rockenmamaof5

If so just wondering what the root cause of the myopathy is. I was diagnosed with Myasthenia Gravis in early Jan. But after 3 ivig's and all the meds that I'm taking, my neurologist is questioning the diagnosis since I haven't responded like she would have expected me too (she's a good doc and at a top hospital) Also I now have been diagnosed with Dysautonomia so now they are starting to think Mitochondria Disease as a possibility. I have some top notch doctors who realize that I'm a difficult case, too much for them so they will be sending me to John Hopkins once I've had my muscle biopsy in a week or so and my Single nerve fiber emg. I know that eventually everything will get sorted out and I'll get whatever diagnosis/s. But until then I'd like to find other individuals that are dealing with similar issue's. I've been out of my wheelchair for about 2 weeks and am trying my best to keep out of it, but it's hard trying to figure out the balance on my own. I don't know anyone or have anyone really to talk too that knows what I'm going through. Thanks in advance! Pam

I've been on it since Feb of this year for Myasthenia Gravis. I had a tilt table test on Friday which I failed. I didn't pass out ,which I didn't expect since I never do, I just feel so horrible. I was diagnosed with orthostatic hypotension. My neurologist upped my dosage of Mestinon and within a couple weeks I started feeling MUCH better (didn't feel like my body was ready to explode and shut down). I had read a little and saw that one of the side effects of Mestinon for people who have problems with orthostatic hypotension is that it helps raise the blood pressure. I'm wondering if that's what's kept me from passing out. Anyway just thought I'd ask to see if my thoughts are valid Thanks, ​Pam

Thank you for the warm welcome! I hate the need for a place like this but am very thankful that this place exists! I'm still having a very hard time comprehending all that is going on and despite having a GREAT PCP and Neurologist, they aren't experienced enough with what's going on with me so having a place with people who do, I feel will make things "easier". Pam