help please in need of diagnose
 

I have all the symptoms of mysthenia gravis but no medical diagnosis drooping eyes lately can barely get out of bed than all of a sudden I feel fine lately I don't feel very alert and need a diagnosis my vittamin d levels are low but besides that everything ok I don't know what to do anymore I have issues sleeping cause of teeing like I'm falling being lightheadedness I'm getting bounced from doc to doc and can barely make it to the appointments I'm so weak I need a good neuro who will listen to all my symptoms just not bloodwork alone also profusely sweating. Anyone know an amazing doc in nj Philly area I feel as though my body is trying to shut down also episodes of uncontroabble crying thanks

Sorry you are going through this.. Have you been seen at an MDA clinic (you can look it up online to see one near your area - sorry I don't know of dr's up there)..
Have they checked all your endocrine labs - cortisol, hba1c, LEMS tests (for lambert eaton- not endocrine), How's your blood pressure and blood sugars? Thyroid etc?

I've been there - barely able to make it from day to day..much less hours, work and life.. how's your breathing? So sorry.. keep us updated!

I live in Bucks County. I saw Dr Sergott at Wills Eye Hospital in Philadelphia for the eye symptoms. He suspected MG although my antibodies were negative. He put me on Mestinon and referred me to Jefferson University hospital for an SFEMG for a definitive diagnosis. Dr Racocevic did the SFEMG and it was abnormal and I was diagnosed with MG. I saw Dr Racocevic for a while, he is a neuromuscular specialist. We did pregnisone and IVIG. I wanted more aggressive treatment and the ability to see the doctor more regularly when I had bad exaccerbations. I now see a local neuro. She is not an MG specialist. But she is very good, accessible and I am getting more aggressive treatment. She even sees me on Saturday morning when I am bad.

I do suggest going to see the neuromuscular specialist at a big teaching hospital first to get a definitive diagnosis. The specialist at Jeff only expect to see you every 3 month. They do not seem to want to manage the daily/weekly ups and down. So you need a local neuro to do that.


Let me know if I can be of more help

kathie

Watch the Vitamin D
 

It sure sounds like you have got it. Watch the Vitamin-D. It is a hormone that affects autoimmune responses, but it does not act like corticosteroids. The medical practitioners seem to be largely unaware of its involvement. They had better get on the ball and face the complexities of molecular medicine. I suggest a good article below. It affects my MG. It can bounce you around. To little, and you get tired. Too much, and the MG symptoms become reactive. Use a modest supplement routine and don't change the dosage.

For Vitamin D involvement see:

Cynthia Aranow. 2011. Vitamin D and the Immune System. J Investig Med. 2011;59: 881-886.

Abstract:
It is now clear that vitamin D has important roles in addition to its classic effects on calcium and bone homeostasis. As the vitamin D receptor is expressed on immune cells (B cells, T cells, and antigen-presenting cells), and these immunologic cells are all capable of synthesizing the active vitamin D metabolite, vitamin D has the capability of acting in an autocrine manner in a local immunologic milieu. Vitamin D can modulate the innate and adaptive immune responses. Deficiency in vitamin D is associated with increased autoimmunity and an increased susceptibility to infection. As immune cells in autoimmune diseases are responsive to the ameliorative effects of vitamin D, the beneficial effects of supplementing vitamin D deficient individuals with autoimmune disease may extend beyond the effects on bone and calcium homeostasis.Key Words: vitamin D, autoimmunity, innate immunity,adaptive immunity.