Symptoms

[Texashere2023]

I started having symptoms over a year ago. I’ve had two EMG’s done by different people 8- 9 months apart that came back normal. I’ve had two MRI’s of brain and spine (second didn’t include lumbar) that came back fine, MRV, MRA, and tons of blood tests for autoimmune diseases, muscle diseases, blood clots, and more that have come back normal. No clinical weakness except on my first visit she thought my thigh was a little but that has improved she said and is normal now, brisk reflexes everywhere but told that can be normal when younger (one arm seemed different the first visit to neurologist but not both are the same) when they’re all like that, can walk on heels and toes and touch nose. I’m scheduled for another EMG in three weeks and am a bit nervous.

Here are my symptoms-
Weakness but can still do everything
Jaw tightness
Sometimes have felt like it’s hard to swallow a drink but improves
Sometimes feel like speech is harder but no one I know has noticed anything different when I ask
Electric shock on feet, wrist, and side of one o for certain movements that went away.
Altered sensation on legs and some on arm
Twitching all over that is still there but less
Dizziness at the beginning that has gone away
Blurry vision at beginning that has gone away (went to neuro ophthalmologist and told everything was normal)
Feels like the nerves going to my teeth are sensitive - not sure how to explain
Have had a tremor after working out a few times
Last few morning wake up with a feeling of internal vibration in legs but not moving
Limbs fall asleep very easily now while in sleeping
Hip sometimes feels achy and weak but when stretched can start to feel better
Had issues going down stairs has improved but not completely better

I am going for a second opinion in three weeks with a neuromuscular neurologist bc my current neurologist specializes in MS and has no ideas.

Any ideas.

[TremorGirl]

Hello, I’m having the exact same symptoms and have seen what feels like hundreds of doctors without any definitive answers…have you gotten any closer to a diagnosis and treatment yet?

[Texashere2023]

No, I haven’t. My speech and swallowing has greatly improved but I have been having some random cramps occasionally. I’m not sure if that’s pregnancy related since I’m in my third trimester. I had another EMG in July (14 months after symptoms started) that came back clean thankfully. I have felt like it is easier going down stairs but going up is tiring sometimes but can definitely do it being pregnant and carrying a two year old. My fork has had an occasional tremor when holding it very still or a tremor in my finger right when waking but goes away. I have an altered sensation on my back and legs but thankfully I can still do everything.

What have some of your doctors thought it could be? Have all your tests been normal too? Sometimes I wonder if this is all from Covid since symptoms started 5 months after having Covid.

[Texashere2023]

Right now she thinks it’s parathesia or BFS - which I hope it is. I have a follow up with my neurologist in May and will probably have another EMG performed in July. She said some people like to have them done a year later so I probably will.