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LabradorsRule

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My first neurologist diagnosed me with HIV Associated Vacuolar Myelopathy and didn't think I had ALS (less than a year ago). The second neurologist concurred and all the extensive testing was normal. My I.D. doctor thought I had ALS and just recently I went to a neurosurgeon to find out what all this pain in my back and ribs are. The first thing they indicated was ALS. Right off the bat after a cursory examination. I'm getting an MRI tomorrow and they are referring me to another neurologist.

Just over a year ago I began experiencing weakness in my legs and many other neuro manifestations which pushed me to see a specialist. Now, my legs feel very heavy and my brain feels scrambled mid-step at times. It's as if my brain doesn't know how to respond to my legs. Coupled with weakness in my arms and hands and the visible muscle atrophy. I have many other symptoms, but I'm trying to keep this as short as I can. I feel I am ready for a wheelchair now. It's difficult to traverse a large hospital and I fall frequently. My legs have weakened at an alarming pace.

When my skin went numb from below the waist, all of the neuro manifestations stopped. No more sensations of hot, cold, pinpricks, etc. In a way, this is a blessing. The restless legs were very disturbing and I'm glad they are gone.

I'm certain at this point I have ALS. Overall, I have no pain in my legs at all. My back is aggravated by walking, sitting, standing and just about anything. Do any of these nerve tests have to be abnormal in order to get a diagnosis?

I'm fortunate to be a veteran and I have been reading this website with vigor. I'm so glad for this amazing forum and contributors. Thank you.

P.S. The V.A. did give me new ratings recently for neuropathy in both arms and legs and a few other things. I'm grateful for this because I now have the door open for future C&P's or SMC. Currently, I am rated at 90% IU P&T. I feel very blessed. PVA has been great to work with and they got me up from 70% IU P&T. Every little bit helps.

I will update once I see the neurologist.
 

lgelb

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Labs, I think you're jumping ahead by putting "diagnosed" in your profile. If I am reading correctly, you haven't been. Numbness below the waist with severe rib/back pain sounds nothing like ALS.

You ask if nerve tests need to be abnormal to be diagnosed with ALS, and the answer is yes -- another reason not to jump ahead. Certainly might be time for another EMG, which is used to screen for many kinds of nerve and muscle problems, and I'm glad you're getting new opinions, but that's about all we can say right now.

Let us know how the neuro visit goes.

Best,
Laurie
 

LabradorsRule

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You're quite right. I must have done that last year by mistake. I've edited that. Thank you.
 

ShiftKicker

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Mod note- I've moved this thread to the DIHALS section at this time in keeping with forum procedures.
 
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