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DM dogs- clinical trial in southeast Florida #205442
01/13/12 07:26 PM
01/13/12 07:26 PM
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starrchar Offline OP
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I am new to this forum and accidentally came across it while trying to find out info on anal fistulae DNA testing. I hope I am posting this in the right place and that it is ok to post this information.

Some drugs are presently being developed and tested for ALS. THere is a drug that will soon be tested on DM dogs, because ALS is so closely related to DM. There is a clinical trial that will start soon and my vet, Dr. Loeser of Davie, Florida, is going to work with the research lab on this trial. I have been told the drug is very safe, but it's efficacy is yet to be determined.

My dog, Shelby, presently has DM and will be participating in the trial. Shelby is a rescue so I know nothing about her past or pedigree. She is about 6 years old. A little over a year ago I noticed that Shelby had wear on the nails of her left hind foot. I took her in to be examined. A thorough exam was performed and X-rays were taken. THe x-rays showed her hips are very good and her spine had no abnormalities. She was diagnosed with DM through the DM DNA test in January 2011. She has had various treatments over the past year, such as PT, massage therapy, laser therapy, acupuncture and stem cell therapy. She has also been on a raw diet (vet formulated) and Dr. Clemmon's protocol. She has steadily declined in spite of all the therapy, but she is still holding her own. THis trial is my last hope.

If you have a dog with DM and are interested in having your dog participate in this trial and you live in southeast Florida, please feel free to PM me or you can call Dr. Loeser directly. Dr. Loeser's phone number is 954-916-4903.

Please feel free to pass this information on to other forums or clubs.

The best to everyone,
Charlene Babyak

Last edited by starrchar; 01/13/12 07:27 PM. Reason: clarification

Shelby- LC GSD rescue~ CGC, Certified Therapy Dog
Josey Wales- Shiloh Shepherd rehome~ CGC, TT, Certified Therapy Dog
In loving memory of GSD Bruno 1993-2007
In loving memory of GSDs Schatzie, Lady, Arnie and Allie
Re: DM dogs- clinical trial in southeast Florida [Re: starrchar] #205449
01/13/12 07:57 PM
01/13/12 07:57 PM
Joined: Feb 2010
Posts: 2,488
Central Florida
arycrest Offline
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Originally Posted By: starrchar
I am new to this forum and accidentally came across it while trying to find out info on anal fistulae DNA testing. I hope I am posting this in the right place and that it is ok to post this information.

Some drugs are presently being developed and tested for ALS. THere is a drug that will soon be tested on DM dogs, because ALS is so closely related to DM. There is a clinical trial that will start soon and my vet, Dr. Loeser of Davie, Florida, is going to work with the research lab on this trial. I have been told the drug is very safe, but it's efficacy is yet to be determined.

My dog, Shelby, presently has DM and will be participating in the trial. Shelby is a rescue so I know nothing about her past or pedigree. She is about 6 years old. A little over a year ago I noticed that Shelby had wear on the nails of her left hind foot. I took her in to be examined. A thorough exam was performed and X-rays were taken. THe x-rays showed her hips are very good and her spine had no abnormalities. She was diagnosed with DM through the DM DNA test in January 2011. She has had various treatments over the past year, such as PT, massage therapy, laser therapy, acupuncture and stem cell therapy. She has also been on a raw diet (vet formulated) and Dr. Clemmon's protocol. She has steadily declined in spite of all the therapy, but she is still holding her own. THis trial is my last hope.

If you have a dog with DM and are interested in having your dog participate in this trial and you live in southeast Florida, please feel free to PM me or you can call Dr. Loeser directly. Dr. Loeser's phone number is 954-916-4903.

Please feel free to pass this information on to other forums or clubs.

The best to everyone,
Charlene Babyak
Would you mind if I share your information with a friend of mine up in NY? Marjorie's GSD has DM and she isn't doing well?

Thanks!!!


