Left sided weakness, twitching, cramping
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Hi everyone, I’m 39 years old female from Netherlands, it’s about two years I’ve having weakness in my muscles and it’s getting worse. It started about two years ago with a very high heart bit (180 bits in a min.) I went to the hospital and my heart was in a good condition so it seems nothing was wrong with my heart, the next day I got a little weakness in my lower legs, I didn’t take it seriously, until a year ago it started to get worse, the weakness in my legs was getting more and after few weeks I had the muscle weakness in whole my body, but only the muscles. In that time I had different kinds of blood test, MRI, EMG. Everything was negative except a Syrinx on my spinal cord (c1 to c5 or something). My neurologist said it is too small and can not be the reason for all my symptoms. The weakness is getting less with well sleeping, good breakfast, movement (not heavy sport or exercises) but it gets worse by not sleeping enough, resting too often and not moving. When I’m moving I have to rest and lie down for half an hour. The weakness is not only in my muscles but also my JOINTS, when I walk I can feel the weakness of my joints by the pain I feel when I’m walking, special on my right side of my body. When it’s cold I’ve more pain in my joints special my fingers and toes, sometimes two of my fingers get completely white and numb, like there is no blood in those fingers. When I’m walking in a warm weather, I get swollen hands and feet. I’ve also breathing problems special if I don’t move or I’m lying down on the coach. The muscle weakness is in toes, legs, belly muscles, arms, hands, fingers, shoulder, neck and jaw. I feel the jaw weakness when I push my teeth on each other, talking, eating. I guess it’s also the muscles of my lungs because of the breathing problem. The weakness is one day better than the other day but it’s not going away, so one day I feel great and the other day for any reason is coming back. I’ve also TWITCHINGS in all over my body. I’ve had cramps special in my left leg and most of the time when I’m sleeping. My fingers and hands have cramp when I’m opening the door with the key or opening a can. My tongue is stiff and strange, sometimes difficult to talk but I never had problem with talking. The back of my neck has a kind of strange feeling special with stress; it’s just beginning of my neck after the head.
I’ve no sleeping problems, no swallowing problem, no visibility problems and no sensation problems.
My symptoms are very much like ALS or MG but my Neurologist doesn’t think so. He says that ALS doesn’t take this long and would have serious damage by now. And it’s not MG because I feel better by movement. Weakness on left side is more than right.
Please, I don’t know what to do anymore, I’ve been to two neurologists and no diagnose yet.
Can an expert or a neurologist read my post? What else can I do? And does someone know a good neurologist in Los Angeles area? For example UCLA. I’m going there for vacation and I want to take my tests and results for second opinion.
Thank you again.Helen