possible onset of MS or lymes disease,,maby fibro?,,have these things been ruled out?,,,need a ct scan on the brain exct.
Hi there! It sounds like you and I have alot in common as far as no diagnosis, years of problems and doctors that don't seem to care. I feel where you are coming from for sure and I like you so many times just want to give up and do have thoughts of suicide as well. But, I am a Christian and that always takes over my thought process as well. But I am also a wimp in alot of ways. I thought everything I had been through would make me stronger but sometimes I think it is quite the opposite. Anyway, enough of my rambling. Have you ever had any trauma, especially to the head? As far as docs go I think a neurologist is usually the ones that handle these types of symptoms as I have some of the same ones myself. I have the twitching all over like you talk about and have had severe tingling, itching and burning in my head every day for the last several years. I am surprised I haven't suffered a stroke already or died or something, You mentioned you had a muscle biopsy. Usually they wont do that unless they have a pretty good indication of what someone has. How is that you got your doc to do the muscle biopsy? Did it hurt? Sounds painful. I have asked my docs if they would do a biopsy on my legs and they have refused so far. I can't get anyone to help me either so I know how you feel. I have gone to just about any kind of doc you can think of and even to the Mayo Clinic....what a joke that was.....and no I am not laughing!!!!!!!!!!!!!!!!!!! Have you had any MRI's or nerve conduction testing or anything??
I agree. A good internist as your primary doctor can help balance it all out, find the right docs for your symptoms, and manage the day to day for you. And it does take some time to find the one that "clicks" with you. But, it is so worth the search!
Best of luck!
Hi. I'm so sorry that you are having such problems. I hope I can be at least a little helpful. I see that you are up late...possibly worrying, and I know what that is like, so I will try to reply quickly. This is what I know. A neurologist is often not the correct doctor for myopathies typically, but he should be able to refer you to someone. If he is unwilling, then perhaps you could post on the physician side of this forum and ask a specific doctor. Or you could seek a second opinion. A good internist should know where to send you next.
This is what I know personally, which is seriously lacking...sorry, but here it goes: There are many types of mypopathies and different specialists handle different types. Some are inflammatory and I believe those would be handled by a rheumatologist. This is a doctor that treats all sorts of conditions where the body attacks itself. There are also endocrine (gland) related mypoathies which would be handled by an endocrinologist. Then there is muscular dystrophies. These would be handled by a musculoskeletal specialist, I believe.
I think that covers it. I'm not sure which one is best for you. My hunch is either the musculoskeletal or the rheumatologist...but I'm no MD. Hope this is helpful.
Please keep your chin up and don't give up. Be persistent and you will find the answer. And I suggest you find yourself a really good internist who can help bear the burden of this condition - someone who will take time to listen to your entire history and take over the task of finding the right specialist, so you can focus on getting better, not managing your care. Wonderful doctors are out there, but you sometimes have to go through a few duds to find them....sorry dud's. Hope I didn't offend.