the 50 yard dash backwards in TWO SECONDS with her. She was so sweet, but needed a stronger dog! I could not bear to deal with that in anyway again. I was assured over & over by OFA & DDC that she would not change to affected since only 1 parent was a carrier & the other parnent was clear. ok
I think I am going to go now, it is too much for me with all the memories.
To those that do have DM affected dogs, I will pray for you & your beloved babies.
good night all  :)
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by marjorie on 25 February 2012 - 01:40
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--- >I feel that this must be formally taken up with the UofM if the evidence is available..  

Rest assured that when have the time, it will be formally taken up, but not with the U of Missouri.....Dont u find it curious that they are claiming that ALS is the animal model of ALS and the ALS Society has no knowledge of this? I pray I wont have the time for many moons to come, although I know my prayers are not realistic. However, there will come a time when my time is not consumed by caring for Missie t, and when I do, nothing is going to stop me from doing what needs to be done.

Thank God for Dr C- he has, through his research, enabled Missie T to get back up and walk, once she was already down. However, the research program she is on is not a cure, especially at the advances stages of her disease. She has had a lot of extra quality time, because of his experimental program, though, and I treasure each and every day. However, I feel sorry for other DM dogs, who couldnt be a part of his research trial because they deserved to have the same chance at a longer life, with quality, as Missie T has had, but cant, due to politics steering research money away.
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by marjorie on 25 February 2012 - 02:54
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Oregon, my heart goes out to you...  DM is such a horrid disease- there are so many awful diseases our breed develops, but DM is the worst, IMHO. The dogs feel no pain,and one just sits, helpless, while their beloved fur kids waste away in front of our eyes, and its the worst feeling in the world to be so helpless and unable to do anything about it. Honestly, I dont know how the OFA could say what they said, as they dont understand the science behind the U of Missouri test. When Dr Clemmons was doing the DM flash Test, he made it clear that there were no guarantees, because it is way too early in the research to know what will happen in the future.  He cautioned against jumping to premature conclusions and labeling dogs or removing them from the gene pool based upon research that is in its infancy. To be accurate, and to claim, with certainty, that a dog will be DM free, one would have to follow many generations to make the kind of statements that are being bandied about with the U of Missouri test. Furthermore, it is highly unlikely that there is a sole gene that causes DM. I am so sorry you were touched by DM. Once enveloped in the DM nightmare, it becomes an experience that one will carry with them to their grave, it is so traumatic. I am so sorry for the loss of your fur kid.  One never gets over the loss of a dog to DM- one just learns to live with it, but the scars are carried forever, as permananetly as one's name :( I know-sadly,  I have walked this road before and once again, I have found myself on the same path... I , however, will never own a GSD again, as much as I love the breed. They have been bred to implode, and the politics are way too destructive and petty for me to be able to have another, ever again.
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by Abby Normal on 25 February 2012 - 16:16
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I , however, will never own a GSD again, as much as I love the breed. They have been bred to implode

Someone here once stated that the GSD breed was one of the healthiest breeds of pedigree dogs in the world.

I disagreed.
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by marjorie on 25 February 2012 - 16:39
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--- > Someone here once stated that the GSD breed was one of the healthiest breeds of pedigree dogs in the world.

 Yeah- and I am 17 yrs old ;) Better chance of me waking up tomorrow morning and being 17 than there is a chance of the above being a true statement. Do you see breeders flcoking to the German Shepherd Dog Breed Betterment Registry to enter their dogs? Dont hold your breath.

Marjorie
http://www.gsdbbr.org The German Shepherd Dog Breed Betterment Registry
BE PROACTIVE!
http://mzjf.com --> The Degenerative Myelopathy Support Group
 
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by dsurber on 25 February 2012 - 19:45
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Blitzen wrote:

If the MO test is so flawed why have all GSD diagnosed with DM DNA tested at risk using their protocol?


Abby Normal wrote:

If the evidence is available to prove that the test does not work it surely must be presented to UofM to challenge the test...


Not all GSD's diagnosed with DM have tested at risk using the UM test. UM is aware of at least one GSD that tested normal/normal and yet had DM. I know this beyond any shadow of a doubt because he was my dog.

My previous GSD began showing signs of DM several years ago starting with loss of motor control and sensation in his rear. As soon as the UM test was announced we had him tested. He was normal/normal, meaning not at risk and not a carrier. Yet his symptoms progressed and my vet said that she had no doubt that he had DM. When he died we had samples collected according to the UM protocol and sent to UM (at no small expense I might add). They re-did the DNA test; still normal/normal. The UM pathologist said he had DM. Dr Coates asked the pathologist to recheck and the result was the same, DM. This is per personal telephone conversation I had with Dr Coates.

So UM has at least one case of a GSD that was normal/normal, checked twice, had classic clinical signs of GSD-DM, and was diagnosed by the UM veterinary pathologist as having DM, twice. Dr Coates knows all this because she is the one who told me.

Dr Coates's hypothesis is that DM is canine ALS. ASL does not cause loss of sensation. My wife has had close personal contact with ALS. She confirms beyond any doubt that ALS does not cause loss of sensation. My GSD clearly lost sensation starting in the rear and moving forward. We actually tracked the progress of his disease by measuring how far up his torso the loss of sensation went.

