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lostinburbs

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Joined
Sep 7, 2008
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Reason
Learn about ALS
Country
US
State
az
City
glendale
Hi, I would like some insite on my conditions, because, as like many, I'm quite nervous.

For the past 6 months, i've had pain in my quads, the pain is symetric, both legs...now, lately, it has caused me to feel like both of my legs work funny together, very disconserting, like sometime they will fail...I get twitching every now and then in my feet, legs, arms sometimes my face...I've had an emg 6m ago that was negative, and my neuro wants to do another. I feel tired a lot and now anxiety is starting to overwhelm me and overall I seem to have a lot less 'energy' in my muscles.

Thanks for everyones thoughts in advance.
 
Hi Lost,

I, too, have a 9-month or so history of muscle twitching, weakness, pain, and some other symptoms with no diagnosis yet, and a negative EMG in June. Due to go back to neuro this week and maybe have another EMG done.

Are you being seen by a specialist in neuromuscular disease or a general neurologist? It seems that those neuros who specialize in ALS and related disease are more skilled in conducting the EMG and analyzing the results and also assessing your symptoms. I see you are in Arizona-- are you close to the Mayo clinic? From what I have read, they are pretty much tops worldwide in the diagnosis and treatment of ALS.

all that said, I do not think you should assume you have ALS. from what I have read, it tends to start in one limb or the bulbar region and then slowly surface in other areas. There are also a lot of other conditions that can cause your symptoms and those need to be tested for, as well. have you had a nerve conduction study done, as well as the EMG? have you had an MRI of the brain and spine, blood work, testing of vitamin/mineral levels, etc, etc.?

I know it's hard to reign in one's anxiety amid all these symptoms with no explanation (believe me, I grapple with it almost daily), but please try not to assume the worst.

Good luck to you! Let us know how things turn out.

Sandra
 
Thanks Sandra,

Yeah, I've had a spinal tap and 2 brain mri's, 2 emg's, lots and lots of blood tests...my nero is a generalist but comes from a good practice on NW side (ANI is their name) -- believe it or not, I also have seen the other nueromuscilar (and neurooptical--there are only two in the valley) specialist via Barrows, but it was related to double vision, which, turns out to be congenital...the leg / walking thing is evolving and new...it is symetric -- my reflexes area all good...

Any other thoughts...anyone? I'm very concerned still...I HATE the twitching...
 
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