Benign Fasciculation Syndrome or something else?

[michelle vilas]

I am a 24 yr old stay at home mom to my 2.5 year old daughter. I am also a vegetarian (2 yrs) and my daughter still nurses only a couple times a day.

Starting approx. 2.5 months ago I had continuous twitching in my left upper eyelid that lasted around 2 weeks.  I woke up one morning and the twitching had ceased in my eyelid and I started having twitching all over my body (except my eyelid).  About 90% of the twitching is occuring in both arches(with cramping) and both of my legs with other twitches t/o every part of my body.  I have seen 2 neuros- the first one gave me 5 boxes of paxil and sent me on my way and the 2nd one (Dr. Jeff Eubanks- Cols. OH) did a thorough exam and EMG- which were both normal.  He reassured me that I did not have ALS or any other neuromuscular disease.  I was of course relieved, but I am still a little concerned.  I have been extremley tired lately and have also started having myoclonus a lot at night.  I don't want to let this control my life if in fact it is a benign condition and I have no control over it.  I just want to make sure that nothing is being missed.  I forgot to mention to the neuro that I had rocky mountain spotted fever 1.5 years ago.  I was put on doxycycline and did fine.  I did not have a severe case.  Can one experience neurological after effects from this disease?  My GP did bloodwork on thyroid, blood sugar and to check for vit/min defeciency and all came back normal. I just want to make sure that there isn't an underlying cause that the doctors may not know to look for.  Thank you so much for your help.

Michelle

[CCF-Neuro-M.D.-JT]

There are long term neurologic complications from rocky mountain spotted fever reported in the medical literature such as weakness, peripheral neuropathy, hearing loss, cerebellar dysfunction and language disorders. But these patients were typically quite sick and stayed in the hospital for an average of 47 days according to one study, which was fortunately not the case with you.

It should be reassuring that a neuro exam and EMG were completely normal as well as routine blood work. If you are having true myoclonus at night and not just twitching, consider a formal sleep study. You may have a sleep disorder, and klonopin can sometimes help. Finally, if you are still concerned that this is something serious, consider following up with your neurologist in 6-12 months (or sooner if the symptoms worsen) or consider another opinion.

[ernie5]

Perhaps the doctor feels that the twitching you have is in affect an anxiety disorder. In my opinion, that is the possible reason as to why he put you on Paxil. All I know about doxycycline is that it is used to treat rocky mountain spotted fever, which you already had, and of course and acne. That is all that I know. I Hope this helps.

[michelle vilas]

I would agree, the 1st doctor did assume it was from anxiety as he shrugged it off with the Paxil, but he was not experienced in neuromuscular diseases he was more of a pain management dr. who I had seen 5 years prior to for migraines.  I quit taking the Paxil after a few weeks because I believe it made me feel sleepy and my legs and arms started jerking during the day, which usually only happens at night.  Thanks for your response.

Michelle

[FloFlo]

Hi Michelle,
I'm anxious to hear what the response is to your question(s). As you may have read on my posting (waiting to hear back as well), I am having identical problems. Twitching started in upper eyelid as well. Then 24/7 in my tricep, then random all over twitching (tricep is now at random times). Cramping in the palms of my hand and soles of my feet started over a week ago (not a sudden charlie horse type, it's more like a tightening/contraction that's there all day). I know that a lot of my other symptoms (weight loss, ampted-out, hair loss...) are due to the MAJOR stress I threw upon myself worrying about the damn twitching and ALS. I am just now going to try Paxil until things settle down in my head. Saw a neuromuscular specialist yesterday, I'll tell you what he said if your interested. Just email me directly. ***@****
Hope we both get back to normal soon.
Flo

[michelle vilas]

Hi Flo.

I'm interested in what the neuro told you.....as long as it is good news!  Can't email you directly at this time, we are in the process of changing ISP's and our email isn't working properly!  

Michelle

[Abbey]

I would be very interested in hearing what the doctor said at your app't the other day. Let me know.