GSD-DM is not canine ALS. The UM test does not identify GSD-DM. I see no point in testing GSDs using the UM test. It may be a good test for Boxers and Corgis--I have no opinion on that--but it is not a good test for GSDs.
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by marjorie on 25 February 2012 - 22:03
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dsurber

Thank you so much for coming forward. I know you are not the only one with a GSD that has had this happen.  As the founder of the DM Support Group and having had 2 DM GSDS, myself, I KNOW GSDM is not ALS! An uncle of mine had ALS and the symptoms and progression are nothing alike. I really appreciate you taking the time to come here and tell your story. Our breed needs to get back on track and stop wasting time with a test that has zero validity for our breed. I have been shouting  it from the rooftops, but people are just selectively deaf I guess. Perhaps there are breeders who want to use it to test their dogs because they are testing for a disease our breed doesnt get, so perhaps they believe they will get an easy clear. Please have others post here, with stories similar to yours, if you know of more. Unfortunately, my old emails are gone, with the names of people who wrote me with experiences, which is why I began to look more closely at this test, in relation to GSDS. The more I delved, the less likely it was that we are talking about the same disease!  Again, thank you for coming forward!

Marjorie
http://www.gsdbbr.org The German Shepherd Dog Breed Betterment Registry
BE PROACTIVE!

http://mzjf.com --> The Degenerative Myelopathy Support Group  

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by Blitzen on 25 February 2012 - 22:45
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I didn' t make that up!!! One of the reports  from UM that I read said that all GSD's diagnosed with DM have tested at risks. 

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by Blitzen on 25 February 2012 - 22:53
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In the meantime, I guess it's up to the individuals to test or not their breeding stock and up to buyers to decided if no DM test is or is not a deal breaker.

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by dsurber on 25 February 2012 - 23:05
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Blitzen wrote:

I didn' t make that up!!! One of the reports  from UM that I read said that all GSD's diagnosed with DM have tested at risks.

I don't doubt that. It may have been true at one time, but as of August 2011 it certainly not true.
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by Abby Normal on 25 February 2012 - 23:21
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dsurber
Was this reported to the OFA? and how was it left with Dr Coates, ie what was the next action point, and what did you do next?

Marjorie
As you have a DM support website, can I suggest that you have a page or whatever on your site where you request that people register their info/results so that you have a record of data. It seems a logical step.

I still would not throw this test out. The more tests there are the more data it will ultimately produce. If that data proves the test to be flawed it by necessity will lead to further research, and in the meantime others are researching it anyway.

 


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by GSD2727 on 25 February 2012 - 23:26
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Hi Marjorie - been a long time since the old AOL Boards :)

Curious, you said there is evidence of dogs who were NOT tested "at risk" yet still proven to have DM on necropsy.  Can you point me towards this information/proof/evidence?  I have heard this, but been unable to find any "proof" of it other than "so and so said" or "I heard it".  

I am truly sorry to hear that Missie T has DM... 

Valerie 
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by dsurber on 26 February 2012 - 00:03
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Abby Normal wrote:

Was this reported to the OFA? and how was it left with Dr Coates, ie what was the next action point, and what did you do next?

I did not report it to OFA or anyone else. I'm a dog owner not a researcher. I expect that Dr Coates and her team are ethical scientists and that if their hypothesis is falsified, as it appears to have been, they will report this fact and adjust their research accordingly.

Dr Coates said she had flagged my dog's case for further study. She also said that they would do a full DNA sequence when that became cost effective.

I think a large part of the problem is one of language. There appear to be (at least) two diseases called "DM". One does not affect sensation, is prevalent in Boxers, Corgies, etc, and is being studied by Dr Coates. The second disease does affect sensation and is prevalent in GSDs. Unfortunately both are called DM. This is confusing the public and perhaps confusing the researchers as well. In my very humble opinion, what needs to happen next is that Coates, Clemmons, and the rest of the canine DM research community need to describe the two different diseases and clarify to themselves and others which one they are studying.

I don't doubt that Dr Coates has done valuable research on a disease prevalent in Boxers and Corgis. It seems likely that the UM test is valuable for detecting a genetic marker for that disease. I am concerned that OFA, UM, the media, and the public do not distinguish this disease from the one that commonly afflicts GSDs. From what I can tell, the GSD disease is quite different from the disease studied by Dr Coates. The two are easy to distinguish clinically. If the dog has lost sensation it is not the disease studied by Dr Coates. It may be that UM still thinks there are no normal/normal dogs with DM because they exclude dogs who have lost sensation. By their definition of the disease that is correct but it doesn't help the GSD community at all. I have no real objection to such an exclusion so long as they are very clear about it.
 

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by Abby Normal on 26 February 2012 - 00:06
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Marjorie
Just a thought that has occurred to me resulting from Valerie's comments.

If the accuracy of this test is to be challenged the evidence gathered needs to be very clean, clear and accurate. So I would guess that you would need to ask people to supply copies of their DNA test result, and a copy of the necropsy result and possibly the pedigree in order to present the relevant information to the appropriate body.
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by Abby Normal on 26 February 2012 - 00:18
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dsurber
Firstly let me say that I should have started by saying that I am very sorry that you lost your dog to DM, it's a club that many of us belong to but sorely wish that we never had to join.

Thanks for that reply. It is interesting and it is good to see that Dr Coates flagged your dog's case for further study. 
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