Not convinced

[North Bay ON]

I have had 3 MRIs, an EMG and some other type of nerve testing and blood samples. Lost use of my left foot (drop), twitches everywhere for approx 8 months, using cane however doctor is asking for walker. Neurologist says nerve damage everywhere. Difficulty walking, muscle deterioration, talk ok. I’m freaked and have not bought into ALS at all. Anyone out there that can can chat about this?

 

[Nikki J]

We do advise everyone to get their diagnosis from an ALS specialist and have a second opinion.

that said, a lot of us have trouble believing it. We had a thread a couple of years ago where a number of us shared that we asked our neurologists even after a year or more whether they were sure. I have done it myself more than once and I am FALS

and at first denial is , if not universal, very very common.

 

[Clearwater AL]

North Bay... Your Bio says "PALS".

"Neurologist says nerve damage everywhere." ??

We've told many... twitches all over often point away from ALS.

What did your EMG report say at the bottom... Summary/Conclusion?

Have you been given a confirmed diagnosis of ALS?

Maybe tell us where you went for the diagnostic process. Who?

The more intro info helps those who may help you in the future.

 

[North Bay ON]

Didn’t see my EMG report. It was sent to Neurologist. Neurologist says nerve damage everywhere. Mr Dr and Neurologist tell me they believe I have ALS. I don’t. I am awaiting my call to go to Sunnybrook in Toronto to see Dr Zinman. The MRIs did not show any real damage or support MS.
Clearwater, are you a Neurologist or specialist of some kind?

 

[ShiftKicker]

Hi North Bay, welcome to the forum. I think the experiences of those of us in Canada can be a bit different with regards to doctor's reports and emg results, Al. I have yet to see an actual emg readings chart and only get a summary if I ask my GP for the report after my ALS clinic appointments. I'm glad you're getting a second opinion at Sunnybrook and I am hoping they have another answer for you.

If you are in need of some resources to help with the right questions, there are a couple links here that might help out: Resources

 

[Clearwater AL]

North Bay... no one has to be a Neurologist to ask a new poster for some
intro info.

Just going by what you posted and what we have told many on another
sub-forum... "twitches all over often point away from ALS."

"tell me they believe I have ALS"

Key word to me was "believe" yet your Bio states PALS. Usually the PALS
designation is for those who have a confirmed diagnosis.

Didn't mean to strike a nerve. Whatever... it's good you're going to be
examined at Sunnybrook

 

[Mon]

Hi North Bay

My father sees Dr.Zinman at Sunnybrook. The clinic is very good. He is an expert in the field and would be considered a specialist. My dad saw a general neurologist first and he did the first EMG and then a MRI and blood work. After further testing failed to explain the nerve damage, ALS was mentioned and he was sent to Dr.Zinman at Sunnybrook. Dr. Zinman will redo a EMG( or a intern might perform it and Zinman reads results). Dr.Zinman offically gave the diagnosis to my dad. The clinic has been very helpful in so many ways. Its still not easy subject matter in our family to all talk about, its hard to believe. We were pretty freaked out too and still are some days.

 

[Janders]

Dear North Bay, Reading your post took me back to my husband's first diagnosis last January. We took the same journey of multiple tests until we reached Columbia Neurological Institute. They stated similar things as you heard...nerve damage throughout meaning deterioration in function throughout the body (both upper and lower brain function). It was hard digesting the diagnosis which seemed unreal and also because my husband had other ideas about what was wrong. Weakness has progressed and bore out diagnosis and also gave space for mental and emotional adjustments. We consider these days our good days. My husband has a mobility cart which he likes and a chair lift and we have nice nearby areas for walking, and a trailer to take the chair on the car. He can still brush his teeth and feed himself and transfer and so has some independence. We celebrate our 33rd anniversary tomorrow and happy he can use his chair to reach a nice venue. Still, the sadness is inescapable. Please know you are not alone.