Gayle
Faith, Ledgie & Scooby
My Bridge Kids: Andy, Abbey, Tasha, Tex, Echo, Yukon, JR, Too, Niki, Bo, Ringer, Kelly, Honey, Mac, Slider & Bruiser
Re: DM dogs- clinical trial in southeast Florida [Re: arycrest] #205450
01/13/12 08:01 PM
01/13/12 08:01 PM
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Los Lunas, NM
Kayos Offline

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Welcome to you!

So sorry about Shelby. Thanks for making us aware of this study. I know there are several DM dogs on the board and the owners are always hopeful that there will be something that will come along to treat this monster.


Kathy

PAM, URO3, UCD, UACH Tidmores Rising Star Lydia "Mayhem" CD,BN,RE,AX,AJP,OFP,P1J,CA,DJ,HT,TKN,TC,CGCU, RATN 4/4/12
Jeli, (Pembroke Welsh corgi) CGC, RATI 5/13/19

Lucky, Wolf, Max, Kayos, Havoc - gone not forgotten. gsdhalo
Re: DM dogs- clinical trial in southeast Florida [Re: arycrest] #205537
01/14/12 02:59 AM
01/14/12 02:59 AM
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starrchar Offline OP
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starrchar  Offline OP
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Gayle,

Feel free to share this information with anyone who may benefit from it. Nothing would make me happier than to see these precious DM dogs helped. THe lab that is initiating this clinical trial is Renovocyte (Renovocyte.com), so your friend may want to contact them directly. Dr. Zacharias is the the contact person. I think she is out of town until January 24th. If your friend needs more info, please let me know. It is my understanding that there are still things that need to be put in order before this trial begins, so I'm not sure exactly when it will start. Soon, I hope!

Let me know if there is anything I can do.

Charlene


Shelby- LC GSD rescue~ CGC, Certified Therapy Dog
Josey Wales- Shiloh Shepherd rehome~ CGC, TT, Certified Therapy Dog
In loving memory of GSD Bruno 1993-2007
In loving memory of GSDs Schatzie, Lady, Arnie and Allie
Re: DM dogs- clinical trial in southeast Florida [Re: starrchar] #205562
01/14/12 04:36 AM
01/14/12 04:36 AM
Joined: Jan 2010
Posts: 19,670
Northern CA
MaxaLisa Offline

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welcome

Thank you so much for passing along this information. I've put a link to this thread in the DM sticky, in case anyone trips over it.

I am very sorry to hear about Shelby, and sure do hope for a positive outcome in the study. Sounds like you are doing absolutely everything possible and I hope for the best for you two.

If you find out anything more about DNA fistula testing, do let us know.


MaxaL (aka LisaT)

Jazmine, mini-mix, 10/18/2011
Max-n-Indy
Max, 5/2001-2/2012, RIP my partner, my Regal Boy
Indy, 5/1997-10/2010, RIP my friend, my teacher

Health Index
K9 TBD info and Tick List Links
http://www.rabieschallengefund.org/
Re: DM dogs- clinical trial in southeast Florida [Re: starrchar] #205568
01/14/12 05:08 AM
01/14/12 05:08 AM
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Central Florida
arycrest Offline
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Originally Posted By: starrchar
Gayle,

Feel free to share this information with anyone who may benefit from it. Nothing would make me happier than to see these precious DM dogs helped. THe lab that is initiating this clinical trial is Renovocyte (Renovocyte.com), so your friend may want to contact them directly. Dr. Zacharias is the the contact person. I think she is out of town until January 24th. If your friend needs more info, please let me know. It is my understanding that there are still things that need to be put in order before this trial begins, so I'm not sure exactly when it will start. Soon, I hope!

Let me know if there is anything I can do.

Charlene
Thanks Charlene I'll send it to her tomorrow! Sure hope it's successful!!!


