Please join us other twitchers over at the MGH hospitals Neurologiy forums under the Neuromuscular topic. Many twitchers there that can provide information and support.
Dear Twitchers;
I have had twitches, major body myconic jerks (before going to sleep),pins and needles (everywhere throughout the body can be painful or not) and slight tremors. I have over $30,000.00 of tests and a well-respected doctor told me to relax because I have beneign fascicuation syndrome. Now, I try to cope and life has become much easier.
Geez, Mel, get yourself to a Lyme Literate Doctor (a LLMD). Your symptoms sure sound like Lyme Disease.
I too have some twiching when i am relaxed, usually just one limb though,, about the time this started i developed a stiff neck, light sensativity, a chronic headache and i can only sleep for aproximately 5 hr. at a time. The headaches seem worse after sleep and i find myself putting off sleep although i am tired all the time. Before this, i had chronic sinus and ear infections among other problems.
I would be interested to know if any of you share these symptoms as well.
And if anyone has heard of meningitis without fever, after all if your immune system is surpressed it may not respond enough to cause fever and different people respond differently to infectious agents.
carrissa, don't let the hypochondriac accusors get to you, there is obviously another illness on the horizon, wanting to prevent it from getting out of control is not an illness.
I have a bad back with Degenerative disks, one missing betweel L2-3 so I doin't know if I am a good reference. I doi, however, have the same jumping and twitching, Especially when I am very relaxed, and just about to doze off. An arm will fly up, or a leg, or just jumping and twitching. Never had a doctor willing to investigate. They said, "I worry to much" Good luck
Hi,
I am a 23 yo with a long history of complicated medical problems including gastroparesis (paralyzed stomach), long QT (heart problem...six cardiac arrests and they are talking about putting in a pacer/defib actually ICD probably) and other weird stuff. I have been having muscle spasms for a long time which worsened over the past year. They are also all over my body and make me jump sometimes and even wake me up at night. They sometimes are just one finger, a foot, leg, arm, or my whole body. They are always happening and have not stopped. Sometimes they are out of control and my whole body jerks all over several times before they stop. I do not lose consciousness and I do remember all of this. This past week I went to see a neurologist at the University of Rochester to see if I have a periodic paralysis which may cause my long QT, GP, and low potassium which is not just due to the GP, along with other problems. I had an exercise EMG which is normal in 30% of cases where people have PP, and abnormal 70% of the time. If an exercise EMG is abnormal it is definitely PP, but if it is normal it doesn't mean it's not. Since mine was normal, they couldn't say for sure if I have a PP or if all of my muscular stuff is somehow related to my long-term GP so I am still sort of in limbo. After the exercise EMG (on my right side is where they did it..right arm really) My arm was weak and when i got off the table I lost my balance and almost fell because my whole right side was weak. In addition to the muscle twitching, I also have muscle weakness, loss of balance (I fall a lot and I have to grab onto things), can't open my hands sometimes (possible myotonia??), numbness and tingling sometimes, and a long list of other things. I was not officially diagnosed with a periodic paralysis since it is hard to determine if my weakness and neuro problems are related to the GP or a PP. They have also done genetic testing to see if I have a long QT gene or if I actually have a PP gene and that is what causes my long QT, gastroparesis, etc. That will take a few months to find out though, and not all genes have been identified in either problem, so it won't definitely tell me one way or another if both come back negative. I do not have a neurologist at my medical center close to home yet (Hershey Medical center) but will probably follow up with one from now on until I know for certain that it is all GP related and not neuro. Any suggestions or ideas? I have a little trouble believing that with all of my problems and the length that all of these spasms have been going on that it is normal, but I don't know if it is just long term complications from my gastroparesis, or something else. My potassium does get low, but since Aug. 10 I have had a j-tube and my potassium is about 3.5-3.7, too low for my long QT but still in the normal range. I get a lot in my tube formula plus add another 40 meQ's. Given all of these things, should I see a neuro about all of this stuff now before I hear back about genetic testing, or should I just wait? There is not a family history of any of these problems. Is there another test that can be used to find the cause of muscle twitching, or would the EMG be it? My neuro exam was sort of normal, meaning that as far as muscles go there was obvious weakness but who knows what exactly is causing that. Reflexes are good usually. Any thoughts would be appreciated! I don't want to be labelled as a hypochondriac, but I DEFINITELY have these other problems (GP and long QT) and so it's hard to sort it all out and separate things. Thanks for the help!
Carissa
Dear Tina:
Sorry to hear about your fiance beginning to twitch. Twitching or muscle fasciculations can occur from many things, from spinal cord compression to ALS. I will assume that his neurological exam is perfectly normal with no noted muscle weakness or sensory changes. This would likely rule out most of the worrisome etiologies from spinal cord problems to ALS. Most of the other problems would have something showing on neurological examination or basic labs or family history. So, likely most of these can be ruled out. One worries about late onset myoclonic epilepsy, but there should be some other findings such as loss of awareness during the event etc. You did not mention anything like this. I would think then that he might have what we call benign fasciculations. This a condition where muscle twitch but there is not a good reasons for why they should. The twitches in this condition get worse with fatigue and stress. Most of the time they resolve on their own. This time can be variable from weeks to years. I still would have a neurologist check him out just to make sure that there isn't something else going on.
Sincerely,
CCF Neuro MD