gits say I have it, others say I don't; that I'm not typical). I've been seeing the same neur. for almost eight years now; he believes I have blepharospasm instead of ptosis. My symptoms include extreme fatigue and if I keep pushing myself, I end up in the hospital with solumeterol steroids given IV injections which help alot. When I am fatigued, my eyelid/eyebrow will "droop" and my right side of face looks distorted and I also get hoarse. When I get rest, then my face looks "normal" again until I get tired. I take medication for MG. I finally let him botox me, which was a mistake because the same symptoms I experience when tired, went to the left side of my face which had never, never happened before (I seem to puzzle my neurologist!)! He wanted to botox again and I said NO. One internal doctor told me never to get it again! Does any of this sound like blepharospasm? I understand, through research, that there should be a twitching of the eye, which I do not experience.Do some of you only experience this "distortion" when you are fatigued and are treated with IV steroids for this condition? Do you also get hoarse only when tired (an ENT specialist went down my throat and said the weakness is due to MG... I sincerely don't think my neurologist listens even when I take him other doctors' reports!)? I thought botox was what is used for blepharospasm (I only know one person that has it and we both agree that my symptoms are very different from his!!! ). I truly believe I don't have this condition, just that I am atypical Myasthenic. I appreciate your ideas. Thanks alot!!!
Blepharospasm generally refers to excessive nerve activity, resulting in uncontrollable blinking or forceful squeezing of the eyelid muscles. Botox is the usual treatment. The mechanism of Botox is to block the nerve transmission of acetylcholine. The goal is to temporarily weaken the muscles.
In MG, there is a deficit of nerve activity. Weakness occurs because of inadequate transmission of acetylcholine; the transmission is already being blocked. Botox and MG do generally the same thing, weaken the muscles by preventing the transmission of acetylcholine, they just do it in slightly different ways. So if you had MG, I would think Botox would make it worse, not help it.
When you say "distortion" I don't know if you mean spasms that contort your face, or if you are experiencing weakness that makes your face droop like you've had a stroke or Bell's palsy... that would be an important distinction. If you are not having any kind of spasms or abnormal tension in your eyelids or face, it would be hard to say it sounds like blepharospasm, but I am not a doctor, either.
I experience both episodic blepharospasm/facial spasms, and episodic ptosis/facial weakness, but not simultaneously. They are very different phenomena. My docs are puzzled as well. A couple other possible causes of transient ptosis include apraxia of eyelid opening (ALO - which can have several causes) and periodic paralysis. A couple people I know have an autoimmune form of periodic paralysis associated with VGKC antibodies, I think steroids would help that condition as well. There is also one form of episodic ataxia that includes fluctuating myasthenia. And, whatever other conditions I haven't learned of yet...
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