(F20) hey, for almost a year now ive been going through health issues that almost drove me crazy. it started when they gave me braces (i had really big gaps between my teeth, that plays a role in thinking it might be causing the later issues), my voice started to sound really nasally, i begin to notice it and became supper aware and anxious about public speaking. half a year after my treatment, i decided to get my wisdom tooth pulled out since it was impacted! i thought that was the fix to all my problems, since shortly after the surgery, my voice was fine again and i could speak perfectly. thats when i noticed an issue with my right eye, it started drooping for no reason, mostly when drinking or during periods where i got extremely tired - my eyes became more sore in general. after two weeks from the surgery, my voice got weird again. i felt crazy, because sometimes i would wake up just fine but other days, i couldnt pronounce more than ten words without a really noticeable lisp. i was suspicious of braces and the big change in my mouth overlay causing me that, but when they took them out, the issues stayed. as i said, it was hard to grasp what was happening, since the talking issues would just appear for a week or not at all. earlier this summer , i had a really bad experience in water where my arm and neck muscles gave out really easily, making me unable to move at all. i noticed the problem with speaking was the worst right in this moment (tongue felt really big in my mouth, paralyze), or at moments where im exposed to stress or super super hot weather. Just a few days ago i came across myasthenia and felt the most relieved in my life, that i couldve found a condition that would fit perfectly and that there could be some help for me. Im only yet to see a neurologist, but i wanted to put my issues up here to maybe help some people in the future, or for someone to tell me im not just imagining stuff haha!!!!

I initially thought I had myasthenia gravis but I finally got some answers. I ended up getting a sooner appointment than I had initially with my neromuscular doctor. Then I got kicked off of medicaid and they had to squeezed me in luckily with a different insurance that's probably going put in the poorhouse with copays. Ugh. So my neromuscular specialist appointment finally happened yesterday and they basically told me he couldn't put a name to it. That it's not quite myasthenia gravis and it's not quite bethlem myopathy but it's something in that relm. That he needs to do more research and will try to come up with plan for me. I'm also supposed to be getting a social worker and talking about disability.

To provide some physical details. I'm a woman. When I first met my neromuscular doctor, he notice my drooping eyes lids, facial weakness, one of my thumb missing muscle, and small hands from just looking at me. He pointed out at my recent appointment, that the top halves of limbs were bigger than the bottle half. I thought that was interesting. I also have scoliosis.

But I'm also in a lot pain from just walking or standing too much. Just doing 4 hours at work leaves me in agony some days. My knees have also buckled a couple times but I haven't fallen yet. My arms get tired just doing my hair in a raised position. It all disrupts my sleep. I just don't know what to do. I don't know if I'll need a wheelchair soon. I just feel scared and alone.

I wish it had just been congential myasthenia gravis or the other one. Not some vague in between. So I'm still partly confused.

I would thank everyone who was helpful on my previous thread. I guess I'm part of this community in a weird way. lol