CCF-Neuro-M.D.-JT Doesn't sound like ALS to me either. A peripheral neuropathy (which is usually symmetric, affecting both sides of the body) can cause muscle twitching in the areas that are affected. There is also a possibility that this represents benign fasciculation syndrome. Quinine can be helpful for muscle cramps and twitching, although this needs ot be cleared by your doctor as some people with pre-existing heart disease can run into cardiac rhythm trouble. Soda water contains small amounts of quinine that's relatively safe and has been helpful for some patients. Magnesium and Calcium supplements can also help to some extent. A repeat EMG is something to consider to further evaluate the possibility of a peripheral neuropathy. Blood work should also be considered to look at potential causes. I can understand your concern about this being something serious, but in my opinion it's better to know what it is so you can get the right treatment as needed. Good luck.

mineandours Christina, I'm having almost the same kind of problem. Perhaps we could e-mail each other. Sure would like to talk with someone who has the same "worry" as I do. I feel so alone. My neuro told me that I have benign fasciculations but no one can imagine what it's like. (And I can't still help but wonder where it's going to lead or if will end up being something else.) Actually, I would appreciate hearing from ANYONE who has this affliction. Maybe we could start a support group. My e-mail is: ***@**** My name is Carol.

ravox The benign cramp catch-all is a strange and mysterious basket to be tossed into. Most general practitioners in Canada haven't ever heard of it, and the specialists are busy and vauge enough to be of little use in the area of emotional support. I was given this diagnosis, as a probable, 2 years ago. I was worried about ALS, some doc at a walk-in clinic gave me gen-alprazolam to calm my nerves and it magically reduced the twitching. Several months ago my symptons backed off enough so I could take my life back, the pain, numbness, and cramping really faded. Still have tiny twitches all the time, but I did get my life back, and I don't feel afraid anymore. Ride it out Carol, relax as much as you can. My feeling is that they can spot ALS easily enough, and that there are a number of things that are not as sinister that simply have to be toughed out. I know it is hard. The stress and fear work against you. You'll get through it.

Christina123 Hi Carol,



Have you visited the Neuromuscular forum at www.braintalk.org? Most people on that forum have our exact problems. I'm so sorry you are frustrated too. What are your symptoms and what do you think caused them to begin? I think mine are stress related and also related to a very bad flu I had during the 7th month of my pregnancy in 2001. Christina





MarcusFarcus This is Me:

Extraordinarily fit

Christina123 Marcus -



I am sorry to hear of your problems. I know how you feel. I really do! Have you tried reducing strees, vitamins and yoga? Also, are you the Marc Anthony that posts on braintalk?



Christina

scaredy cat I also have been affected by twitching, burning numbness and pins and needles. I am 31 and shudder at the thought of living with this my whole like or even worse - it getting worse. I'm a mystery to all the doctors and have now considered eastern medicine as a help..such as acupuncture. Has anyone tried this route? Did it work?



Also - for all of you who are in the throws of this experience - make sure you ask your doctors to test you for b-12 deficiency. I have been checked and found that I have no b-12 in my system which can lead to nerve disfuction. Have been getting b-12 injections for 2 years - it helped the twitching a bit but it still comes back now and again, plus new symptoms of pins and needles have appeared since. Also - I am considering that I might have been exposed to too many solvents over the years - as I am a painter and I have been around nast solvents for years. I'm sure it has something to do with.



For the gentleman who feels powerless - the only thing I can recommend is to try and take charge of your life. First - go see a therapist. You need a support system to deal with this. Second, take charge of your health...try cutting out bad eating such as your caffine intake. Caffine is very nasty for twitches. Adjust everything harmful that you do to yourself and see if it changes your symtoms. Take charge of your problem and figure out if anything YOU are doing that is making your symptoms worse or better.



Since this has started for me about 3 years ago I have changed my eating and my life and found if does help. Being ill is the great clarifier. If there are behavors in your life that are toxic or people that are toxic - get rid of them. You are ill and you have to put yourself first - and this includes taking care of yourself. I swear taking charge of your own health can help. At the very least it gives the illusion of progress which is comforting.



I am also interested in corresponding with people with the same symptoms. I can be reached at kitty_craft***@****



Best.

Pamela

scaredy cat I also have been affected by twitching, burning numbness and pins and needles. I am 31 and shudder at the thought of living with this my whole like or even worse - it getting worse. I'm a mystery to all the doctors and have now considered eastern medicine as a help..such as acupuncture. Has anyone tried this route? Did it work?