Gayle
Faith, Ledgie & Scooby
My Bridge Kids: Andy, Abbey, Tasha, Tex, Echo, Yukon, JR, Too, Niki, Bo, Ringer, Kelly, Honey, Mac, Slider & Bruiser
Re: DM dogs- clinical trial in southeast Florida [Re: arycrest] #206016
01/17/12 02:12 AM
01/17/12 02:12 AM
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marjorie Offline
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I will follow this with interest. Missie T is not doing well at all with her DM at this time. She is also on an experimental program, from Dr Clemmons, on which she was doing amazingly well, but it is not a cure. The program can do no harm, but we werent sure if it would help. It DID help in an almost unbelievable way for 7 months! It buys quality time but her DM has begun advancing again. She was down before beginning the program, and once on it she was able to get up on her own, could stand on her own, and actually walk which she could no longer do on her own at the beginning of the treatment. She rallied for 7 months on it!! She has been doing her potty outside, is cheerful, has a great attitude and she is eating well. There have been zero negative side effects in the 7 months she has been on it.:) Up until last week, each time her treatment was administered, she would get up on her own and I only had to lightly hold her up by her rear end harness. She was good like that until the night before she was due for treatment, then she would crash. With the administration of the treatment, she would be good until the night before the next treatment. We are possibly going to be upping her dosage in the hopes it will help. Sadly, I am not at liberty to discuss the details at this time, however, as Dr C's work has been stolen by other researchers in the past. He always dealt with an open hand and an open heart via his website, but sadly, he cannot play by the rules he used to live by as the other players have dirtied the playing field frown

Please do keep us posted as to how the program you will try is progressing. I am always hoping to learn something new.

I do not personally believe, however, that DM in the GSD is ALS. ALS can begin anywhere in the body and that is not the way DM presents. It always presents first in the rear, never anywhere else. I do believe the DM of the GSD is unique to the breed.


www.gsdbbr.org (German Shepherd Breed Betterment Registry)
a health registry for German Shepherds --> Be proactive!
www.mzjf.com (Home of the DM Support Group)
Re: DM dogs- clinical trial in southeast Florida [Re: marjorie] #206025
01/17/12 02:50 AM
01/17/12 02:50 AM
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marjorie Offline
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Well, tried to add some facts to my post but it was too late to edit it, so here is what I was going to add...

"ALS does not affect a person's ability to see, smell, taste, hear, or recognize
touch."

You can pinch the foot of a dog with DM, and they wont feel it, so how can this
be reconciled with ALS not affecting the ability to recogonize touch?

" ALS Patients usually maintain control of eye muscles and bladder and bowel
functions, although in the late stages of the disease most patients will need
help getting to and from the bathroom.""

In DM, when the hind end goes, so goes bladder and bowel and bowel control...ask
anyone who has had a DM dog if that dog has been able to maintain bladder and
bowel control. The answer is "NO!" Again, how can this be reconciled with ALS,
when DM dogs lose control of bladder and bowel?

" Not all familial ALS cases are due to the SOD1 mutation, therefore other
unidentified genetic causes clearly exist." In fact, only 10-20% of people with ALS have a change to the SOD1 gene.. What about the other 80-90%?

"The parts of the body affected by early symptoms of ALS depend on which muscles
in the body are damaged first. In some cases, symptoms initially affect one of
the legs, and patients experience awkwardness when walking or running or they
notice that they are tripping or stumbling more often. Some patients first see
the effects of the disease on a hand or arm as they experience difficulty with
simple tasks requiring manual dexterity such as buttoning a shirt, writing, or
turning a key in a lock. Other patients notice speech problems-slurred and nasal
speech; or difficulty chewing or swallowing."

Interesting- DM always progresses from the rear, moving towards the front of the
body. I have never heard of a dog with DM having problems with its front end,
front legs, or chewing and swallowing, before it is already down in the rear.

These are just some of the reasons that make ALS a poor candidate to be called DM in the GSD. I cannot speak for other breeds as I am not familiar with DM in other breeds.

It is hard to believe, to those very familiar with DM, that DM is caused by a change to ONE gene (especially when genetically only 10-20% of people with familial ALS have a change to the SOD1). By taking that position, one is denying the undeniable influence of dark dna. Dark DNA, for those who do not know, is basically the concept that other genes influence the expression of the main genes that are thought to control genetic disease transmission. This is also the concept of gene “imprinting” where some genes turn on or off and those influence whether other genes function and therefore create consequences. The presence of a single gene change which does not explain who actually gets the disease is only part of the answer. If you don’t find which other genes determine whether the “primary” gene acts, you are missing the answer.