[FloFlo]

Hi ladies,
I wanted to wait to respond until after the neurologist answered your questions. The neuromuscular specialist I saw last week sees most of the cases of ALS and other serious degenerative neuro diseases in the State of Colorado and surrounding states. He told me with confidence (after reviewing 2 emgs from my 1st neuro and conducting the standard exam), that I did not have a degenerative neuro disease. He told me to possibly go to immunologist to check for autoimmune disease, but he strongly hinted that I should see a phsyciatrist to deal with my stress. I mentioned that I didn't feel all that stressed until after my symptoms began and fears (of ALS) festered, but that didn't seem to matter. I believe that the doctors at the major centers and universities see so many severe and real cases, that they can get a little callous to those of us that they see as having "benign" conditions. I personally feel my muscles are twitching, cramping, and having random numbness for a reason (even if it's a harmless reason), not just because. Just like in an engine, everything that goes wrong happens due to something breaking down, shorting out or being faulty to begin with. Unlike cars, our bodies have the capabilities to repair certain malfunctions (while needing help w/others), so when "benign" symptoms might just go away, I feel it was the body that fixed the error and made it go away. I think the more scientists learn about these complex "vehicles" of ours, the less we will be told about supposed "benign" syndromes. It must be difficult for a doctor to just say,"I don't know why your muscles are twitching 24/7, we havn't figured that out yet."
As for me, I am planning on a sleep study, making sure all blood work has been completed, trying to reduce stress and who knows what else if the cramping gets worse. Good luck to us all, I've noticed many of us are about the same age (late thirties/early forties), wonder if natural hormone changes are suspect(?)
And please, anyone who wishes to email me directly and share symptoms or more importantly, DIAGNOSIS, please do so!!!
Love and wellness to all,
Flo
***@****

[2muchtwitching]

Many people twitch and it is usually benign.  I invite you to join other twitchers at the MGH neurology web forums (just put MGH forums into your browser) and go the topic NEUROMUSCULAR.  You will have to register a posting name and password first.  You will find many people with the same problems, fears and much friendship and good advice. You may also want to check out http://www.nextination.com/aboutbfs/

[David_M_M]

You might have Restless Leg Syndrome (RLS) with Benign Fasciculation Syndrome. I have had generalized coarse muscle twitching with parasthesias, cramping and easy fatiguability for the past 1.5 years following a bout with the flu. About 8 months ago, I began to get creepy-crawly sensations in my arms and legs, along with myoclonus about a half an hour after laying down to sleep. It was awful. I had to get out of bed and do push ups, deep knee bends and stretching to alleviate the symptoms. My brother, who is an MD (who also has RLS), diagnosed me pretty quickly (from personal experience, I guess). I went to my GP and he has me on 600 mg Neurontin about 1 hour before bedtime, which helps with the myoclonus and creepy-crawlies. I also found that when I am able to get some exercise in the early evening that I don't have to take the Neurontin. There is a website for RLS (not to be confused with ALS! I know, I've been there with the ALS panic): http://www.rls.org

Happy twitching!
Dave

[Susanny]

I was diagnosed in June 2002 with BFS, after two harrowing months of thinking I might have ALS--so I heart goes out to everyone out there in that position. I am almost %100 better now, and I wanted to share some things that I think helped me.   I did have full blown symptoms, incl all over twitching, thought I was short circuiting all over my body, could hardly walk down stairs, couldn't sleep or eat, had throat tightening sensations, finger  and hand twitching with pain in my hands. So I really was in bad shape. I was not under alot of stress when my symptoms started, but months before had moderate stress.
Even though stress wan't the original cause,  to get better,  the FIRST thing you need to do is eliminate any stress you can control, and you can probably control alot more than you think.  Simply refuse to get upset at life's many little tribulations. Benign really does mean harmless, altho your symptoms are real, they will not progress to ALS.I do think this is an organic (not mental) condition--probably viral in origin.  The problem is that it is dramatically worsened by stress, as with many other medical conditions. I took very limited, small amounts of Ativan just to get me through some days, but prob. 20 pills altogether.  I don't want to rely on drugs.
Second, get good sleep. Take a Tylenol PM if you can or something similar. Lack of sleep sets you up for poor reaction to stress, and your body can't heal and fight viral infections if you are tired.
Third, take a multi vit and eat well, lots of Vitamin C.
Fourth, get some aerobic exercise, so you work up a sweat and get your heart rate up for 20 min.  Get guidance here.  I think this helped me the MOST. My symptoms aren't worse after I ex. (like ex bike, spinning class), but I established good sleep, good eating, etc before trying to ex rigorously.
I hope this helps someone out there..take care!

