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Thread: where do we fit?

  1. #1

    where do we fit?

    Gary, my husband, has Devics. Misdx'd with MS for years. He has a lot of damage after 25+ years of this stuff. My question: where do we fit in relation to forums. Most Devics people are recent dx'd and haven't had the residule effects that Gary has. Spinal cord injury really best fits Gary, but his is not in 1 location. It is in many. WE just can't find where we fit.

  2. #2
    Senior Member skippy13's Avatar
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    Quote Originally Posted by Amelia View Post
    Gary, my husband, has Devics. Misdx'd with MS for years. He has a lot of damage after 25+ years of this stuff. My question: where do we fit in relation to forums. Most Devics people are recent dx'd and haven't had the residule effects that Gary has. Spinal cord injury really best fits Gary, but his is not in 1 location. It is in many. WE just can't find where we fit.
    I should think that the transverse myelitis/MS/non traumatic Sci would be the best forum to start to get the answers you seek. Devics is very rare, but I'm sure there are others out there lurking perhaps. Some of the MS advice may be of use to you and for certain the care section with any B&B or health issues. Life forum with how to deal with the everyday issues that are similar to any SCI. You might also check out the caregivers sections. They could have some useful advice for you. The same with the equipment forum. In other words, just about anywhere you need advice or a place to vent/talk. Welcome to CareCure Amelia and Gary. Hope you find the information and support here that you seek.

    Amy

  3. #3
    Like skippy says you fit in all these forums.

    I am sure share much with many members. There are plenty of us with non-tramatic injuries and diseases of the spinal cord and we are considered spinal cord injured. Devics would be one of these. You may want to do a search on CC for devics and see what you come up with too.

    So welcome to our CCC Amelia n Gary and jump right on in.

  4. #4
    Quote Originally Posted by Amelia View Post
    Gary, my husband, has Devics. Misdx'd with MS for years. He has a lot of damage after 25+ years of this stuff. My question: where do we fit in relation to forums. Most Devics people are recent dx'd and haven't had the residule effects that Gary has. Spinal cord injury really best fits Gary, but his is not in 1 location. It is in many. WE just can't find where we fit.
    Amelia,

    Welcome to CareCure. To make sure that you feel welcome, I wrote an article Devic’s Syndrome: Close to a Cure? just to make sure that you feel included on this site. I also moved this thread to the proper forum Tranverse Myelitis, Multiple Sclerosis, Non-traumatic SCI

    Wise.

  5. #5
    The only problem with "fitting in" is the results of this disease. We are on other forums and I have looked on this on other places, but most people with Devics has not had the length of disease Gary has. His residule of disability is different than most. His is legally blind, total right eye, 20/100 left eye, walks on a cane (barely), and other MS looking disabilities. The difference comes in his digestive problems, probably due to damage over the years. I have seen his whole digestive process slow to a near halt during and attack. His bladder works, he has feeling with it and knows when he has to go and how much, but the spastic schpinter won't let it go. This has been going on for 4 years. His intestines are very flacid. Most of his damage you wouldn't know. He is up and going most of the time, although the down times are becoming more numerous. He uses a manuel wheelchair thoughout the day to get from here to there, but stands and walks some when he gets there. All of this is why with this disease, fitting in becomes a problem. Gary was not dx'd for about 10 years, misdx'd with MS for about 15 years. Then finally a blood test for NMO that came back positive. I would give my eye teeth to see his medical records just for some good reading. LOL

  6. #6
    Quote Originally Posted by Amelia View Post
    The only problem with "fitting in" is the results of this disease. We are on other forums and I have looked on this on other places, but most people with Devics has not had the length of disease Gary has. His residule of disability is different than most. His is legally blind, total right eye, 20/100 left eye, walks on a cane (barely), and other MS looking disabilities. The difference comes in his digestive problems, probably due to damage over the years. I have seen his whole digestive process slow to a near halt during and attack. His bladder works, he has feeling with it and knows when he has to go and how much, but the spastic schpinter won't let it go. This has been going on for 4 years. His intestines are very flacid. Most of his damage you wouldn't know. He is up and going most of the time, although the down times are becoming more numerous. He uses a manuel wheelchair thoughout the day to get from here to there, but stands and walks some when he gets there. All of this is why with this disease, fitting in becomes a problem. Gary was not dx'd for about 10 years, misdx'd with MS for about 15 years. Then finally a blood test for NMO that came back positive. I would give my eye teeth to see his medical records just for some good reading. LOL
    Amelia,

    You are right. We must make sure that what happened people with polio in the 1960's does not occur with Devic's disease. In the 1960's, when it became clear that the vaccine can prevent polio, the disease was pronounced cured but all the people who were disabled by polio were still as disabled. Little research focused on treatments to reverse the effects of polio once it could be prevented.

    We must press hard to ensure that research keeps going on to restore the loss of function associated with Devic's disease after the auto-immune cause is eliminated. In the case of Devic's disease, it is not clear how much of the neurological loss is due to axonal loss or demyelination. The latter will of course require regenerative therapies while the former will require remyelinative therapies. However, both therapies are being developed.

    I did not realize that intestinal problems are a consequence of Devic's disease. That is interesting, if so. On the other hand, before the company Regeneron moved away from neurotrophic factors to cancer, they were trying to develop brain-derived neurotrophic factor for denervation of the gut. This is a solvable problem and I think that it is a matter of making sure that good scientists work on the problem.

    Wise.

  7. #7
    Welcome Amelia, we are a fairly diverse group...lots of different injuries from different causes. I hope you'll find the support you're looking for here.
    "The truth will set you free. But first, it will piss you off." -Gloria Steinem

  8. #8
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    Amelia:

    There is also a Devic's topic on the TM Association Forum. See http://www.myelitis.org/forum/viewforum.php?f=33

  9. #9
    Senior Member lynnifer's Avatar
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    Welcome Amelia! I've been paralyzed since 1985, age 12, with Transverse Myelitis. It left me flaccidly numb from the waist down. I'm now 36.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  10. #10
    I would be curious to know what is happening to the spinal cord with Devics. I know all the demyelination stuff for Devics and MS. I know Gary's cord is atrophic. One DR stated it had narrowed. He had a myelogram years ago after all of his neck attacks. He went into pain when the dye made it to that area. Gary has been paralyzed from the neck down many many times. Most of those attacks, he healed about 80% from. As the disease progressed and his age, he hasn't been able to bounce back from attacks as well. BUt, let me blow your mind...about 3-12 hours before an attack, he gets dramatically better. For instance, he regained a large portion of sight in his right eye which has been totally blind for years, no light no nothing. Within hours, he was totally blind both eyes. He always drags his right leg. One day it started working completely correct and within 3 hours he couldn't walk at all. I would love to know anyone else that does this. It happens just about every time.

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