Hi, I am usually on the rsd forum but hoping I can get some help here, I have full body muscle wasting and a dx of small fiber neuropathy ,,,,the original cause of this is rsd, I don't know what to do! I am losing weight due to muscle wasting, ivig and retuxen did not help,,,

Any thoughts?


Ty
Debbie

Are you able to move around or do any activity? I am not familiar exactly but I remember my rsd pain doctor saying that if I did not move more he thought I was going to atrophy. Now I know it is hard when the pain is so high but a thought that came to mind. I hope you feel better

--that muscle wasting would be involved in a predominantly small-fiber neuropathy, as the small fibers subsume the sensations of pain and temperature and do not ennervate muscle.

If there is muscle wasting as well that implies there is also large fiber involvement of some sort. Large, myelinated fibers include all motor neurons as well as those that involve the sensations of mechanical touch, vibration, and positioning in space.

Of course, one can get some degree of muscle wasting just from lack of exercise, which happens to a lot of people with debilitating conditions. The trick is to see if it related to the condition itself as opposed to a secondary effect.

I have muscle wasting but it is due to the large fiber neuropathy, hereditary. I have not heard of it being related to SFN. I have SFN as well. Have you had an EMG/NCS ? Have they ruled out large fiber?
Also if it is due to the neuropathy it is usually a slow process. What is happening to you sounds very scary. Is there any genetic history of something like this in your family? When you say full body, I take it you do not mean just arms and legs which is the usual progression. How far does your numbness extend?

[QUOTE=debbiehub;991364]Hi, I am usually on the rsd forum but hoping I can get some help here, I have full body muscle wasting and a dx of small fiber neuropathy ,,,,the original cause of this is rsd, I don't know what to do! I am losing weight due to muscle wasting, ivig and retuxen did not help,,,

Any thoughts?


Ty
Debbie[/QUOT
E]

Hi Debbie,
I also have SFN and have muscle wasting. My EMG's show no long fiber involvement. They are trying to figure it all out now. I am also getting PT to build muscle and strength. She said she doesn't believe that I can ever get 100% back but possibly 70-75%. Talk to your doctor about PT. I think it is helping my strength. I have exercises to do at home each day. Plus it makes me feel better emotionally since I am doing something. It's hard because before SFN I was an avid exerciser. I now have trouble with going up stairs my legs get so weak sometimes. I have to hold on to the banister for a bit before I can start walking again.

I too was diagnosed with RSD at first. I went though Ketamine Rxs, and now have been told by every other doctor I've seen (including Hopkins) that I never had RSD. That this particular doctor tells everyone they have it. I kick myself now for putting myself though the ketamine rx's they were rough. When someone tells you they can make you pain free, I think a lot of people in chronic pain would go for it.

I currently, get IVIG and I think it has stopped working for me. In the beginning I did get relief. I will probably stop them. I get really sick from them for about 4 days after.

Be sure you have been tested for MG. My neuro is thinking of doing a muscle biopsy to see if they can find anything. I'm trying to get an apt at the National Institute of Health so we are waiting on the muscle biopsy.

I'll keep you posted if my doctors come up with anything else.

Thanks for all your responses. I do exercises almost everyday at the pool but I continue to get weaker. To top it off , I fell and landed on my shoulder which is getting worse by the day...life is hard!


Ty
Debbie