I need a diagnosis

[Kucoata]

I am a 51 yr old woman. 8 yrs ago I developed an arrythmia and swallowing disorder. Pacemaker placed in 2004 for heart block 2 degree & abnormal wenchebach. Temporal muscle biopsy showed "myopathic changes consistant with muscular dystrophy but not diagnostically specific". I have since deveolped servere pain primarily neck, hands and upper back(legs and feet when I have been active). I am taking 30mg(CR or ER) 3x day.  I also am taking Provigil for severe fatigue.  In short, I would be totally disabled without these medicines.  The doctors are mystified since these symptoms apparently do not track well with any muscular dystrophy. I few other interesting things have happened such as shingles, a small patch that reoccurrs every 2 or 3 months (started in 2004) and wierd shingle like blisters that I get on the back of the roof of my mouth ( began 3 months ago and reoccurs once a month).  Maybe this is not connected but it just came out of nowhere.  I have been married for many years and my lifestyle has beenconsistant - I have had the same family physician for 18 years. can anyone shed some new light on this? Thank you

[Kucoata]

Thank you for your suggestions.  No these are not relavant. I did experience a bug bite of some kind in the late 1980's - I became very ill, almost 6 months to recover, similar symptoms were extreme fatigue, pain that immobilized my right arm.  It was never determined what bit me, it was thought to be a spider. I wonder if I should be tested for lyme? Perhaps this is not relavant.  At the time I think I was tested for lyme but it was right after it happened. I was told that I had epstein barr, however, I had a mononucleosis, it was thought ,as a child (about 12 years old) so that cpuld have been a cause for the positive epstein barr.  As a child with the mono I also had severe  difficulty swallowing and it stayed with me until puberty.  Interestingly, I had a very singificant flu (which I am not prone to getting) about 9 years ago.  My periods stopped during the flu and never came back, up to this point I had no trouble with my periods albiet an occationally irritated left ovary.  The swallowing problem I had as a child before puberty came back with a vengance and the arrythmia with it. I was cross eyed and had corrective surgery before I was 3.  My father was blind in one eye presumably from birth although the eye tracked normally.  I have had a life long supraventricular tachycardia that only needed medication (beta blocker) after my period stopped 9 years ago.  I had the flu one other time in the 70's when the swine flu came through the USA (I think it was swine) That is the only other time I was ever really sick with a flu.  In 1990 I had a bronchitus that progressed to pluracy. I was a smoker at the time and had smoked for about 10 years a pack a day. I quit with that illness and never smoked again.  I am 5ft 3in, 119lbs and to look at me (full medicated) you would never know I am sick.  I am desperate - I cannot see myself living a long productive life on morphine.  Because the biopsy indicates a muscular dystrophy I tend to get pushed to the side with statements like "there is no treatment" - I need someone who will look at the whole picture, consider my history and cover all the bases to see if there is something else to consider.  Thank you for your kindness in offering suggestions and let me know if any of this added information helps. This note contains virtually my whole medical history.  I am willing to accept that this is a non specific dystrophy when all the considerations have been explored.  So far the myotonic, ocular phar, myathenia gravis have all tested negative.
Any new considerations are greatly appreciated. KuCoata

[DrNoopurMD]

Hi,

Thanks for writing in.
Myopathies can be congenital or inherited. Other causes of myopathies include steroid overuse, thyroid dysfunction, hypercalcemia, Cushing’s disease (overproduction of pituitary and adrenal hormones), inflammatory myopathies like due to autoimmune disease. Myopathies can also occur due to medications like cholesterol lowering agents, chloroquin, zidovudine, herbicides and insecticides.
Do you think any of these could be a likely cause in your case?