9 months today! Seeing neuro tomorrow! Give me your thoughts

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9 months today! Seeing neuro tomorrow! Give me your thoughts

Postby Gamindsoc1509 on June 17th, 2014, 10:40 pm

Hi all,

I will try keep it brief.

9 months ago my twitching started. It was after 3 months of being unwell, bronchitis, etc. It started off as just sporadic but has since settled in a specific form.

I saw a neuro 1.5 months after twitching started. All he did was reflexes and looked at me. Dismissed me as anxious and told me to get on with life. He was very experienced but had a crappy bed side manner.

Based on the post here (from Dr Eisein I think?) I decided I'd see a neuro around the 8 month mark for a final evaluation and then be on with life. That appointment is actually tomorrow in Sydney with Dr Stephen Reddel.

Basically my twitching is 24/7 in my feet. Here and there in my calves, and then I get body wide twitches. Little flutters, not so much hot spots in random places everyday. I haven't been stressed about it for around 3 months or so? They settle down when not stressed but the feet always go 24/7. Oddly enough both feet twitch but I can feel the ones in my right foot sometimes but never in my left, not sure why. But if examined, both are going off.

The only way it affects me is my big toes (Where the twitching is) are prone to cramp if I train barefoot or place them awkwardly. However I've only had a full blown cramp actually happen once in the year of this going on

Twitches get worse from excercise, stress, caffeine, alcohol or lack of sleep.

Regarding tomorrow, if he says I really don't need an EMG, should I push for one? Or am I ok without considering it's been 9 months now? Also what are your thoughts on my issues?

Thank you all, this will hopefully be over for me very soon! Stress has only come back the last 2 days with this *beep* appointment !
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Re: 9 months today! Seeing neuro tomorrow! Give me your thou

Postby Yuliasir on June 17th, 2014, 11:25 pm

Having 9 month without any deficite is really enough by consesnsus to go on with life.
I think, if you would have normal clinical (and we know that clinical exam if done by MND experienced neuro especially) would result in certain suspicious findings even when the patient has no idea of any deficite yet), and f the doctor would not insist on EMG then usually there is no point to pursue it. Usually BFS population undergoes EMG only in order to get fuel for the future doubts :) EMG with the negative result in terms of MND wouold not resolve twitches. Therer is something in our body which gets irreversibly immpaired in the course of BFS but fortunately this does not affect operation of vital brain centers or does not lead to disability. Looks like it is some neural damage still becasue it is slowly cured and prone to relapse. But anyway it is not malignant.
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Re: 9 months today! Seeing neuro tomorrow! Give me your thou

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