Known mutations in SOD1 account for about 2 percent of all cases of ALS. ... This means only about 2% of all patients with ALS have the SOD1 genetic change. How can a change to the SOD1, in the light of this fact
(statistics published by the ALS Association) be the sole cause of DM. It cannot be, if 98% of those diagnosed with ALS have no changes to the SOD1. There is no way to determine, at this time, if changes to the SOD1 are a CASUAL or CAUSUAL relationship, and there is a world of difference between the two. Food for thought, at any rate...DM just doesnt present as ALS, not even when you compare test results between the 2 diseases. They are worlds apart frown

I sure would love to follow the progress of people who will try this experimental protocol.. I will find it educational and fascinating.


Last edited by marjorie; 01/17/12 02:52 AM.

www.gsdbbr.org (German Shepherd Breed Betterment Registry)
a health registry for German Shepherds --> Be proactive!
www.mzjf.com (Home of the DM Support Group)
Re: DM dogs- clinical trial in southeast Florida [Re: marjorie] #206026
01/17/12 02:56 AM
01/17/12 02:56 AM
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Northern CA
MaxaLisa Offline

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How do we know that other neurodegenerative diseases, that may start in other areas, for example, in the esophageal region or a paralysis of the digestive tract, are not related to DM, but just initiating somewhere else?

I've sometimes wondered if DM is part of a larger issue, but just begins predominantly in the hind end, but not always?

Last edited by MaxaLisa; 01/17/12 02:58 AM.

MaxaL (aka LisaT)

Jazmine, mini-mix, 10/18/2011
Max-n-Indy
Max, 5/2001-2/2012, RIP my partner, my Regal Boy
Indy, 5/1997-10/2010, RIP my friend, my teacher

Health Index
K9 TBD info and Tick List Links
http://www.rabieschallengefund.org/
Re: DM dogs- clinical trial in southeast Florida [Re: MaxaLisa] #206033
01/17/12 03:21 AM
01/17/12 03:21 AM
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marjorie Offline
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There has not been one documented case of DM in the GSD beginning anywhere other than the rear of the dog. Bloodwork, CSF, EMG, MRI and complete Neuro exams give a complete picture of what areas are affected and where the problems lie. That is why proper testing is so important, and eyeball diagnosis are worthless frown

Routine diagnostics is essential to finding what is causing each disease. There are more things that look like GSDM until you look for the cause. In the end, a thorough necropsy sorts out many of the rest if they cannot be found before death from the disease. Unfortunately not enough people pursue a clinical answer and even fewer perform necropsies at the end to get a pathological diagnosis. Without doing one or both, then most of it is just guessing based upon typical presentations and causes for those presentations. That might have been good enough 40 years ago, but not so much, now. However, profile and signalment, history with clinical signs are how a differential diagnosis can be reached.

Last edited by marjorie; 01/17/12 03:27 AM.

www.gsdbbr.org (German Shepherd Breed Betterment Registry)
a health registry for German Shepherds --> Be proactive!
www.mzjf.com (Home of the DM Support Group)
Re: DM dogs- clinical trial in southeast Florida [Re: marjorie] #206037
01/17/12 03:32 AM
01/17/12 03:32 AM
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Northern CA
MaxaLisa Offline

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I am asking how do we know that the definition isn't broader than the current working diagnosis, which is currently mostly a rule-out disease.

Aquired megasophagus, with no known cause, LP, with no known cause - these are neurodegenerative processes, that are not at all understood, and kinda behave like DM, to some degree, in a different area of the body. From what I've seen, I just don't see the science that eliminates this possibility. I suspect there are some key points that I am missing and clearly don't understand.

Of course, understanding DM as we now recognize it is a huge first step to many of these degenerative processes, whether related or not.

I hope, even if only remotely successful, Dr. Clemmons, at some point, will share his current insights and experimental protocols.


