Myasthenia Gravis post COVID

Posted by ephrum @ephrum, Jun 9, 2023

After all the usual long covid fun, I started with blurred and double vision. OptometrIst suspects Myasthenia Gravis. Since it is also an autoimmune disease, no surprise here. I have appointment with neurology opthamologist in 3 weeks. Anyone else diagnosed with MG?

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

I would also suggest seeing an opthamologist re. Your eyes. You may have other things wrong with your eyes. My sister has MG but it was diagnosed when she fell down. Double vision came much later.

REPLY

Thank you. Yes, I am seeing a doctor qualified in opthamology and neurology. Problem is long wait, as usual. I am wondering if all this trouble has been MG not long covid.

REPLY

Hi Ephrum:
Like you, I started with slight double vision. The eye muscle involved lends them to suspect myasthenia and they probably noticed worsening when they intentionally fatigued it with some exercise during exam. They tried an tensilon injection which they use for further confirmation (if it works, it temporarily improves the issue) and hence, it further confirms the myasthenia diagnosis. If only ocular symptoms are present, it often does not work, and hence an opthamologist that is experience with myasthenia is good. I was then referred to a neurologist, Dr. Richman, at UC Davis, that had studied myasthenia since residency and collaborated with the a renowned myasthenia doctor from UCLA. He recommended an early intervention and I had a thymectomy performed at UC Davis by a doctor who had done 100 of them (as of 1996) and was presenting papers to the Thoracic Surgeons Society regarding techniques. 100% remissed within 2 years and no re-occurance over 27 years! I was 45 when diagnosed. I considered the transervical technique done at USF, but my surgeon said, "the thymus is often tangeled up in veins or arteries, and they have to immediately go through the sternum." He likes to see that it and make sure he got all of it. I gambled on the thoracic specialist and it turns our mine was all wrapped around arteries like he said could happen. You can bench press in three months. At a followup seminar with Der Richman, He was wincing at some of the comments about what other's doctors were telling some of the patients in attendance. I could answer most of the questions asked with the expertise I received. Check into the Myasthenia Gravis Foundation for tons of info. I wish you the best and I pray that your outcome will mimic mine given the similarities of how your symptoms and mine seem similar. I hope this was helpful.

REPLY
@jmattiii

Hi Ephrum:
Like you, I started with slight double vision. The eye muscle involved lends them to suspect myasthenia and they probably noticed worsening when they intentionally fatigued it with some exercise during exam. They tried an tensilon injection which they use for further confirmation (if it works, it temporarily improves the issue) and hence, it further confirms the myasthenia diagnosis. If only ocular symptoms are present, it often does not work, and hence an opthamologist that is experience with myasthenia is good. I was then referred to a neurologist, Dr. Richman, at UC Davis, that had studied myasthenia since residency and collaborated with the a renowned myasthenia doctor from UCLA. He recommended an early intervention and I had a thymectomy performed at UC Davis by a doctor who had done 100 of them (as of 1996) and was presenting papers to the Thoracic Surgeons Society regarding techniques. 100% remissed within 2 years and no re-occurance over 27 years! I was 45 when diagnosed. I considered the transervical technique done at USF, but my surgeon said, "the thymus is often tangeled up in veins or arteries, and they have to immediately go through the sternum." He likes to see that it and make sure he got all of it. I gambled on the thoracic specialist and it turns our mine was all wrapped around arteries like he said could happen. You can bench press in three months. At a followup seminar with Der Richman, He was wincing at some of the comments about what other's doctors were telling some of the patients in attendance. I could answer most of the questions asked with the expertise I received. Check into the Myasthenia Gravis Foundation for tons of info. I wish you the best and I pray that your outcome will mimic mine given the similarities of how your symptoms and mine seem similar. I hope this was helpful.

Jump to this post

Thank you so much for the info. I see a opthamologist/neurologist Monday and hope to get a clear diagnosis. I am learning to cope with the double vision but the weakness and exhaustion are debilitating. Hopefully I will get some help. Thank you again.

REPLY

Sorry to hear you may have more involved voluntary muscles.
They try and rule out MS, as that is more common.
I invented a work-around for the double vision though, which will help with eye-strain to focus, closing one eye and with driving depth perception which goes away if you patch one eye.
Double vision is caused by one eye not moving all the way to the peripheral, but the other eye can and it crosses into double vision when one eye stops moving.
Prism lenses only work while your eyes are out whatever correctible amount at that particular time. They can change quickly and render the perscription worthless.
Do this instead: Take a pair of glasses (I don' t wear them, so I got some. Had Walmart install clear, non-presctiption lenses.
Take some cardboard and experiment with blocking part of the outside of the lense on the eyeball that will not go to its peripheral.
You will do this for up and down also. Once you have figured this out, you will see forward with both eyes, but you will be blocked where your one eye crosses over the non- moving one. Now substitute opaque scotch tape in place of the cardboard. You will most likely have the inside lower square of one lense taped, but hardly noticeable to anyone. Your eye doctor or ophthalmologist could help you, but I just played with it till I got it right for me.
Lastly, get a thymectomy if you do have myasthenia. I never went on immuno suppressive drugs like prednisone.

REPLY

Thank you again. You are describing exactly what is happening to my eyes. I have learned to close one eye when looking to left, right, up or down. Central vision is double and blurred when I first wake up but clears in a short time. I knew early on the muscles behind my eyes do not coordinate. Hopefully I will get some help from specialist. Helpful to hear from someone with same condition. I understand it is rare.

REPLY

Thymectomy completely re-issued the symtoms.

REPLY
@jmattiii

Thymectomy completely re-issued the symtoms.

Jump to this post

Re-issued? Caused symptoms to return?

REPLY

My mom is having severe problems walking after covid. In a wheelchair half the time. Neuro doing test for myasthenia gravis. Has anyone had this develop after covid
Thank you to all!

REPLY
@hopefuliny

My mom is having severe problems walking after covid. In a wheelchair half the time. Neuro doing test for myasthenia gravis. Has anyone had this develop after covid
Thank you to all!

Jump to this post

Hello!I think I sent you a response on another message you sent out about your Mom.I have alot of symptoms of Myasthenia Gravis as well.Trouble walking,slow talking,swallowing,and weakness in the face.One Doctor checked me for Myasthenia Gravis and I had one antibody for that specific test that was borderline,but labcorp did more testing and said it was nothing.I had a Neurologist check for seronegative Myasthenia Gravis and that test came back negative.I think it is possible to have Myasthenia Gravis and it not show up at all in the blood.Myasthenia Gravis is one of the Diseases that can come on after Covid.The drug mestionon that is used to treat Myasthenia Gravisvis being used at Long Covid Clinics now to see if it helps patients with muscle strength.Mestinon gets the signals between the muscles and nerves functioning properly.Steroids can be used in treating MG along with infusions as well.I wish I could try mestinon just to see it would help,but doctors are hesitant unless you have a positive test.

REPLY
Please sign in or register to post a reply.