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victor jara

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Joined
Aug 3, 2011
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16
Reason
Learn about ALS
Country
UK
State
England
City
London
Hi Folks, 44yr old man

I started over a year ago to notice strange sensation in left hand when typing at night. Then both muscle atrophy and weakness when doing tasks like driving(holding steering wheel), holding phone and fatigue when doing repetitive tasks with left hand ,but also right. Also would have like dull ache, cramp and sometime burning sensation in forearm.Tended to be worse at night in beginning but now comes and goes at anytime in day.

Was midiagnosed with carpal tunnel syndrome last April and underwent 2 MRI scan, Nerve study and emg . One mri diagnosed sciatica (Had microdiscectomy for leg pain and numbness in November) . the other tests showed nothing abnormal. I have seen two neurolgists. The first one said 99% no ALS based on emg and nerve study and thought symptoms stress related.. I asked for a 2nd opinnion and saw a motor nerve specialist in London . She did a thorough examination and said the strength was within normal limits in my arms and agreed with first neuro that she did not think ALS/MND.

This was in October and I had accepted that until last few weeks when started to experience difficulty chewing food. No problems swallowing but jaw feels fatigued easily. Also on occasions feel a little breathless when talking.My Dr has said I am suffering from anxiety and I think this is true, however it feels like the chicken and egg. My main worry is that I have significant symptoms in my arm and now eating that have not been explained. The symptoms in my arm have remained consistent pretty much since onset about a year ago with them not seeming to be getting worse.

If not ALS is it possible could be someting auto-imune,metabolic? etc. I have had two lots of blood tests last year with NAD. Any thoughts would be appreciated.
 
One other point. I used to play a lot of squash and had a powerful left arm and the muscle atrophy was very marked.
 
You don't have ALS. Two neurologists have told you that and your new chewing problem doesn't suggest that. What you have -- other than a large amount of anxiety, problems with comprehending medical information that you've been reading, and a vivid imagination -- we have no idea. That's what your doctors are for. Start listening to them.
 
Is it possible that something else is going on.....yes, of course.

Do You have ALS- No, you don't. 2 neurologists have confirmed that you don't...move on to find another reason for your symptoms.

Do yourself a favor, and get a therapist for a month. See if it helps...it should at least reduce your anxiety...and best thing is that they will listen to all of your complaints with an unbiased view.

Also, were you misdiagnosed with carpel tunnel...did your GP tell you that it was a misdiagnosis...or are you stating that it was a misdiagnosis because you are so set on it being something worse?

Good luck to you.
 
Hi Kmendsley, The nerve stady and emg indicated I do not have carapal tunnel. I did go ahead with the decompression surgery in May without any improvement.
Thanks for your comments and I wish you well in your battle with ALS if battle is the right word.
 
Sorry to come back again but just today noticed twitching in my quad muscle above knee. I have tried to mut als out of my mind but with the weakness in facial muscles, smiling chewing etc it has come back . I feel really sick with anxiety.

I know I had all those tests last year but is it common that you can have a clean emg/nerve study and then later be diagnosed. My GP has taken a fresh lot of bloods last week and am waiting results.
 
Victor Jara,
You wrote "weakness in facial musles, smiling chewing etc it has come back"- This points away from ALS. ALS does not remit and relapse...ie. doesn't stay, go away, and come back.

Did you take up the suggestion on seeing the therapist?

Also, your EMG would have been 'dirty' before symptoms even arose...so no...it wouldn't be different a year later to answer your question.

Just wait for blood tests to come back...you can have something as simple as a vitamin deficiency. Your symptoms, again...and still, do not point to ALS.

Good luck to you.
 
Thanks Kmendsley. I am waiting to see a therapist for anxiety and have been started on some meds.

I have found since january that the weakness in the facial muscles has been fairly constant but somedays worse than others. I am finding its more affected by facial expressions smiling etc.

Thanks again for replying and I wish you well in your battle with the illness.
 
You need to quit oogling dr go og le let your doctors figure it out
 
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