Right sixth nerve palsy
Hello. I had a right sixth nerve palsy that resolved spontaneously within 2-3 weeks. Modulating ab showed increased activity. Other 2 abs were normal. I saw only two case reports in the medical literature with similar presentation, not even sure if the same ab was positive. Do I have MG? What can I expect going forward? Anyone with similar presentation?
Thank you for sharing your story. That must have been very difficult for you, your mother, and your father. I was upset about waiting 17 minutes on hold just to leave a message. You shouldn’t have to wait six months. I would start getting pushy if I were you. Not that you need advice, but I would call daily until you get a response and if you don’t hear anything escalate. I would also seek alternative pathways to the same goal.
Coincidentally, the first author on the paper about false positives has since moved to my city. I am trying to get an appointment with her so I can get further insight.
Whatever anyone thinks, I will need to have contingency plans in place if I do have recurrent symptoms or progression.
I hope things go well for you. Thank you for your kind words.This is the first time I've heard of right sixed nerve palsy. Only 11 in every 100,000 people get diagnosed with this a year. I read that it can heal over the course of a few weeks. Did you take any medication for it?
Modulating ab (antibodies) have been discovered in many MG patients but we cant say whether or not you have MG. I recommend keeping a journal and writing down all your symptoms and how often they occur and contact your doctor.
I apologize for not being able to give you the answers you seek but I do hope you feel better soon and get a proper diagnosis so you may move forward to the road of remission. - Jazmin (MG team member)
Thank you for your reply. Keeping a journal is a good idea. I did not take medication.
The one case in the literature was seronegative but was tested with edrophonium and EMG to support the diagnosis. There may have been another I saw with MuSK ab positivity. I can’t get an appt with an MG specialist to whom I was referred by my neurologist until November.
There may have been another report in a patient who was MUSK positive, if I recall correctly. My neurologist says there are no false positive ab tests but I found an article that reports on false positives, somewhat contradicting what he said. Maybe clinically and practically they call the diagnosis with any symptoms and any test.
To your point, it is more important that I know to what degree I have symptoms. If my eyelid starts dropping or if I have generalized weakness, then I will suspect MG symptoms and seek attention. If it never happens again, I am fortunate.
My heart goes out to those on the forum.Yes I agree. Especially with so many people with Myasthenia gravis, how can any doctor be 100% sure that no one has had a false positive reading.
But yes keep a journal and keep track of everything. Everyone is different. For me when I suspected something was wrong with me. I woke up one morning and I couldnt spit when i was brushing my teeth, it's like I lost all control of the muscles in my mouth. Then I had double vision, droopy eyelids, slurred speech and my legs would give out randomly. I was 17 at the time and my mom thought I was being dramatic and refused to take me to the hospital. It was my dad that had to convince her that I wasnt joking and something might be seriously wrong with me. I was in the middle of an MG crisis without any knowledge of the disease. It took 3 months for me to be properly diagnosed with MG.
Those referrals take a long time indeed. I moved to a different state in January and I'm still waiting for a response from my referral to get a primary doctor and neurologist. Please let us know in November how everything goes after your appointment.
I pray you dont have MG. You've been fortunate to have your sixth nerve palsy heal on it's own and It'd be great to know you dont have Mg. - Jazmin (MG team member)
