Struminscott
New member
- Joined
- Aug 1, 2017
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- 3
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- Other
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- Country
- US
- State
- CA
- City
- San Diego
All,
I am looking for a little input from you kind folks. I will try to be brief.
I am a 55 year old male currently in hospital suffering with a NMD which is yet undefined.
History: 9 weeks ago I noticed faciculations in my left calf and a few days later it was in right calf. I was already having some issues with my right hand (like using keys for a few days). I blamed that on my neck as I previously had, 3 months earlier, numbness in the ring and pinky finger and pain in arm and back which came from cervical disc degeneration according to the X-ray.
Within a week though I could not type and could barely write my name. I had terrible tremors in both hands along with cramping that bent my pinky of the right hand up. I lost all my balance and could not walk a straight line or stand on one foot. I had no feeling off and on in my right toes. I had some vertigo as well. I could not even touch my nose with my index fingers as I would completely miss it and hit my cheek instead. I went to urgent care. The Dr suspected MS or ALS and did lots of blood work and ordered an MRI. The MRI was clean. I had an EMG and NCV the next day with a neurologist which didn't show any denervation or renervation and only some neuropathy from the disc narrowing in my cervical spine. He called it "essentially normal". I started to recover and got my balance back and the ability to type and write but the tremors in hands and fasiculations in legs stayed.
I had complete insomnia for the first three weeks. I had fasiculations in right arm but only when hand was extended open. When I made a fist they stopped.
A couple weeks ago I got a terrible rash that hit my thighs. They biopsied it thinking it was vasiculitus but instead they said it was an autoimmune response to a virus or infection. That cleared up with steroids. Dr thought maybe it was the cause of the neuro issues.
About 10 days ago the faciculations spread all through my entire body along with some myclonic jerks when I sleep. I had tingling in lips and tongue and my voice was horse. I ended up in hospital and they did lots of tests including another NCV EMG which was about the same as the first one 7 weeks earlier. Only difference was she thinks I have a nerve pinch in my right elbow. Fasiculations are really bad but they sent me home saying there was nothing else to test for.
Now a week later I'm back in the hospital with the same rash and some serious muscle atrophy in hands, legs, back and arms which has probably been going on since the beginning of this. I can walk and balance but the muscles are definitely atrophying and most of them are twitching. The Drs see this but don't know what is causing it. They twitch but still work. The doctors put me on 5 days of IVIG (this is day 2). I didn't have enough markers in blood or spinal fluid for difinitive GBS, or one of it"s variants. Can walk and balance and type but I am really concerned obviously.
So my question for you all would be does this match any of your experiences? Im eating like a horse to maintain weight and now with the atrophy I get bad cramps in legs and hands. I'm hoping maybe someone here has had the same experience and could shed some light. The Dr says I should repeat EMG NCV in a month to check for changes. I could atrophy to zero by then. If it was ALS does it match anything you have heard or experienced? It seems very rapid in advancing on so many fronts at once doesn't it?
I appreciate any input you may have.
Thank you so much from a fellow sufferer with neuro-muscular issues.
Blessings,
Scott
I am looking for a little input from you kind folks. I will try to be brief.
I am a 55 year old male currently in hospital suffering with a NMD which is yet undefined.
History: 9 weeks ago I noticed faciculations in my left calf and a few days later it was in right calf. I was already having some issues with my right hand (like using keys for a few days). I blamed that on my neck as I previously had, 3 months earlier, numbness in the ring and pinky finger and pain in arm and back which came from cervical disc degeneration according to the X-ray.
Within a week though I could not type and could barely write my name. I had terrible tremors in both hands along with cramping that bent my pinky of the right hand up. I lost all my balance and could not walk a straight line or stand on one foot. I had no feeling off and on in my right toes. I had some vertigo as well. I could not even touch my nose with my index fingers as I would completely miss it and hit my cheek instead. I went to urgent care. The Dr suspected MS or ALS and did lots of blood work and ordered an MRI. The MRI was clean. I had an EMG and NCV the next day with a neurologist which didn't show any denervation or renervation and only some neuropathy from the disc narrowing in my cervical spine. He called it "essentially normal". I started to recover and got my balance back and the ability to type and write but the tremors in hands and fasiculations in legs stayed.
I had complete insomnia for the first three weeks. I had fasiculations in right arm but only when hand was extended open. When I made a fist they stopped.
A couple weeks ago I got a terrible rash that hit my thighs. They biopsied it thinking it was vasiculitus but instead they said it was an autoimmune response to a virus or infection. That cleared up with steroids. Dr thought maybe it was the cause of the neuro issues.
About 10 days ago the faciculations spread all through my entire body along with some myclonic jerks when I sleep. I had tingling in lips and tongue and my voice was horse. I ended up in hospital and they did lots of tests including another NCV EMG which was about the same as the first one 7 weeks earlier. Only difference was she thinks I have a nerve pinch in my right elbow. Fasiculations are really bad but they sent me home saying there was nothing else to test for.
Now a week later I'm back in the hospital with the same rash and some serious muscle atrophy in hands, legs, back and arms which has probably been going on since the beginning of this. I can walk and balance but the muscles are definitely atrophying and most of them are twitching. The Drs see this but don't know what is causing it. They twitch but still work. The doctors put me on 5 days of IVIG (this is day 2). I didn't have enough markers in blood or spinal fluid for difinitive GBS, or one of it"s variants. Can walk and balance and type but I am really concerned obviously.
So my question for you all would be does this match any of your experiences? Im eating like a horse to maintain weight and now with the atrophy I get bad cramps in legs and hands. I'm hoping maybe someone here has had the same experience and could shed some light. The Dr says I should repeat EMG NCV in a month to check for changes. I could atrophy to zero by then. If it was ALS does it match anything you have heard or experienced? It seems very rapid in advancing on so many fronts at once doesn't it?
I appreciate any input you may have.
Thank you so much from a fellow sufferer with neuro-muscular issues.
Blessings,
Scott