Also - for all of you who are in the throws of this experience - make sure you ask your doctors to test you for b-12 deficiency. I have been checked and found that I have no b-12 in my system which can lead to nerve disfuction. Have been getting b-12 injections for 2 years - it helped the twitching a bit but it still comes back now and again, plus new symptoms of pins and needles have appeared since. Also - I am considering that I might have been exposed to too many solvents over the years - as I am a painter and I have been around nasty solvents for years. I'm sure it has something to do with.



For the gentleman who feels powerless - the only thing I can recommend is to try and take charge of your life. First - go see a therapist. You need a support system to deal with this. Second, take charge of your health...try cutting out bad eating such as your caffine intake. Caffine is very nasty for twitches. Adjust everything harmful that you do to yourself and see if it changes your symtoms. Take charge of your problem and figure out if anything YOU are doing that is making your symptoms worse or better.



Since this has started for me about 3 years ago I have changed my eating and my life and found if does help. Being ill is the great clarifier. If there are behavors in your life that are toxic or people that are toxic - get rid of them. You are ill and you have to put yourself first - and this includes taking care of yourself. I swear taking charge of your own health can help. At the very least it gives the illusion of progress which is comforting.



I am also interested in corresponding with people with the same symptoms. I can be reached at kitty_craft***@****



Best.

Pamela

armistead About eight years ago I developed twitching in my legs. I was told they were benign fasiculations. Then two months ago my whole body fell apart. I spent three days in cardiac ward, had

a cath done, everything was fine. I stayed dizzy for a month, then started getting burning pain in my flanks and groin. Then the twitching took over my whole body. The pain got so bad in my groin that I couldn't walk, then it spread to my testicles and penis, buttocks, and back of thighs. The neurologist has ran several test, all normal results. The urologist has done the same. All blood work is norma. HIV negative. I just spent three days in the hospital because of the pain and had a complete MRi of my spine, results normal. EMG and NCV also normal. having muscle biopsy done next week. My life is a nightmare now. On so many meds that I can hardly function. Why can't I get an answer?



sindiveri Just wanted to mention i'm new to this board but i've had trouble with the twitching all over my body also. My events we're weird though. I started off with pain in my knee that eventually ended up in my right quadricep being paralized with marked atrophy. Eventually my use did return. Ive done it all like you have, EMG (was messed up when the leg was paralized), spinal tap, and Tons of MRI's. All we're normal which gives relief. But the day after my lumbar puncture i started to twitch. Her it is 6 months later and though my leg still works, it gets pain like athritis in the knee and itchy. But what annoys me is my twitchin in my ankles, back, triceps, feet. Hell there everywhere. IT's hard for people to understand cause sometimes i feel like one of my twitches is gonna keep going into a seizure or something. SOmetimes it's just a quick jerk, other times it's like 5 to 7 seconds. Never more than that though. Occurs alot more when im sitting still or going to sleep too. I wonder like the rest of you if it's something bigger that's coming after all i went thru and that i'm only 26. ALl i can do is live my life to the fullest. But everytime i get sick now (for istance right now i have strep throat) I freak out, thinking it will develop into something bigger, or i'll go paralized or something. WEll if anyone who twitches wants to chat, drop me a line.... I take no meds for anyof thise and see a neuro every 6 months.



***@****, ***@****.

uk_paul Hi, My name is Paul, a 37 year old father of two living in Surrey, England.



Since about August last year I have been experiencing a twitch in my left eyelid. A couple of weeks before Christmas, looking on the internet I worried myself finding that it may be a symptom of MND (ALS) or MS. I immediately booked a doctors appointment, and was told it may be due to stress and too much caffeine.



I spent most of the Christmas period very worried that it was more serious than this. I also have started experiencing twitching in my other eye (although strangely my first eye has almost stopped completely), constant twitching in my right leg (especially calves), random twitches in various places (thigh, arm, lips, hip) and a sort of tingling under my eyes.



The twitching in my leg is difficult to describe. It is more a tingling as though a constant small electrical current is passing though my calves.



Anyway, today I came across a couple of forums, including this one, which have given me some reassurance. I don't think I have any other symptoms such as muscle weakness, and am still able to go running, etc. So I am hopeful that what I have is BFS.



regards and hopefully a Happy New Year to us all.



Paul Speller

(***@****)