Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
9 rounds of non MG friendly antibiotics in a row for recurring staph aureus infections (the last round provoked breathlessness after speaking 3 words)
previously worked with neurotoxic darkroom chemicals for 5 years (on a commercial basis in non-ventilated darkrooms)
previously positive Epstein Barr virus
later some accidental exposure to large quantity of monsanto round up
5 years total of progressive, fluctuating & spreading weakness general moving to bulbar and ocular last
2 blood tests & SFEMG not remarkable
Mestinon was working for ocular, breathing & deltoid muscles but not bulbar
I am in complete remission now (not because of the Mestinon of course!) it took 2 years for strength to gradually return so I could use my hands again. Last muscle to remiss oddly enough seems to be the stapedius muscles
Why only dogs and horses....
Do wild dogs get it or only domesticated...
What fascinating research that would make. Less variables perhaps.
We should start a registry for them as well!
I wonder if this eliminates - a toxic trigger?
(... moi - je n'ai aucune idee ...)
I was so stressed and depressed that I prayed to GOD to make me so bad that people would feel my pain through my suffering. and VOILA ! the next thing i knew i was diagnosed with MG within a month......I din know GOD would answer my prayers so soon. :-(
Michele
Dr had told me when dx with sjogrens that I could develope other autoimmune, MS, cancer... so I think once you immune system is compromised this could be the trigger.
Only toxic chemicals I am exposed to is nicotine as I am still battling that addiction and I am convinced in my mind that this is the real cause of my MG as it is the nicotonic Acetylcholine neurotransmitter same targeted NT that quit smoking aids target.
IVIG got better for me second time around. No side effects at all, and while still weak at the time I released it was because I had spent months not using my muscles. It's now slowly coming back and I am coping fairly work in my second week back to work.
My crappy diet (now VERY healthy) and poor condition (now exercising regularly) are suspect, although there does seem to be a genetic predisposition.
Good luck
This is a great question, I really appreciate reading everyone's responses, it helps so much to know that others are out there questioning the reasons behind our MG.
I have other autoimmune stuff in my family, RA, thyroid. Looking back I had symptoms after birth of my children, and then had full blown horrible symptoms after extremely stressful illness of a family member (he had autoimmune response to flu shot, was paralyzed with guillian barre after flu shot and in ICU, if you google this illness it is simply horrific). I was up around the clock in ICU and then home to care for my toddlers, never slept at all.
I will tell you that I probably had MG for a long time, but the stress and a certain medication left me with extreme symptoms. The medication was the steroid preparation in allergy spray. As you know steroids can cause us to initially worsen, and then for some they can really help with the right dose. With this nasal spray I would induce the worsening of the MG in myself without realizing what was happening. I used this spray for over 20 years intranasally, it is not just topical, it enters our body (obviously, but some docs will say, hey it is only topical! no big deal!). A nurse told me that I may have unmasked my MG by the decades of use of this product, and perhaps it would have stayed more under wraps, or undetected or symptom free if I had never used it. :( I was also misdiagnosed as Lyme and took tons of antibiotics which kicked off the most severe exacerbation I ever had.
So here we have a familial predisposition to autoimmune disorders, perhaps unmasked by stress and then further induced by the chemicals I introduced into my body. It seems that many of us have a similar story to this, it is so hard to know. Good luck to all and thank you for all of your awesome posts. I read here regularly and it always gives me strength to face another day.