MaxaL (aka LisaT)

Jazmine, mini-mix, 10/18/2011
Max-n-Indy
Max, 5/2001-2/2012, RIP my partner, my Regal Boy
Indy, 5/1997-10/2010, RIP my friend, my teacher

Health Index
K9 TBD info and Tick List Links
http://www.rabieschallengefund.org/
Re: DM dogs- clinical trial in southeast Florida [Re: MaxaLisa] #206039
01/17/12 03:47 AM
01/17/12 03:47 AM
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marjorie Offline
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I am sure Dr Clemmons will share his insights and experimental protocols when the time is right. Sadly, the experimental treatment has limited participants, due to funding frown The horrid economy has greatly impacted research monies, which I am sure will come as no surprise. Right now its a relatively small study- hopefully when funding increases, so will the study. From what I understand, Missie T and the others in the study have experienced similar gains. Tomorrow she gets her treatment again, so I look forward to what tomorrow will bring smile The past two days were good ones. She was able to stand and drink water tonight, being lightly held. Again, its no cure, but I will take quality time, any day smile


www.gsdbbr.org (German Shepherd Breed Betterment Registry)
a health registry for German Shepherds --> Be proactive!
www.mzjf.com (Home of the DM Support Group)
Re: DM dogs- clinical trial in southeast Florida [Re: marjorie] #206040
01/17/12 03:53 AM
01/17/12 03:53 AM
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marjorie Offline
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FYI: Dr Clemmons has moved his site. The links to his old site no longer work. The new Neurology site is:
http://dog2doc.com/
The url of the DM site is:
http://dog2doc.com/neuro/DM_Web/DMofGS.htm

The entire site is not yet complete but he got the DM part of the site up and running for those with DM dogs. Please make note of the new url.


www.gsdbbr.org (German Shepherd Breed Betterment Registry)
a health registry for German Shepherds --> Be proactive!
www.mzjf.com (Home of the DM Support Group)
Re: DM dogs- clinical trial in southeast Florida [Re: marjorie] #206045
01/17/12 04:10 AM
01/17/12 04:10 AM
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starrchar Offline OP
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Hi Marjorie,

It is wonderful that your Missie T had a good response to the Dr. Clemmons protocol, but I'm so sorry she's not doing well right now. It is so distressing to see our beloved dogs decline and it seems to happen so quickly sometimes. It is really hard to say how much Shelby has been helped because she started it shortly after the diagnosis and was still moving very well. She has more or less steadily declined since she was diagnosed with the DM. My concern right now is that today Shelby is not doing well and I don't know why. I am hoping it is temporary... I think I'll up the dose on her meds some, as long as she can tolerate it.

You make a lot of good points about ALS and DM and I am not in any position to respond because I lack the knowledge to be able to do so. The research vet from Renovocyte is at a conference right now, but I will email her to ask for clarification on this. She did not say the DM is ALS in dogs, so I apologize if that is how it came across. She just said they are closely related. I guess that can mean quite a few different things. It is my understanding that ALS is similar to DM in that they are both auto-immune neurological illnesses.

As far as DM mimicking other diseases, I think in older dogs it is more likely than with the younger dogs. My dog is young, has very good hips and has no other issues. I realize x-rays will only show so much, but they were 100% normal, no arthritis or abnormalities. THe DNA test showed she was at risk/affected. There is no doubt she has DM, according to my vet. She sees a lot of it in her practice. She is a rehab vet and she went to U of F and worked closely with Dr. Clemmons during her training. A large part of her pratice consists of dealing with dogs that have neurological issues of one kind or another. She works closely with a neurologist on many of her cases. With symptoms as classic as Shelby's, she saw no point in puting her through an MRI or any other test that requires sedation. She also said that anesthesia can have a detrimental effect on a DM dog and quickly worsen the condition. Honestly, I don't want to have to put my dog through it unless it is absolutely essential.

I will keep everyone posted on this trial. As time goes on I will learn more about it.


