Reply To: HELP! FEEL SO LOST IN ALL OF THIS
No MRI with contrast was done. Only without. I only had the brain and cervical done and the only thing that came up was degeneration on C4-6 (minor stenosis). My new neuro did suggest a skin biopsy to rule out SFN (small fiber neuropathy). She is only performing the EMG/NCV test on my left leg and left arm. I plan on telling her that my symptoms have increased since our last visit (roughly 8 days ago). I was not aware that this site has a Centers of Excellence for specific doctors who focus on this condition but I will most certainly check that out. I am with a neuromuscular neurologist at Emory named Vita Kesner. She did do a very thorough evaluation. My next test is tomorrow, 3/16. None of the doctors have suggested a spinal tap yet but that is another question I will have for her. I am certainly willing to pay for it. Considering this has been going on for two months now and doesn’t seem to be easing up, I certainly feel like something is going on.
Much like you just said, the fact that I responded beautifully to the steroids is another reason why I cannot help but think/wonder that there is some type of serious inflammatory condition going on. But I guess I am stumping my doctors because they equate autoimmune to high sed rates and high C reactive numbers and mine have been in normal range. I even had an ANA done (albeit only about 14 days after symptoms’ started). Any additional advice/insight you have would be greatly appreciated. I would certainly say, I’d love to be on the steroid right now but I think doctors tend to think they are too dangerous but my quality of life is diminishing exponentially
I should probably add that when the initial neuro eval was done, I kept trying to tell them, I do not feel like I am numb. This is not pins and needles (although as of recently I am feeling some of this and some weird burning sensations in my hands…this has literally developed in the last week). She kept poking me with a little stick to see if I felt things the same all on my legs, arms hands and feet. I could feel everything relatively well but the “sensations” which feel like buzzing/crawling/low current of electricity running through me were still going on. These sensations do not affect my ability to not feel things.
I basically feel like these neurologists have no idea what I am talking about but it’s funny because I have read so many places people describing exactly what I am feeling. Also, I should add that the sensations were localized to a “stocking and glove” distribution but I am now feeling them move upwards so into my thighs and now upper arms. It’s a slow progression but I feel it happening