I have generalised MG. Not officially diagnosed and general doctor tested for achr antibodies which came back normal. Regardless I have MG 100%. I record all my MG symptoms on video. Cogan’s eyelid twitch, enhanced ptosis (curtain sign), ice test, voice counting test etc. My symptoms improved to some degree on a course of steroids (taken for another condition).
I really need to see a specialist to check for the other MG antibodies (musk, lrp-4) but I could be seronegative (low-affinity antibodies that cannot be detected on standard labs).
Anyway, I’m glad I read your post as you mentioned eye drops so I had a look online and found this recent study on MG and Apraclonidine (also known under the brand name Iopidine)…
“Apraclonidine may alleviate ptosis secondary to MG and may be an effective alternative treatment for this group of patients.”
Hmm interesting. The mechanism of action…
“Apraclonidine elevates the eyelid by activating alpha-2 receptors on Muller's muscle, an accessory eyelid elevator muscle.”
Agha M, Ismail H, Sawaya R, Salameh J. Efficacy of apraclonidine eye drops in treating ptosis secondary to myasthenia gravis: A pilot clinical trial. Muscle Nerve. 2023 Aug;68(2):206-210. doi: 10.1002/mus.27851. Epub 2023 May 31. PMID: 37259693.
Hi and welcome to the Chiari forum.
May I ask, have you had ALL related conditions ruled out ?
Next, Are you saying the MRI indicated your spine is tethered again? If so, that is very possible for it to retether...
Everyone is different in how we are affected and much depends on what other conditions related or non related you have and your pain levels.
What we all tend to have in common is similar symptoms, but then it can get specialized again depending on what else is going on.And in addition to symptoms is Drs not understanding how we feel or recognizing what is actually going on to what they feel or think is going on, for this reason it is very important to have a true Chiari specialist...they should rule out ALL related conditions as well as non related before offering surgery.
Do you know if you have a syrinx?