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Many regular neurologists don't know much about MND, let alone some internist. I would listen to your neuromuscular specialist.

MJP, FWIW I am grateful for your contributions and I am glad you found a possible explanation of your symptoms.

Elementary statistics says c). :cool: In 10000 people, less than 1 has the disease, but the test will produce approx. 100 false positives. Hence, the probability that a random positive actually has the disease is smaller than 1/100=1%.BTW, welcome back Buzz! :)

Wow, that's impressive ToddE. Congratulations, you win! :D) :p Do you get cramps and muscle pain with twitching? BTW, what's your current diagnosis?

MJP, do you also have elevated creatinine? In my case they don't know the cause of this elevation, since my kidneys seem to work properly. Also, since my CK levels are normal, I suppose this should exclude significant muscle damage. However, I'm rather convinced this is somehow connected with...

I challenge you Matt (I hope you are still hanging around here) :cool: Anyone else wants to compete (except for Raindog maybe)? :p :) *************************************************************Summary:- Noticed twitcing on 11th July 2014 in my calves- Constant muscle pain in my thighs -...

You are twitching for almost 10 years, and you are still worried about an illness whose life expectancy is 2-5 years from the onset of symptoms? :eek: To answer your question, yes, that's absolutely typical for BFS.

Interesting. I personally never donated blood after the onset of BFS, but will sure do that. :) BTW, just a few hours ago I posted that my blood test results (among other things) also showed elevated ferritin ().

Hi guys,Yesterday I received my routine blood tests results. I have elevated levels of:1. Haemoglobin (15.4 g/dl, ref. 11.5-15)2. Red Cell Count (5.16 10^12/l, ref. 3.8-4.8 )3. B12 (818 ng/L, ref. 191-663)4. Creatinine (114 umol/L, ref. 62-106)It says on the report that my EGFR result is...

Dear Vince,I am so sorry to hear the bad news, I read your post in tears... You are such a brave and open-minded person; a true inspiration to us all.I wish all best to you and your family and I hope you will have a very slow progression.Regards,Cro

Many thanks for this link Brainiac123, this is indeed very interesting.Recently I have talked to Prof. S. Vucic (a leading MND expert from Australia) about the differentiation between PNH/BFS/CFS/Neuromyotonia/Isaacs'.Here is a part of his response:The terminology in this disorder is all over...

Thanks Docen, that's good to hear. Anybody else? :)

Even though I'm only 8 months into this madness, can I please join the club? ...Started in calves and within one week spread into the whole body. And the frequency of fasics is constantly increasing... Each *beep* second I can feel 2-3 of them. Can't no longer sleep normally. I don't want to...

Great news leroy_blue, congrats! Both of us were very lucky to be seen by her.

Since this discussion doesn't seem to lead anywhere, please stop.

An update: I have just had an EMG and (as expected) it was clean. Acording to the neurophysiologist, there were no any issues in all of the tested mucles (I think 17 muscles were tested this time). I am not sure how is that possible, but EMG didn't even detect a single fascicualtion and, as...

I'm not sure if this will reduce your anxiety, but anyway: 1. You just had a clean clinical and a clean EMG after 6-7 months of (possible) fasciculations. When I say possible, I am not sure if they were confirmed by your neurologist?2. To develop LMN signs after a clean EMG it would take (at...

I should probably use the search engine, but I am too lazy at the moment... I am just curious did you notice any symptoms just before developing fasics?In my case, a few weeks before I noticed them, I have had a terrible pressure feeling behind my eyes combined with dizziness and nausea, which...

Has anyone had a long term relief from fasciculations with Tegretol? If so, on what dosage? What about the side effects? Thanks in advance.

Hi,I also have a constant pain (and fatigue) but only in my right leg, which is the most affected limb with fasciculations. The pain is most pronounced when I stand or walk slowly. Two months ago I began to have strange pinching/tingling sensations in this leg. My neuro prescribed me Lyrica, but...