Shelby- LC GSD rescue~ CGC, Certified Therapy Dog
Josey Wales- Shiloh Shepherd rehome~ CGC, TT, Certified Therapy Dog
In loving memory of GSD Bruno 1993-2007
In loving memory of GSDs Schatzie, Lady, Arnie and Allie
Re: DM dogs- clinical trial in southeast Florida [Re: starrchar] #206051
01/17/12 05:32 AM
01/17/12 05:32 AM
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marjorie Offline
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Prayers for Shelby!!! I know how devastating this disease is- this is my second go round with DM frown I know your vet studied under Dr C-I wrote him about the trial and asked him to look into it for me. I dont know if it would be contraindicated, with the treatment Missie T is receiving. Missie T was also diagnosed at an early age, but because I had been down that road before, I knew what I was seeing long before another would have made the catch. As a result, she probably started the program at least a year to a year and a half before anyone else would have caught the signs, they were so subtle. I believe that is what has enabled her to reach the age of almost 11 yrs old.

I agree the tests carry their own risks. I lost my boy, Joss, when he went for an MRI- he developed aspiration pneumonia from the procedure, developed SIRS (system inflammatory response syndrome) along with sepsis, and I had to euthanize him as a result. It broke my heart, especially since the reason he had the MRI to begin with was a result of a misdiagnosis frown The contrast dyes in these procedures are inflammatory in and of themselves, so yes, that can exacerbate the situation frown The flip side of the coin is that there are so many conditions that mimic DM, its really hard to know what you are dealing with, without the tests. There is no right or wrong, and no one is omnicient, so each person has to go with their gut feelings, in relation to the testing.

If you up the meds, do it gradually. Missie T can no longer tolerate the NAC. I went back to the original dosing, for 2 weeks at a time, when she started losing ground, several times, and it always gave her a bounce. However, after 6 years on it, her stomach wouldnt tolerate it anymore. I switched her to alpha lipoic and she is ok with that, although the NAC is a much better choice. I think she really started losing ground when the NAC was withdrawn, but I had no choice as it was tearing up her stomach after so many years.

I will keep Shelby in my thoughts and pray she will fight the good fight... I hope the trial will begin soon, and that you will see at the very least, stabilization, and hopefully improvement. Please do let me know, as I am also quite interested in learning all I can about this horrendous disease. Hugs and belly rubs to Shelby, from me, Missie T and brat boy Casey James.


www.gsdbbr.org (German Shepherd Breed Betterment Registry)
a health registry for German Shepherds --> Be proactive!
www.mzjf.com (Home of the DM Support Group)
Re: DM dogs- clinical trial in southeast Florida [Re: marjorie] #206052
01/17/12 06:02 AM
01/17/12 06:02 AM
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Northern CA
MaxaLisa Offline

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Marjorie, thank you for the updated site, that's helpful.

Interesting about the alpha lipoic acid. You and I discussed that supplement before, and your feelings were different about it then, good to know it's helpful, makes a lot of sense to me.

DM, per Clemmons' site, is defined to be a lower spine issue, at least the way it's currently written. Interesting that's an immune complex disease, and associated with an increase in the thing that breaks down acetylcholine. Wondering if that signifies a breakdown in the way that this neurotransmitter is used or processed, or shows an increased need for this neurotransmitter that the body is trying to crank out as fast as it can and can't keep up.

DM only being considered with hind end weakness tells me that there is a possibility that something similar could happen in other places in the spine, unless there is some other research that says otherwise. Maybe they will call it something else, but it still might be the same process. Acetylcholine is important to just about every muscular function in the body. As an example, GSDs are listed as being susceptible to megaE and myasthenia gravis, both (different) disorders of acetylcholine and the immune system. What I find interesting here, is that although they are all different processes, these issues of acetylcholine, etal., seem to be an issue with GSDs.

There are a lot of drugs that are acetylcholine inhibitors. Wonder if they hurt or help DM dogs. Maybe they don't matter, but it seems that they would.


