New to this forum
 

Hi all. I'm glad I thought to research Myasthenia Gravis patient-to-patient forums because my efforts brought NeuroTalk to my attention.

I have been treating Hashimoto's Thyroiditis for three years now, and, as the literature says, if you have one autoimmune disease you are prone to get others. That is how it's been for me. First, Hashimoto's, and now, MG.

Just this past Fall, I was diagnosed with Myasthenia Gravis. Symptoms at the time were double vision, slurring of words, and difficulty swallowing. I saw various practitioners who suspected MG but not until seeing a neuromuscular guy and having a positive single fiber EMG test, was it confirmed.

I've been doing copious reading on the autoimmune disease, found a wonderfully informative book The Thymus, Manganese and Myasthenia Gravis by a Dr. Josephson, and have been taking E-Manganese per my naturopathic doctor's recommendation. I should say I'm in remission now, not because of the supplements or special diet I'm on, because the remission began before any of that. That alone puzzles me.

I feel pretty much alone in facing this. My family doesn't get that this is a serious matter, requiring that I rest, eat special foods and take lots of supplements, minerals and herbs. They think, like so many of us do, that a pill or injection or surgery, should clear the whole business up. Not so.

I've learned a lot over the past couple of months but need support from others who are experiencing the same symptoms, concerns and fear for the future. BTW, I'm an 81 y/o female.

I look forward to learning from others' experiences. Thanks all. :grouphug:

Great to meet you!!
 

Welcome finuch. :Wave-Hello:

Hi finuch
Welcome. I understand your feeling alone while facing multiple autoimmune conditions. I don't share your exact diagnosis but I have primary Addison's Disease (adrenal failure) which also makes me prone to other autoimmune conditions. I'm waiting for a neurology appt. to continue diagnosis for possibly Sjogren's, Periperal Neuropathy or B12 deficiency. (or possibly all 3). I am also on my own and have had many family & friends who don't understand. I was unwell for a number of years with a history of misdiagnosis and mistreatment before they finally got it right. I have not been able to work at all for 5 years and was only part-time for 8 years before that. When I finally got the AD diagnosis it was like they all thought I was cured and should go back to work
I recently had friends, who I've known for more than 30 years, say to me "Just force yourself to do it" when I mentioned how frustrating it was that I wasn't able to do my own house repairs anymore. Consequently I no longer talk to them about what I'm dealing with. In some ways I can sympathize with their lack of understanding - when you are healthy it's hard to comprehend what someone may be going through day to day until you've had to live it yourself. Many years ago (in a former life) when I was well, I had partner who had chronic pain and kidney malfunction due to an accident. I thought I was being considerate of his health needs and energy levels but it wasn't until I became ill myself that I really understood how tough it had been for him. So I've learned not to let their attitude annoy me or to expect anything from them. I've also learned to take the good days and run with them (ie get things done) and to just get through the bad days.
I hope you find some answers on Neurotalk - keep reading and posting - I'll keep an eye out for how you're getting on. All the best

bluesfan - thanks so much for the words of encouragement, and most especially to make the effort to understand, and accept, those who lack understanding. I know, in theory, that we can't know another's journey until we walk in their shoes - so to speak - but it's so easy to forget especially when I'm on the receiving end of those who want me to be 'fixed'. I've learned to be grateful for the good days, i.e., that my vision, speaking and swallowing are better than they were in the beginning - in other words, I try to be grateful that I'm experiencing remission of sorts.

Thanks again, all, for responding.