Aa
Aa
A
A
A
Close
Avatar universal

undiagnosed symptoms, please help

I have had a chronic illness since 2002. It started as what I thought was an extremely bad case of the flu. However six years later I am still sick and no one can tell me why. I have severe muscle pain, involuntary muscle spasms which are constant in my calves, I mean 24, 7. I am also starting to get involuntary twitching in my entire body.at times I have what I call flare ups when the pain is so bad that I have to go to the emergency room. I have gained a lot of weight, I am always fatigued and the back of my head feels bruised, when I push on it it is very painful. It also gives me the sensation like my scalp is shrinking, (like my skin on my head is literally too tight) and it drives me crazy. I have had two muscle biopsies which indicate some form of myopathy, and the myelin  sheaths around the the nerves in my muscles are breaking down. I feel sick and tired every day of my life. I keep telling my neurologist every time I see him I just want to feel better. But there are no answers for me.. Could you at least suggest what type of doctor I should see for an undiagnosed muscle disease? Do you have any ideas as to what could be the cause? Especially my head. I am on the verge of suicide. I just can't take much more, please help.
4 Responses
Sort by: Helpful Oldest Newest
701334 tn?1262853503
possible onset of MS or lymes disease,,maby fibro?,,have these things been ruled out?,,,need a ct scan on the brain exct.
Helpful - 0
Avatar universal
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??
Helpful - 0
623944 tn?1244035490
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!
Helpful - 0
281728 tn?1190429787
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.  
Helpful - 0
Have an Answer?

You are reading content posted in the Undiagnosed Symptoms Community

Top General Health Answerers
363281 tn?1643235611
Nelson, New Zealand
1756321 tn?1547095325
Queensland, Australia
19694731 tn?1482849837
AL
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Discharge often isn't normal, and could mean an infection or an STD.
In this unique and fascinating report from Missouri Medicine, world-renowned expert Dr. Raymond Moody examines what really happens when we almost die.
Think a loved one may be experiencing hearing loss? Here are five warning signs to watch for.
When it comes to your health, timing is everything
We’ve got a crash course on metabolism basics.
Learn what you can do to avoid ski injury and other common winter sports injury.