Quote:
Originally Posted by AnnieB3
I'm sorry you've been through so much! I hope you're finding a way to cope with all of that trauma!
Here's the article you posted (the last part of it wasn't highlighted).
http://www.ncbi.nlm.nih.gov/pubmed/?term=11474561
That article describes Rach, who hasn't been here for a while. She has POTS, autonomic dysfunction/failure, and suspected MG.
I have to wonder if mutations occur with successive generations of those who have MG, that might cause autonomic failure.
Are you, and Bluesfan, of Northern European ancestry?
BTW, Bluesfan, I hope you do have a B12 deficiency, because it's so easily treated! 
Rockenmama, Are you at Mayo or have you been? If not, and you are better and can travel, that would be a good thing to do. OR Johns Hopkins. The Cleveland Clinic is also a pretty good place for autonomic issues.
Actually, MG and mito are not uncommon, just not being investigated that much. There are articles on PubMed about that. There might even be a component of mito due to a biochemical pathway "kink." I wish they were further along with research in this area!
There are so many odd little diseases!
http://emedicine.medscape.com/article/1162238-overview
http://emedicine.medscape.com/article/1215103-clinical
I'm a bit busy right now or I'd give you more. Maybe later.
I really hope your docs put their thinking caps on. Sometimes, however, the answers are very simple.
Annie |
My Neuro is trying to get me into John Hopkins. I did find something that I really really can't believe I MAY be the one that or should I say my husband will be responsible in diagnosing Orthostatic_hypertension They've tested me for the opposite ( laying, sitting and standing and all three my blood pressure was not only high but got much higher each time) but the nurse who did it exclaimed well she's not Orthostatic hypotensive. It would explain why my head feels ready to explode when I sit for more than 5 minutes. Why my blood pressure is extremely high when they ask me to stand to take blood pressure ( my blood pressure is always high under any stress as of late but it's always higher if standing) And why I feel so misserable after sitting in wheelchair after waiting in waiting room at Physical Therapy and then can't get through therapy very well. I'm calling my Neuro first thing Monday morning. I don't thing they will be able to get my MG under control if they can't get everything going on with my autonomic system under control. The way I see it they will probably have to hospitalize me and give me IVIG and start with high doses of prednisone and finally get me started on an immunosuppressent of some sort. They can't just politely ask MG to go away apparently.
Thanks for the links! I'm going to check them out in a bit!!! YOU ARE SO RIGHT about so much!!! The human body is amazing and as many doctors who think they are gods, have NO RIGHT in thinking that! Mito stuff is in it's infancy. I should be getting my appointment in the next few days for my muscle biopsy just to make sure. I really hope it's all just MG because as bad as MG can be Mito is much scarier.
And I second the hope it's a B12 deficiency bluesfan! Still sucks but at least it's treatable!
Hugs!