Double Vision and Autoimmune Diseases like MG: Can anyone relate?

I have TED (thyroid eye disease) and am about to start infusions with Tepezza.
Does anyone else have a similar situation or experiences with TED?

Had ocular symptoms only. Early intervention (thymectomy). Complete remission.
27 years good. Never on immunosuppressents

I had a thymectomy with only presenting ocular symptoms. Never progressed further, and complete remission 27 years so far. Never took immuno suppressive.
Good luck.

I developed ocular myasthenia gravis after I completed radiation for my breast cancer ( November 2020). I never took a steroid. My ocular MG went into remission June 2021. I had both cataracts removed and both upper and lower eyelid were lifted. My right upper eyelid drooped with my MG. Double vision in the beginning but went away.

It could be the diagnosis isn’t correct or else you would also be taking Mestinon (pyridostigmine bromide) to help with your symptoms. Mestinon is typically the first drug prescribed for MG. For me Mestinon alone didn’t help at all even at high doses with my droopy left eyelid and double vision until I was started on Prednisone. When I reached the 40mg Prednisone level the double vision started to go away and is currently gone while now I am at the 20mg level and taking Mestinon. Have you had a positive diagnosis of your MG?

I started ocular (droopy eyelid and double vision). Neurologist opted for early intervention thymectomy. Completely remissed within two years. That was 27 years ago. Never went on drug immuno- suppressents.

For Myasthenia Gravis, prednisone does usually help symptoms quickly. However, the side effects are bothersome for most. Another medication is usually prescribed along WITH prednisone and prednisone dosage is scaled down.
I have Myasthenia Gravis (MG). I have researched every REPUATABLE sites for all MG information. Finding information and getting correct treatment were definitely not the same! Once I found a neuerologist (after 2 yrs) and got the correct treatment, my MG stabilized. I never did use prednisone, my choice not to. IVig infusions stabilized my MG until the IMURAN (azathioprine) was able to 'hold its own'. I have only taken the Imuran for more than 3 years and am doing well.
Once my MG was stabilized, I started the MG RGV Support Group in the Rio Grande Valley way down deep in Texas. I continue to research MG. MG education can save your life! Many do not know the difference between a cholinergic crisis and a Myasthenia Gravis crisis! Two of my support group members were only prescribed Mestinon by two different neurologists. One person was being told to take more Mestinon, take more Mestinon until he was up to 16 tablets a day! He was bordering on a cholinergic crisis. If how much Mestinon has been taken and MORE Mestinon is given thinking Myasthenia crisis instead of cholinergic crises can have very serious consequences!
It is most definitely important that your medical professional KNOWS MG!!

Wow @kay56 Welcome to Mayo Clinic Connect! We’re so glad to have you here to share with other members. You are so right, education is THE key to dealing with autoimmune diseases! You seem to have done all the correct things and you started a support group. The Autoimmune aAssoc is have a 2 day virtual conference in October that you may want to check out. They also have great newsletters.
https://www.accelevents.com/e/aicommunitysummit2023
If I may ask, how did you find Connect?

I have thyroid eye disease and so does my sister. We just keep getting new prism glasses. It's definitely annoying. When I was first diagnosed in the 1990s they were afraid of myasthenia gravis which I don't have. I also have a normal thyroid but my sister does not. I don't know about tepezza. Will have to see about that.

Oh NOOOOO! I wanted to bold part of my first reply and I hit ctrl+B to bold a couple words and it got totally out of my reply and went???
I don't remember exactly how I found Mayo Clinic connect but it was probably during my consistent search for any Myasthenia Gravis information I can find from REPUTABLE sites! I checked the Autoimmune Disease link but was disappointed that Myasthenia Gravis is barely mentioned and had no 'folder' of its own within that link. Myasthenia Gravis (MG) symptoms were documented in the USA during the late 1600s, in Europe in the 1700s but had no name at that time. The name Myasthenia Gravis was given in later years. There are 6 symptoms of MG that may start with one, then another, etc. until full blown gMG has occurred in some patients. From the late 1600s until the current century is FIVE CENTURIES yet MG is still largely disregarded by most medical professionals. One doctor said during his residency slides on rare diseases were being shown. As soon as the slide on MG was displayed, the instructor stated 'this is very rare, you'll probably never see this'. The slide was gone before the students could even read it!! Ask anyone who has FINALLY been correctly diagnosed with MG how many doctors, specialists of all sorts were seen BEFORE they were FINALLY correctly diagnosed.
I recently spoke to a doctor who has FINALLY been correctly diagnosed with MG. The doctor had been diagnosed by colleagues as having MANY other diagnoses, even psychological, NEVER once thinking of MG even though ALL 6 MG symptom were very evident. I recommended the doctor see my neurologist who is in his late 50s and is very experienced with MG. The doctor with MG is sero-negative (ACHr antibodies are not present or are not at levels high enough to be declared MG). There are two tests, one of which diagnosed my MG, that are now considered 'obsolete'; the Tensilon test and the single fiber test. My neurologist (now also the patient doctor's neurologist) sent the patient doctor to one of the VERY FEW who still know how to correctly administer the 'obsolete' single fiber test. YES the doctor patient IS MG positive although sero-negative.
The problem with MG being disregarded is twofold. Firstly, the general public DOES NOT KNOW MG SYMPTOMS. Sadly, neither do the majority of ANY medical professional, NOT EVEN SOME NEUROLOGISTS. Two members of the MG support group I started in 2019, after my MG was well stabilized, were told by two different neurologists to take MORE Mestinon, more Mestinon, more Mestinon. Mestinon only covers the symtoms, DOES NOTHING to treat the actual auto-immune MG disease ! If doctors do not know the difference between a cholinergic crisis, brought on by taking too much Mestinon, and a true Myasthenia Gravis crisis, which have the SAME symptoms and the medical professional does not know to ask how much Mestinon the patient has taken, then gives more Mestinon, which would be correct for MG crisis but NOT for a cholinergic crisis, possibly even fatal consequences can occur!
That is why I constantly do research on MG. MG EDUCATION can save a myasthenic's life! There are many things that can seriously worsen MG, even MANY MEDICATIONS are contra-indicated!!
I was hospitalized for a dangerously high blood pressure. The hospital staff doctor ordered a change in my current blood pressure medication to a betta blocker, a magnesium supplement (my magnesium level was at an acceptable level, although at the bottom of that acceptable level) and ordered a statin for high cholesterol (which I have had for over 40 yrs-genetic, Rx for which only lowered my cholesterol level by 8 points), all of which are contra-indicated for a myasthenic. Had I not known these facts, I certainly would have worsened my MG which is NOT why I was in the hospital at that time!!
More MG awareness is DESPERATELY NEEDED. Firstly to make the general public aware of MG symptoms AND for medical professionals to be made aware of and acknowledge MG symptoms!!