I cannot get a diagnosis

  : Dear Doc,
  : I am so frustrated. I wrote to you at the end of last month and told you I had Graves
  : Disease and am now Hypothryoid/on synthroid for medication.
  : My arms feel like cement blocks, my fingers and hands are swollen, my wrist hurts
  : I can't lift a plate, my knees are buckling when I walk, I have a painful
  : neck, painful side/abdomen, my calves feel tight all the time, my big toe hurts
  : I have little lumps near my adams apple, size of peas that are new,
  : I never get a full nights sleep, or at least don't feel like I do. Up to the bathroom
  : or the twitching/jerking of my legs wakes me up, or pain wakes me up.
  : I am on ultram and naproxen and although that helps w/the pain it does NOT
  : treat the symptoms and nothing helps my hands, legs and so on. The weakness
  : doesn't leave either. I have 4 children to take care of and for 3 weeks have
  : been able to do very little.
  : This all started 5 years ago w/legs/knees buckling and the horrible weakness and
  : fatigue. All other pain is intermittent. So far they have found interstitial
  : cystitis, endometriosis, irritable bowel, gall bladder is gone and I have
  : acid reflux a lot. Ringing in my ears since childhood, clutziness since childhood
  : running into walls and people is becoming more frequent, I drop things,
  : I have headaches. The tremors and shakes have improved since the hyperthryoidism
  : is under control.
  : Endocronologist says these things have nothing to do w/the thyroid. The md
  : is stumped and I keep telling him to send me to someone who can help me.
  :
  : Here's the big questions: Is the neurologist the answer?? What are the pea sized lumps
  : on my throat?  
  : PS. Doc has run tests for fatigue illnesses, I have none that show w/bloodwork.
  : He has had bloodwork done to see if muscles inflammed, they are not.
  : He says he's stumped and now is blaming the whole thing on depression. I
  : do have depression, which I would call discouragement really instead, because
  : of the run around I've gotten w/doctors. Find/diagnosis and treat the problem
  : not cover up the symptoms please!!!!!!
  : HELP.
  : Jules
  Please contact me.  I also had Graves in 92.  Then I developed Myasthenia Gravis.  Some of your symptoms may be from MG, others sound like Fibromyalgia which I was told I had before being Dx'd with MG.  My medications have stopped most of my aches and pains that were from using my muscles to much that were weak.  You should have your doctor send you to a neurologist and test you for MG.  People with Graves or any thyroid problem are more prone to develop MG even though it is rare it has a higher incidence to thyroid related diseases.  I went 4 years being told it was depression and stress.  It is horrible to be told something is in your head when you know it is not.  
Dear Sharon:
Sorry to hear about all your problems.  Please forgive us as the holidays have made everything very hectic.  I need to tell you that without examining you and getting the history as I would ask it, it is very difficult to answer you.  Given that, I would agree with your endocrinologist and this is likely not thyroid.  Since you are taking synthroid and therefore your thyroid hormone levels are normal.  There is a condition that we see at the Clinic that may fit all your symptoms.  Mitochondrial diseases can elicit symptoms as you describe.  I think it might be a good idea to have a neurologist who is familiar with mitochondrial diseases go over you with a fine tooth comb (not literally, of course).  Alot of other test will likely be run, but I think that given your symptoms this might be the best path to follow.  The usual run of the mill (by no means does this mean that MG is trivial) would not present 5 years ago and persist this long without findings that would lead any neurologist to the diagnosis of MG. Depending on where you live there are neurologist who understand mitochondrial diseases.  If you are in the Cleveland area or near by, we would be happy to begin the evaluation.  You can call 1-800-CCF-CARE.  If you live in other parts of the country, there are centers in Boston, Atlanta, San Diego, Mayo Clinic etc.  Best of luck.
Sincerely,
CCF Neuro[P] MD. RPS