Update - Question

[ktmj]

Hi everyone - have not posted in a while but have been keeping up with everyone.

Over the last few months I've been able to control my fears at a manageable level and life has been good, even with progressing symptoms. As a quick update, my level of weakness has progressed some, muscle shaking increased with exertion, and bothersome after exertion. I perceive that muscle slimming has continued in limbs and shoulders. Fine motor skills are off some, and balance is still affected to some degree but not noticeable to anyone. Doubt I have any clinical weakness yet - I am way past self-testing. Won't even mention twitching other than to say it has increased but it is really the least of my concerns.

I am still highly functional - thank God for that.

Here is possibly a new symptom - some minor burning sensations in my hands, lower arms, and legs. It is not constant, and comes and goes, but as I sit here and type this the upper part of my legs feel like a mild sunburn. This sensation can come and go, and can be accompanied or independent with some minor tingling.

Also, all of my symptoms have been symmetric - no one limb is better or worse than the other that I can perceive. I keep trying to convince myself it is CIDP but of course it could be many things at this point. Still concerned about ALS, but try not to dwell on it.

I guess I just needed to put it down in writing and am open for any perspective on the "sensory" deal. I know there can be mild sensory issues with ALS, but have no idea if this fits any pattern of anything.

At any rate God bless and thanks for reading.

[crystalkk]

ktmj,

When was your last nvc/emg? any abnormalities?

[ktmj]

Last NCV/EMG was 02/09 - clean.

[wright]

KTMJ

Given your symptoms and the clean EMG, it sure sounds like it could be a small fiber neuropathy. They are notorious for escaping detection by nerve conduction studies and many are caused by a vasculitis, which can wreak havoc on many systems of the body. Has that angle been explored by any of your physicians?

P.S. Your story sure doesn't point toward ALS (just thought I'd share).

[awieleba]

ktmj~

Hey there! when you say minor burning sx in arms and legs is that the sunburn feeling or strain burning? Last year, I as well had that sunburn feeling on my thigh on and off. I also had it on my arm, all on the left side. It sometimes felt like a sunburn and other times like a hot water bottle on my leg or hot water running down it. I have also had a burning/aching/stiff like deal going on in my hands/wrists and feet/ankle from the start.

Like you, I am thankfull that I am as functional as I am but still seem to be progressing very slowly. I feel like you in that all my sx seem to be equal and not just one area. And feel the same about the twitches, they do bug me but only because my other sx.

please take care and let me know what or if you find out.

April

[ktmj]

Thanks guys.

wright, no one has brought that up. The burning is relatively new so that has not been brought up to a doc. It's not constant but there for a few seconds or a few minutes, then gone. Sometimes it's persists for longer, and moves around. And of course most noticeable when I am not moving.

April, sometimes I do get that hotspot thing too, but not often. Wouldn't describe it as hot water running though. The more common thing is the mild sunburn tingly sensation. Take care.