MaxaL (aka LisaT)

Jazmine, mini-mix, 10/18/2011
Max-n-Indy
Max, 5/2001-2/2012, RIP my partner, my Regal Boy
Indy, 5/1997-10/2010, RIP my friend, my teacher

Health Index
K9 TBD info and Tick List Links
http://www.rabieschallengefund.org/
Re: DM dogs- clinical trial in southeast Florida [Re: MaxaLisa] #206102
01/17/12 04:19 PM
01/17/12 04:19 PM
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starrchar Offline OP
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I am glad I posted on this board. I am learning a lot on this thread alone.

Majorie, I might have missed something, but has Missie T had DM for 6 years? If so, isn't that close to a miracle? Gosh, I first noticed a little wear on Shelby's back nails in October 2010 and finally took her to the vet in January 2011. She started Dr. Clemmon's protocol shortly after the DM diagnosis. Even prior to the nail wear I thought I noticed a very sublte hitch in her back end. No one else could see it though. Anyway, I would have to say that compared to Missie T, Shelby probably was not one of Dr. Clemmon's success cases frown. But, I have no regrets and will continue giving it to her until the clinical trial starts, at which time I have to stop it.

MaxaL, As you have probably already realized, I am by no means an expert on DM, but am trying to learn as much as possible. You mentioned DM affecting only the back end. It is my understanding that the hind end is where it always starts, but it eventually travels to the front end and may also affect the diaphram. I know of two DM dogs that were euthanized due to being unable to breathe because the diaphram was becoming paralyzed. One was not even down completely. It seems every dog is slightly different.

I think some of the harder things with disease is that you just don't know what's coming next, when it's coming, to what degree and ultimately, knowing when is it time to let go. I just love my girl so much and she has such trust in me to do the right thing for her. I don't want her to suffer, but I don't want to let her go before it is time, whatever that means. This past year I lost my precious mom to ovarian cancer and my oldest sister to a rare lung disease, so to think about enduring another loss of a beloved family member is just so hard...


Shelby- LC GSD rescue~ CGC, Certified Therapy Dog
Josey Wales- Shiloh Shepherd rehome~ CGC, TT, Certified Therapy Dog
In loving memory of GSD Bruno 1993-2007
In loving memory of GSDs Schatzie, Lady, Arnie and Allie
Re: DM dogs- clinical trial in southeast Florida [Re: MaxaLisa] #206110
01/17/12 04:37 PM
01/17/12 04:37 PM
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marjorie Offline
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Lisa, alpha lipoic is a second choice to NAC. NAC is far more effective. I can see the difference between the 2 of them, clearly, having used both for Missie T. The alpha lipoic is a distant second choice, IMHO. However, its better than nothing. I havent seen any improvement with it, or any stabilization as I did with the NAC, and she has gotten worse since she is off the NAC. However, I guess it is better than nothing. I am afraid to give her nothing frown

As far as diseases being related, or stemming from one problem rather than another, well, I guess all diseases could be swept into a broad category of an immune system failure. However, the etiology of different diseases, the course, the presention and the diagnostic tests for that condition is what makes each disease unique. For example, a condition affecting the upper portion of the spine, possibly mimicking DM, but starting in the cervical area is Wobbler's disease. There are different diseases affecting different portions of the body, and they cant all be lumped into one neat catetory and it doesnt make them related. That is why there are specific tests for specific diseases. That being said, it is quite possible for any dog, as any human, to have more than one condition at a time. However, the ailment/ailments, be it multiple or singular have their own unique etiology. It is believed that dogs with DM have a greater incidence of perianal fistulas,and vice versa. However, DM is not PAF nor is PAF DM. If the condition affecting the dog had a different etilogy than DM, simply put, it would not be DM, but in fact, an additional/another disease which fit the etilogy of that particular disease, running concurrently with the DM. DM does not present in the larynx or esophogus-in fact, that is the LAST place it goes, AFTER the dog is already down in the front and the rear. That is not the course and presentation of DM, but rather another disease. Thus the diagnostic tools to help rule in and rule out other diseases. A rose by any other name is still a rose, and in order for a disease to be found, etiology and diagnostics are used for diagnosis. You cant call a chest cold "pneumonia". There has to be a certain set of criteria utilized to make a diagnosis. I suppose one call it whatever one wants to call it, but that doesnt mean the label is correct. To make a correct diagnosis, again, one must stick to the facts and follow testing procedures for that particular condition.