[itwitch]

I've also been experiencing quite a few fasciculations over the past year or so All over my body.. It started with my feet.. (I thought I was sitting on my wallet) and then stopped. Then it started up again last year in my lower eyelid. It's been progressively worse for the past year but something sort of amazing happened about 3-5 months ago. Fasciculations at that time were in the 250-300 per hour range with anxiety and some weakness increasing into the core of my trunk area, and they were severly beginning to affect my work and life. Particularly in my eyes and feet. Saw the nuerologist, got the MRI, EMG, etc.... About 6 months into this the Doctor took a little vacation and the other doctor in the office saw me. Asked him about a growth on my hands and elbow he said Viral wart... HPV.. He said we should remove that.. Got any others I said yes on my knee. He removed that one too .. Guess what?? In two hours fascics almost completely gone. In about a day completely gone for hours on hours at a time!!!..... Worst case was during a day I'd say they were up to 5-10 an hour... That was about 4 months ago. My doc says it was a coincidence, kind of like acupuncture. OK then lets go with acupuncture!!! Anyway warts or HPV are difficult to get completely rid of and the fascics were still just barely there. but......... I've almost eliminated my fasciculations and they are only occuring at what appears to be the percentage that I have these left on my body. Somehow I may have become sensitized to something on the skin after a couple of bouts with sinus infections and the medications I was using to get rid of my infections. The docs may tell you this is impossible and that these warts only grow on dead skin; but I say since they are a virus they shouldn't be dismissed as a possible cause.

All I'm saying to everyone twitching is to be sure to look on the surface too! What has helped me may help one of you. I've made a few mistakes over the past 6 months in treating these and have been a little over zealous in after treatment i onw of the last areas I found them... (Don't use salicylic acid. It just spreads them around.) Which is where I'm at now still finishing up treating these on my feet and a couple or so on my head and hoping this is the final answer to my fascic problem.

My fasciculations are a jsut a little heightened (maybe 20-40 /hour and I have a little twinge on my tongue for the first time that I'm attributing to my visit to the doctor today-because they (fascics) will flare up for a day or so after a treatment on the warts). But, Like many of you I've worried about ALS MS etc. but for now I'll try this route as it is working pretty well and I'm hoping that I'm at the e.... I'm not a doctor but maybe someone is in the same boat as mend of this thing (head to toe eradication) within a month or so more will be completed.

Take Care... I'll update this in a couple of months as you have to go back for treatments every couple of weeks to make sure what they treated is gone...Hopefully this is the end of this.... God Bless.....

[t_anunson]

Hi all! I`m a twitcher too. I am 3 months post partum from the birth of my daughter. At 2 weeks post partum, I started having some odd symptoms. Slight tingling and burning in hands and feet, tendons in ankles tensed up when I bent down, my right arm cramp and tingled with an electric shock sensation upon over exertion, I got a numbing sensation on the ball of my left heel, and I started having twitching all over. Some of my symptoms have went away....including right arm symptoms, and my tendons are slightly better when I bend down. But now the twitching has moved to my knee. I seen a neurologist recently who did some tests, but didn`t seem to find anything serious. That was before my knee began to twitch though. It seems a little better today, so I think that this may be benign. But I just wanted to tell everyone else, hang in there. My symptoms have gotten some better and I think yours will too. I`ve been stressed out with the new baby and we`re also remodeling our house. I`ve noticed stress seems to make it worse. Eliminating stress seems to help. If anyone would like to email me w/ symptoms, my email is: t_anunson***@**** Good luck all!

[jvd01]

Hi I am new to this, Iam a 29 year old male, I was diagnosed and treated for Lyme Disease back in late June. Since then I have not had one day pass where I have felt normal. Seems to be different things all the time that come and go. Some of the things I am experiencing are a strange tingling in my head seems to be right under the skin and changes location, the same type of feeling in my chest, muscle cramping in my arms but no loss of strength or feeling, lately I have been getting that same feeling in different locations in my body such as the top of my foot, my knee etc sometimes it feels like there is a bee buzzing underthe skin... The latest develpment is muscle twitching which is happening all over my body from my face to my toes but not all at once, and that comes and goes. I did see a neurologist about 2 months ago and had a Spinal tap and brain MRI performed both were negative. During this time I have also developed high blood pressure and I am now on medication for that lisinopril 5mg per day. My question is both my PCP and Neuroligist do not seem to think anything serious is wrong, that is comforting but going through these things every day has become very stressful for me. Does anyone  have any recomendations or information that could lead me in the right direction, anything would be very helpful, I do see the Neuroligst again on 12/18/02