NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Newbie looking for advice about symptoms and appointments › Reply To: Newbie looking for advice about symptoms and appointments
Barbara, I’m not entirely sure exactly what my blood has been tested for. I’ve asked but haven’t been able to get detailed answers and so now I am trying to get copies of the results so I can have a checklist of everything that has been tested for and what the exact results were. I do know that my blood was sent to have specific testing for mitochondrial issues that I believe only a few locations in the US actually perform. I was given the vague answer that my results did not show a sign of mitochondrial dysfunction but “that doesn’t mean it isn’t there.” Nothing has been officially ruled out so MD is still included in the long list of things that are possibly going on. After I mentioned EDS and Dysautonomia to my doctor, she seemed to think that a connective tissue disorder was perhaps the cause of my problems and that it could replace the Mito/MD theory. I haven’t abandoned it myself because I am simply remaining open to where the evidence takes me. I assume nothing. Within the first half hour of my very first appointment with my doctor (last December), she seemed concerned and I could tell that she thought something was wrong. In my second appointment, she mentioned that I have muscle wasting in my right hand (dominant hand)and that in combination with muscle weakness and weird muscle tics led her to suspect Muscular Dystrophy. I had some nasty hits to the head as a kid so I was sent for a brain MRI and my doctor also set me up to meet with a neurologist. Since the neuro appointment went terribly, it seemed like everything just kind of got stuck and months have been spent simply trying to find anyone who would be willing to meet with me. I recently had a tilt table test and my heart rate and BP were weirdly stable the whole time but I almost fell on my face as I was getting off of the table. The nurse immediately asked if I have MS. I do seem to have symptoms similar to MS and MD but there is so much overlap with so many things that it is hard to figure out what is a good lead and what is not. A neurologist that I am seeing in September supposedly has good experience with autonomic dysfunction as well as neuromuscular issues and movement disorders. I was being sent to him for Dysautonomia but I’m going to throw in my tremor and MS/MD issues as well. Squeeze as much info out of him as I can get. It was just by chance that I came across info on EDS and later Dr. Driscoll and it all makes so much sense. Mito/MD/MS potentially might fill in the blanks for the weird things left over that EDS does not explain.