www.gsdbbr.org (German Shepherd Breed Betterment Registry)
a health registry for German Shepherds --> Be proactive!
www.mzjf.com (Home of the DM Support Group)
Re: DM dogs- clinical trial in southeast Florida [Re: starrchar] #206117
01/17/12 05:52 PM
01/17/12 05:52 PM
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Mary Jane Offline
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Mary Jane  Offline
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Joined: Feb 2010
Posts: 2,976
Charlene and Marjorie and Everybody,

I am really glad that this thread was started to discuss origins and treatment of DM. I looked quickly at the clinical trial Renovocyte is conducting and it seems to be a different source of pluripotent stem cells than others use. I think there is evidence elsewhere that some stem cell therapy really helps in DM-but I think that it must be stem cells purified from the patient himself.

It's wonderful that some dogs have success with Dr. Clemmons' protocol. His DM page itself is out of date, I think-not to say the approach is incorrect. There he raises the possibility that DM is similar to multiple sclerosis in people. I am pretty convinced by the Coates study that well-defined DM (at necroscopy) requires the SOD mutation and, as mentioned here SOD mutations are highly associated with familial ALS in people. So, the specific SOD defect in several inbred dog strains is a strong risk factor for DM, but there are other contributors, since not every dog with homozygosity for the DM defect develops disease. Physicians are so interested in looking at DM because it is a reasonable model of familial ALS even though most ALS is sporadic. If a treatment worked for one version of the disease, it might also be applicable to the other.

I hope the discussion continues so we can learn from each other.
Mary Jane

Re: DM dogs- clinical trial in southeast Florida [Re: marjorie] #206120
01/17/12 06:09 PM
01/17/12 06:09 PM
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marjorie Offline
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Charlene,

Yes, Missie T has had DM since she was 4 1/2 yrs old. She will be 11 in March, and I fully intend for her to be celebrating her birthday. I refuse to be negative, although admittedly my heart is in my throat. She one of the rare cases to present before 5 years of age. The earliest documented case of DM was at 3 yrs of age. However, when presenting at that age, the disease goes into remission, after presenting in said subjects, only to reappear at age 5, progressing like gang busters. There was another dog in my support group that also had DM for 6 years also who had all the diagnostic tests. It was also the gal's second DM dog. Once you have a dog with DM, you become paranoid watching for the subtlest signs in your other dogs. Because of the heightened awareness, one acts sooner rather than later to get their dog diagnosed and on the treatment program, if one wants to slow the progression of the disease. Its always more successful if DM is caught in its infancy, rather than later in the disease when it is harder to slow the progression of the disease. The other dog walked until she was 13 years old, diagnosed at 7 yrs of age until they were in a horrid automobile accident, and she never walked again, after that time. The stress of the accident probably sent the disease in motion once again. Stress is deadly to DM dogs frown

I question whether or not the dog you mentioned having trouble breathing before it was completely paralyzed front and rear didnt have another condition running concurrently or subsequent to DM. DM always moves forward, so it would be highly unlikely that DM caused the breathing problems before the dog was paralyzed front and rear. Just because a dog has DM does not mean it cannot have other problems, and it does the dog a disservice to chalk everyhting that happens as being caused by DM. There is a course and presentation with DM, and having breathing problems before becoming paralyzed front and rear is just not the way the disease progresses. My guess is that the dog had an additional problem.

You are correct in that noticing scraping nails is not the earliest sign of DM. Hitches in gait, or balance problems are an earlier signalment. Of course, that can be so subtle, unless one is gripped in the clutches of paranoia, as a result of living with a prior DM dog, one wouldnt notice or be on the look out for signs.

Again, best wishes for Shelby, and please do keep me updated on the study and how she does on the medication.


www.gsdbbr.org (German Shepherd Breed Betterment Registry)
a health registry for German Shepherds --> Be proactive!
www.mzjf.com (Home of the DM Support Group)
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