any suggestions ?

[mike_az]

hi! all
i am M 31 otherwise in good shape....for the past 2 1/2 years i have had unexplained neurological problem...started with twitching in my arm which then spread to all over my body within 6 months...and was then followed with random sharp pain in my muscles all over 2 months later.

went to neuro had EMG after 1 year of enduring all this(june 2009)....it did'nt show much other than re-innervation(thats what my neuro told me) without any denervation...and told me the report was normal...he cleared me as my clinical was fine...blood work showed subclinical hypothyroidism- 6.8...NORMAL now 3.5....and low B12-245...NORMAL now 875....other than that everything was normal.

he put me on various medicines and followed my progress till july this year(thats over one year of various visits to him) ...since then i havent seen him as i am fed up of taking all these medices without any substantial result...everything is in order and still all these symptoms persist.. pain has subsided but twitching is as strong as ever....i dont know whats goin on and neither does my neuro..as he says you will have to live with it.

thanks for reading
Mike.

 

[joelc]

Twitching means nothing and reinervation does not happen with ALS. Who diagnosed you? Your profile states you have ALS and that is not possible.

 

[pops66now]

Hello Mike,
I'm not a doctor or neurologist but it doesn't sound like ALS. I have ALS, but there is no pain.
Just my 3 cents worth.
Wayne

 

[Naeco]

Hi Mike,
Hang in there... I know it can be tough when doctors give up. I'm 32 and doctors always dismissed me because they said I look like I could knock the wall down if I wanted... and they just shrugged off the symptoms. Fast forward a year later I'm going through the same tests again because my Neuro tells me that something must have been missed. It's hard to find a doctor that you can trust... and vice versa. I guess it's just the age we live in.
On the bright side, it's probably a good sign that you're 2 1/2 years into the symptoms with without describing any type of weakness of atrophy(?). I'm sure others will reply that know alot more about this stuff than I do but there are alot of disorders that can cause these types of symptoms. There are a bunch of autoimmune diseases that have similar symptoms to what you described. As well as endocrine disorders. I've been down that road too. High calcium, Vit D defficency, High-T, Lupus tests, etc but nothing on par with the symptoms. I've been guilty of it too but try not to settle on ALS until everything else has been ruled out. Have you already been seen by an endocrinologist and a rheumatologist? Hang in there... It's a long road as I'm sure you already know

 

[mike_az]

hi! everyone...thanks a lot for your replies.

@ joelc...sorry about the confusion...i didnt realise i have marked "i have ALS"....maybe i didnt notice it while registering...will change it.

thanks again.

 

[mike_az]

@ hi Naeco...well i havent seen an endo or a rheumatologist...as my neuro told me thats my symptoms were probably coz of thyroid disorder and low B12...and ya i forgot to mention that i have low Vitamin D as well...but having said that...everything is in order now....my bloodwork 2 months back came normal...vitamins,TSH,B12 and VITAMIN D.....thats what frustrates me ...after over an year of medicinal therapy no results...i guess i will have to endure this for years to come.

 

[Al]

Well Mike, it still beats the crap out of having ALS. Count your blessings.

AL.

 

[Lavender Lady]

You are fortunate to not have ALS. Go enjoy life and forget you ever thought you might have it.

 

[mike_az]

hi! everyone and thanks again for your replies

@Al & Lavender Lady.....ya i guess you are right....but if i could get a precise diagnosis my mind would be at peace....but nothing seems to tell what really is going on after 2 1/2 years ...i guess there are somethings they have not yet discovered , and are not that much interested as they put it in a benign category.

 

[Alyoop]

I know its frustrating not knowing where the twitches and pain are coming from, but after so long with nothing else, eg weakness, I am not sure why you are so worried?
Just count your blessings and enjoy this great place we live in. When I am feeling frustrated, getting about slowly. I just think of the wonderful people here that cant get about at all, and Smile with what I have.

Smile take a step and be thankful for everystep that you take unaided.

Bless You Aly

 

[mike_az]

@ Alyoop...thanks a lot for that...would certainly try and abide by it...well i am not worried about my condition , i have accepted it ....but it would be great if i could get a name for it...

thanks again.

 

[Alyoop]

Mike, it's horrible not getting answers, no matter what's going on. I sympathize, it drove me crazy! Other people words never helped much. But we try. Best of luck