Welcome Back! Audience Update on Symptoms

Ezecon75

Well-known member
Dear Friends, New Members and Fellow Suffers:


I haven’t had the opportunity to be part of the forum due to business abroad, but I’m back home for a short time and wanted to post some encouraging news.

I’ve been suffering with symptoms for 9 months and have had three consults and exams with my local neurologist including a lower extremity EMG. While at the time my fasics seemed out of control, they are BENIGN supported by normal physical/motor exams and the EMG.

After 6 months, my local neurologist couldn’t find anything wrong. To put it to rest he referred me for a second opinion at the UCSF Neurology Department. My consult at UCSF was very educational regarding this condition. The physician told me that 99.9% of the patients that
they see with muscle fasciculation do not have ALS.

He then qualified that statement and said that unless there was WEAKNESS and IMMOBILITY ALS is not a disease that they would consider. This comes from a physician who daily deals with ALS patients and sees a wide variation of onset and progression among patients.

Normally, he said he would order an EMG, but felt that my local neurologist was very well trained and experienced since he also deals with ALS at patient clinics. Thus after 9 months, he is very confident that my twitching is not due a motor neuron disease based on past and current exams and the single EMG that was done, but the clincher was the fact that while twitching continues, there is no progression to weakness and immobility.

He then said that after 4 months upon noticing symptoms if you haven’t experienced debilitating weakness, you can have a very high degree assurance that the fasics are benign (with the exception of bulbar onset which has different symptoms and progression). In all the patients with ALS they see he said that the fasics come after severe weakness and wasting has already been established. Most of the time, they spot it without an EMG because the weakness and immobility is so obvious. The EMG is basically is used to assess the extent of the damage and to confirm the disease.

While an EMG is useful to the patient with benign fasics to establish that the anterior horn cells are in tact, ALS is usually detected and spotted upon physical exam since the patient made the the appointment because they themselves notice the weakness and immobility.

The good news came when he told me to go out and play my golf ( I’m an avid golfer) and upon hearing that, my anxiety level dropped and so did my symptoms and they have been on the decline now for three months. Once in a while I’ll experience some strong symptoms, but I ignore them and the more I ignore them the less frequent they become and life is back to normal!
 
Me too! I've been through the same cycle--I'm at my one year mark, and my symptoms are finally diminishing. Don't know if it's the natural progress of my BFS 'flare' (for lack of a better word)....but my improvement definitely seemed to coincide with 'believing' that nothing at all was wrong with me, and finally getting a grip on my overall anxiety.

Life is good again!

PS--I owe a LOT of credit to this board for helping me take back my life--physically and mentally.

Amy
 
Great news Ezecon75, and thanks for sharing your Dr. visit. It's been very mind reassuring to me! :D)

Amy, I've been calling it a flare also! :LOL:
 
Thanks for posting this. It has given me reassurance, especially since my four month mark is next week! My neuro told me something similar -- that symptoms would be present after 3-4 months, and said if I pass my neuro exam when I go back at 6 months I won't ever have to see him again! He didn't even think I needed an EMG except for reassurance.

When they say they can spot it coming in the door, they mean it.

Peg
 
Ezecon75,

It's great to hear a fellow BFSer say "life is back to normal" ! What inspiring words! I hope I can get there myself one day. I do find great comfort in your post. I am at the 5.5mth mark. Still twitching like a nut but no severe weakness or imobility. I'm just now STARTING to believe that all will be OK and reading your post just makes me believe it even more!

Thank you! ....and keep on golfing!

Barb
 

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