I'm following up as promised. Still no diagnosis lol. It's not funny, but honestly, what else can I do? I went through so much the past couple of years. I'm having balance issues now which I originally thought was leg weakness. I'm getting a slipping/sliding sensation in my feet, indicating a prioproception (spelling may be wrong) disorder. MRI (now my 8th I think) still negative. I did not get contrast with my last one because I'm becoming allergic and it's intense. Blood work a few days ago indicated a slightly high MCH level. I did not see b12 on there which I was surprised because I requested that from my physician. Soooo, I'm left in the dark. I've started B12 supplements and exercise has decreased the past several months due to fatigue and other factors. I'm a little scared at times, I'm not even 30. Being scared doesn't really benefit anyone so I don't talk about it or show it. Anyways, in the past I was told this was anxiety by peers or physicians and for the record my balance testing at the University of Miami was normal but showed some issues, specifically with my eyes and tracking. I think Alena's visual issues are abnormal saccades. Dropping sensation, prioperception disorder. Feeling drunk sensation, could be sensory ataxia or cerebellar maybe. The cognitive issues, which I occasionally experience but hide to the best of my ability by writing things down and using my phone as a resource, can be due to overload of the senses. If you think about it, if your brain is trying to process so much, vision, balance, sense of touch, etc. and there's a disorder or disconnect, it bogs you down. I wish I had an answer to provide. I was hoping by now I would be able to help someone else out. I have a low positive titer for Myasthenia Gravis, but this condition does not cause sensory issues like I experience. I have the following:

Numbness

Coordination problems (walking easily, but not extremely noticeable, putting a car key in the door is difficult)

Muscle weakness (Could be MG, who knows, treatment doesn't improve symptoms too much) tongue, legs, arms, fingers, hands, neck

Vision issues describes EXACTLY like Alena. Insanely accurate, but it gave me hope that it wasn't psychosomatic lol.

Minor Cognitivie Issues

Depression/Anxiety (which I think any normal person would have some of due to the circumstances)



I'm still plugging away. I don't know my next step. I've thought of alternative medicine, even B12 shots but they're on back order at this local wellness center, my physician won't approve unless I'm low. I easily saw over 20 physicians and had probably close to 100 tests between labs and other diagnostics. There's an issue, but it's not extreme enough for them to notice. It's crazy, because I'm not the same person. I do not dwell on this, but what does bother me is that if there is a simple fix such as diet or vitamins, I don't want to miss out. On the flip side, if it has taken this long to figure out, what are the chances they could even treat it? I've been more nervous lately about my walking, I'm scared of losing my independence to a wheel chair. I don't know. I'll keep you guys posted if anything new happens. I just wanted to reply as a courtesy.

Eddie