2nd neuro opinion visit today

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2nd neuro opinion visit today

Postby lrt6131 on October 31st, 2013, 4:00 pm

Was referred to a 2nd neurologist by my first one & the visit was today. This doctor is considered "the best" in my city for neurological movement disorders (ALS/ MS). One question I flat out asked is a frequent on this website: Can you have twitching before weakness? I was expecting a "no" but instead I got " it is definitely possible". He was asking about all of my twitching--I was telling him how it moves around but is probably 80% in my legs. He said that with ALS the twitching would not stop once it starts in that muscle. I think he found it confusing that I was saying I could have a "hot spot" in one area for a couple days & then it might switch to a different area. He said my neuro exam was pretty normal but I do have "very slight" weakness in my right thumb--which was abnormal on my EMG/NCS--believes its carpal tunnel related at this point. My right foot has sensory issues. Was hoping to feel 100% more reassured but I am left with 90% reassurance. He also said that he believes it's BFS, but it takes 6-12 months of twitching without weakness to really rule out ALS.

What I also find so interesting is that my neuro doctors seem annoyed with my questions--they know I am nervous & I think they think I am just plain crazy. It's very frustrating....
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Re: 2nd neuro opinion visit today

Postby Sadface on October 31st, 2013, 4:51 pm

Oh no. This has worried me too: I have to wait and see how the next 12 months goes!?
And I have it constant in foot.
:,-(
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Re: 2nd neuro opinion visit today

Postby Yuliasir on October 31st, 2013, 11:15 pm

Your doctor forgot to add "in several percent of all cases", and that is the critical difference. For him probably no difference - yes of course , 4-5 patients of every 100 diagnosed with ALS (not ALL patients he sees but only diagnosed) mean "definitely posible" but whsat are the chances, if you even do not have ALS?

My own neuro was the same. She told me definitely 'some bad diseases can start with twitches', and she also want 4 followusp in the 12months. I has missed last one visit, and few days ago it was my second anniversary - still twitching, no weakness. BFS (or 'benign myoclonia' as she wrote in my papers).

I would say 12 months is very very conservative approach, and it makes practiclly really super sure it is not ALS but in fact average time of weakness development in case of presentation with twitcehs, as far as I understand, is around 4 month.
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Re: 2nd neuro opinion visit today

Postby lrt6131 on November 1st, 2013, 1:11 am

Thanks Yuiasir. It just was a mental step backward for me. My legs have been twitching crazy since my appt--almost like when this first started. I know my brain is now over thinking/worrying again--as I lay awake @ 2am! Wasn't expecting him to find a sensory issue in my foot either--just more to worry about. Vicious cycle. Next week is my 1st visit to psychiatrist. Maybe that appt will be my turn around to get through this.
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