Migratory Parasthesias and Fasciculations: 8 Months and Counting

Thanks for reading - I have had migratory parasthesias for 8 months, and fasciculations for 6 months. I have also had perceived weakness that is short lived. Am still able to run, carry my two year old and work (I am a surgeon). My neurologist investigated me for MS - no evidence and suspects BFS. I have recently developed significant pain in hands. legs and get a sense of being uncoordinated but am not. Does anyone else get the pain - like hot knives jabbing deep to muscle? THey do not last long but I'm so worried they will get worse. My neuro gave me lyrica to try and it made me all goofy. Has anyone tried carbamazepine for the pain and has it worked (know of small case series in journal Neurology that suggested benefit)?. I'm so scared this will progress and the pain will be unrelenting. I want all to know that even as a doc, I did not feel I was taken seriously by my neuro. Am going to see a neuromuscular dx specialist in the fall.

I am in the process of being referred to a neuromusclar specialist (either USC or UCLA-whoever will see me first). My local neuro (with a PHD in neurobiology from Johns Hopkins) pretty much implied that he thought my complaints of muscle twitching all over (feet, calves, arms, stomach, back, nose, lips etc) were imagined and if not imagined then I must have caused them myself from anxiety. He did an emg and saw no denervation. He suggested my breathing (hyperventilation/overbreathing/releasing too much CO2) may be causing my blood to be too alkaline and thus irritating my nerves). He seemed frustrated with me to the point of anger. Anyway, I empathize greatly with what you are experiencing as I am a little over a month and a half into a similar struggle. It helps to know that I probably didn't do anything to deserve such condescending treatment by doctor. If doctors will treat other surgeons in a dismissive fashion there must be some fundamental widespread misunderstandings out there of how these symptoms can manifest. Good luck in finding answers. I hope to you are able to report reassuring info so.Krackersones

Since you are a surgeon, you have likely investigated this already...but I suggest getting your Vit D levels checked. I have been twitching and having weird symptoms, including terrible muscle pain for almost a year. I finally went to a rheumatologist. Had an ANA, sedrate, CK and CBC done and all were normal. But, my Vit D levels were very low. I am now supplementing 4000IU's daily for 3 months in an attempt to get my level to 40-50. Anything below 30 is considered "insufficient" and I was only at 23.After 5 weeks I am 50% improved. Just thought I'd pass this along in the event it might help even one person LInda

The Lyrica made me goofy also. The low dose nightly gabapentin that initially helped with my sleeping seems to not be working as well lately but it was the only Rx that allowed normal functioning for me.The pain that I had initially sounds similar to yours: a stabbing pain in my back and sides - it turned out to be pressure on my nerves from the rupture of 2 thoracic discs (MRI eval). Neuro thought the CFS could have played a part in the ruptures but it was impossible to tell. I still sometimes get some sharp pains in sides, back, diaphram, and radiating from the hips but not as bad as the inital ones. After they don't scare you anymore it is much easier to deal with them. I suppose they are from more nerve pressure from the cramped muscles and spasms as it feels the same and does respond to therapeutic massage. Yes, my GP who has known me for 30 years was reluctant to send me to the neuro 'God help you if I have to send you to a neuro' were her exact words. So far my neuro sees me as a curiousity and wants to increase my medication... and but I am finally biting the bullet and going to a neuromuscular specialist for a second opinion. Each of us has to be unshakable in the knowledge of living in our bodies - nobody else can judge this for us regardless of their station in life. Don't let them shake you and good luck!

Thanks to all for your replies. Still not sure if carbemazapine is a good idea to try but if my new neuro suggests it, I will let you all know.I greatly appreciate your support.

I get hand pain all the time. I am going to see the top neuro in my area. I have seen so many docs that I am just going through the motions on this one. Its BCFS. Please describe your sxs in more detail. I know you are worried but if we are to help please be more descriptive. Nothing beats Diazapam in my opinion followed by klonopin. Neurontin probably your third best bet or a combination there of. Just remember that for some reason medical professionals suffer this illness more than the general population. Why? I don't know! But if everything bad is ruled out then you will just have to learn to live in your new body. Anyways welcome to the world of BCFS. Something in our environment is causing it. We don't know what it is! Read BCFS in a Nutshell.

juliev,Started with twitches/fasic 7 weeks ago. Has let up some but I was unnerved by some pains in the arms/legs that feel like mild aches to cramps but not the searing type pain you describe. The uncoordination feeling always spooks me but tends to resolve in a few hours. It typically hits my left arm. Had to put a subclavian line in a crashing GI bleeder a few weeks back with a dept full of nurses/specialists looking over my shoulder. Fun feeding a wire in that circumstance when the hands dont want to work. It is wierd regarding the poor coordination feeling, but I can tell when it is resolving. I get numb/tingling sensation like you experience when your foot starts to wake up from falling asleep. This symdrome never fails to disappoint or bore.

Wow - thanks so much to everyone who replied. I so appreciate your input - you have no idea. You really do feel lonely with this ailment. With very little literature on the subject, you begin to question the reality of it all when your BFS starts to scream at you. I SO APPRECIATE other MD input. This is so welcome. TO answer some post q's my pain/parasthesias/ twitches are all very short lived - no more than a few hours - all actually started after I had a very long laparoscopic case that took me over three hours with a very junior assist - I removed two 9cm ovarian dermoids which were very adhesed. Needless to say, I had thumb numbness for almost two months after this - and all the symptoms started immediately thereafter. Weird - maybe some muscle /nerve damage induced this??? Autoimmune? I have hashimotos - my TSH was 300 when diagnosed - in residency and chronically tired so missed signs and symptoms. Thanks again fo rthe support!!!

Your symptoms are very similar to mine. I have also had migratory parasthesias for several months now. That is how it all started with me. The twitches came later. My neuro suspected MS and did a thorough exam (since my mum has a rare neuromuscular disease). I had MRI's, EMG's, evoked potential testing etc. Everything came back normal. I have also seen an internist (I don't have the results yet) and will be seeing a neuromuscular specialist in the Fall.I have a lot of twitching now. I also have pain with mine (mostly in my legs). It is like a gripping/charlie horse like feeling. I also get cramps or pain in other parts of my body. However, the pain hasn't gotten worse and it eventually passes. Some days I also feel like I am weaker or less coordinated in my right leg. Even though I feel weaker or less coordinated, I am definitely not. I still exercise and I have never had a problem doing my 10 km runs or playing soccer.In my case, this all started after an extremely stressful time. I also had a newborn (my 3rd) that never seems to sleep much (she still doesn't!). I often wonder if the stress and sleep deprivation had something to do with it. Good luck. It sounds a lot like BFS to me.

Parasthesias was my 1st symtom and diagnosis, then fasciculations started weeks later. That was over 30 years ago. They, along with other symptoms of BFS have come and gone over the years. Best Wishes, Denise