Gingergrrl
Senior Member
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@Gingergrrl, I'm fine with that.
Great, and will send you a PM tomorrow!
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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@Gingergrrl, I'm fine with that.
The autonomic neurologist not that much help! Par for the course..... Back to the land of the no answer! Good luck to all.
@Gingergrrl - Hello! First of all, I should update this thread if I havent' already that my tilt test was actually NEGATIVE so I don't know what to believe now. He actually said, "well sometimes you have POTS and sometimes you don't." What does THAT mean!!!!!!!!
Ugh, anyway.... Funny, he mentioned CFS/ME as his first thought as to what was wrong!
Which was on the bottom of my list because throughout this 3 yr nightmare, fatigue was never really one of my symptoms up until recently. I have since come to see on this board that a lot of members do not really have fatigue and have what I have which is the never ending barrage of neuro symptoms and autonomic symptoms. I know ME is a neuro disease but I am still caught up in "I have something else let me visit 20 neurologists" phase, which I need to let go of at some point. He did not think I had MSA either which is reassuring. I understand the nonstop research, I hear you. I have concluded that its definitely some type of mitochondrial issue, but whether its CFS/ME or some other "developing" neuro disease yearsssss from now, I feel like I will never be reassured fully until the darn symptoms go away but I just dont see that happening, although in my situation b/c of the "no fatigue" I never really tried resting...... until now. I am finally tired and see the muscle atrophy and feel the weakness -
No, I did not take any meds on the day of the test, but I kept bracing my legs, so maybe that was it.
Yeah, I forget which thread I was in too, sorry, bc of the many theories I have about my illness this is not the only disease blog I belong to and I only visit it now and then. So I apologize if I don't recall your full history. I do remember the autonomic issues. I am sorry about the wheelchair. It must be very frustrating-- how old are you? Do you have kids? I am 47 and have 3, 2 of whom are super young and a husband who now thinks Im crazy about 50 doctors appointments.
I do know for sure whatever I have is immune based. Whether that stands alone or has caused another disease is yet to be known. I am sure b/c I had a horrible case of mono as a teen and have never truly been right since. Plus I come at this predisposed- born with symptomatic mitral valve prolopase that needed open heart surgery so my autonomic system has always "run" differently.
My concern is that mine actually began with true seizures (documented) and yet I dont have epilepsy so I fear that there is some horrible neurodegenerative thing going on, even though I read you can have seizures with autonomic dysfunction and or CFS/ME. However, as to your comment about "the search" it will be winding down this spring/summer. I have two more specialists that are lined up and then I just have to make peace with the whole thing unless somehow I can make it to Mayo, etc. Although there isn't any test that they can do that I haven't done locally. If I could just pay for an hour for a rheumy, immunologist, and neuro to sit in a room for an hour together we could have this solved lickedy split!
Oh, and another comment the autonomic neuro said was well, you sense all this burning and pain, and Im sure its there, but your nerves are all still working, meaning I can still walk, use full power, etc. Sensory problems get no respect, I tell you!!! lol I wish my SFN biopsy would have been positive, that would have set me at ease more. But Im so scared this some "central" pain syndrome.
Enough from me. I hope you find your answers Ging!