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For some reason I ran out of space in my last post so I'm starting a new one. Anyway, the neuro also hinted that the doctor who did the biopsy and the doctor and UCLA may not get along and this might be the reason it is hard for me to get my slides. This pushed me to keep advocating for my...

I will start with the bottom line. The EMG/NCV test showed no abnormalities of any kind so there was no new "data" to complicate my picture but rather I past another reassuring milestone given that this emg/ncv test dates more than two years after the onset of my symptoms.Now for the dramatic...

I have had a bit of a crazy day and wanted to vent. I don't know what anyone can say but I thought I'd share. I have been on the board for so long and since my twitching started life has continued with its own ups and downs. For example, I am now in the process of getting a divorce after...

Well I just got an email from my new neurologist at Kaiser. She was responding to my email. She thinks I was not reassured by her during our last visit and wants me to have another EMG. She also received my biopsy slides and is having them sent for review by a neuropathologist at UCLA. She...

Hello all!I have been having some new twitching that is in both biceps...off and on, quads and calves. It, for once, doesn't seem to be in one specific muscle in one specific side, so for that I am grateful! My question is this: they do seem to be coming from exertion. I have been building...

I just returned from a visit to a new neurologist. I had to go because I changed medical insurance and needed my Klonopin prescription renewed. I saw the ALS specialist from Kaiser. She was very familiar with my previous neurologist, Dr. Engel. She said he was the one who teaches everyone...

Do any of you tongue twitchers wonder if what you feel/experience is involving the sensory or motor nerves or both. I have never seen my tongue twitch (granted I don't look both because I do not want to and because I am usually not near a mirror when it happens). When I get the tongue...

I was watching the Today show and they had a medical segment on a rare condition called PANDAS. This is an acronym. The girl whose story was being profiled couldn't stop sneezing. It caught my interest for several reasons. First, they said it was caused by an overreaction of the immune...

I will definitely ask about this at my next appointment which I have not scheduled yet. As most of you know, an autoimmune process is the best guess for my symptoms as well.

Ive had BFS for 17 months now. I am in the UK and have private medical insurance. When I first got the symptoms, I had all the tests done privately including an EMG. Diagnosis was BFS. The consultant told me at the time he would invite me back in 12 months time for another EMG, and I have just...

My neuro prescribed 1 gram of this a day for me to be taken in three doses. He says and I confirmed via the Internet that it has been shown to increase nerve regeneration in a study involving diabetics. It also helps to improve muscle strength. There were no new developments in my symptoms...

I just got a pm asking about my doctor visits and thought I'd share it all here since some of you may find it interesting. First thing I had today was a lumbar spine MRI. I won't have the results until Thursday afternoon. Obviously anytime you have an MRI you worry that they will find...

I thought I had felt them every place there was but just a few minutes ago I felt one right in the crease behind my left ear. It was a definite twitch. Two pulses. Is there a muscle there? If there is, I cannot move it and do not think I ever could.

I have issued some posts and questions here, but want to summarize and ask about your opinon. Already 6-8 months in it. started with twitches, I think, in the left foot and then left hand. Most issue now are my hands. Left hand was twitching much, especially between thumb and fore-finger. Went...

I am one of those lucky tongue twitchers. I think there is a lot of confusion about the tongue movements people see that are mostly normal but that we laypersons have no way to distinguish and freak out.Unfortunately, mine are the type I feel (a few quick pulses in a tiny spot, a buzz, a zap, a...

I just had another visit with my neuro to go over another round of blood test results. All were negative (including ANA and monoclonal gammopathy tests that were previously positive) except for the raji cell test which showed elevated immune complexes. I had elevated immune complexes before so...

Have any of you read the study of the neuromyotonia cases in Northern India? They were treated with high dose prednisone for a short period and obtained significant relief. Others had to take Tegretol for continued symptom relief. Their symptoms were document by EMG but I know those EMGs miss...

I just got a referral approved by my insurance company for physical therapy. It was ordered after my neuro had me stand up with my feet together and he pushed me (I felt pretty hard) from the side and I took a step (I didn't fall over). He told me my balance was off because of the documented...

The only "self testing" I really do is twenty deep squats (no weights) every now and then. I did them a few minutes ago for the first time in a few weeks. Near the end I started to feel like something was touching my butt and even put my hand behind myself to see if there was something there...

How many people are equally motivated to find a treatment or cure for their condition because of physical discomfort as they are to just know that what they have is benign so they don't worry? Of course, I would like conclusive info that my condition is benign but my symptoms also cause me a...