Thank you so much, Annie. I hope my site seems a worthy direction to keep headed in. I was just penning a new post about what happens during IVIG treatments, which is my current 3 week regimen plus Mestinon. I have not been given steroids due to blood sugar and depression issues. CellCept made me have stomach bleeds and fueled great anxiety. Doctors appointment is about 2 weeks away, so we'll see what happens, if anything. I try to stay thankful that I am not bed-ridden. The problem has been multiplied by continuous pelvic floor spasms which seem to get better the stronger I am. Between neurology and urology coming up, hopefully at least the pain can be alleviated.
Have you by any chance heard anything about high dose Vitamin D treatments?
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Originally Posted by AnnieB3
Hi, Susan. Welcome! I read your story. Sad to say that many people go through a similar process with MG. I'm sorry you went through all of that!
I know there are some Facebook forums, but I'm not on FB. Can someone here direct Susan to those groups? There are ones I've looked at that are not current, don't have good info, and are not support sites.
Once someone has a crisis, it takes longer to recover, especially without the right meds. Does IVIG work for you? Are you still on Mestinon? Any other drugs? You might need an immunosuppressant.
For those of us who can't live a "normal" life, being isolated really sucks! I'm glad you are using creativity to keep yourself engaged! That works for me too. But finding others with MG to speak to helps a lot.
Do you take naps? That can help with strength as well. Staying cool while you do anything, such as having a desktop fan blowing, is good too. You obviously know, after reading your story, what hot weather does to us!
Have you been tested for a B12 deficiency? Many people have that and a vitamin D deficiency. Doctors should know that many of us have more than one thing wrong! 
I'm glad you've found a balance in your life. But you may need more care. I hope your neuro and you will discuss if the treatments you're on are good enough. Take care!
Annie |