Beginning the journey

[Clearwater AL]

I have been seeing a neuro doc for almost a year now. It all started with very noticeable weakness in my left leg. No pain. Then unbearable leg cramps began to occur at night in the left leg then to the right while sleeping. I noticed that my upper leg muscles never seem to relax while laying in bed. They always seemed firm. The then twitching. Climbing stairs became a real struggle before I would get to the top. Then I noticed carrying a 20lb
of charcoal was a struggle with my arms and it would add to my leg muscle weakness which I had never experienced before. My neuro doc prescribed Baclofen which was like
blessing to me... it stopped the cramps and twitching and the headaches which were
getting bad also. Then I had a couple of choking experiences, one very embarrassing in a restaurant. I am now very careful swallowing but I notice every time I do swallow. I was
admitted in the hospital with breathing difficulties and spent an hour on a 'by-pass" breathing machine. I am now on an inhaler (Ambicort). I have been diagnosed with Carpal
Tunnel Syndrome in both arms but with no pain but just weakness. Now when I go up and down stairs with my canes I notice my upper leg muscles qwiver. None of the symptoms are better but seem to be slowing getting worse. My leg calfs are much smaller than they used to be. My forearms are smaller than they used to be. When I walk my big toes do not point up but down. During my last 2 Babinsky tests my toes came up and spread rather than arch down. No diagnosis of ALS yet but I believe I'm on the long journey
I've read about from others... some going 2 or 3 years before a diagnosis. If it's not ALS
I will be grateful but I'm beginning to wonder what else it could be. It seems my muscles
for now will respond but quickly go weak if I try to lift and hold something in place.
Just would like to know what journey I am on... unknowing is beginning to get to me.

 

[pearshoot]

don't rush into any carpal tunnel surgery. emg may show it but there may be other factors. I was sent to hand surgeon and she said yes there is carpel tunnel but something else is going on. same month diagnosed with als. also met a pals that had carpal tunnel and cubical tunnel surgery lthen diagnosed with als

 

[Clearwater AL]

Thank you for the info concerning carpel tunnel surgery. I have been to the ALS Clinic at Duke University. No diagnosis of ALS. But... it was not ruled out at that time. At this time my neuro doc has not ruled it out yet either. Had a swallowing test and the Doc said I have a muscle in my throat that is not getting a signal from my brain. Pulmonary Doc wrote that my breathing difficulties appear to be neuro-muscular related. Don't mean to offend anyone or hurt their feelings saying this... no diagnosis of ALS is hope but until you get a diagnosis of "something" the frustration of not knowing while symptoms are not
improving is an ordeal itself. (Over one year now in the diagnosis process.) I have not had an MRI with contrast yet. Is that important? Have had two EMGs, second different than the first. Have been reluctant to join the forum because I tried to dedicate myself not to think about it but curiosity has prevailed.