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

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!!

Hi Kay56, it seems that you had a real struggle but came to the root of your problem. Congrats on your support to others! I know that statins have many side effects, so a small comment on cholesterol, if that may be of any assistance.

Background: I have a rare autoimmune disease called CLIPPERS (Chronic Lymphocytic Inflammation with Pontine Perivascular Enhancement Responsive to Steroids) - less than 1000 people in US have it. I was initially diagnosed with MS (multiple sclerosis) 2.5 years ago (then aged 62) - had quite a struggle to get the right diagnosis as most neurologists do not know about the disease. I am in South Africa and my neurologist has only 3 other patients with CLIPPERS. I also have osteoarthritis with joint and muscle pain part of my life, but I stay clear from statins and anti-inflammatory meds through exercise.

I read widely about CLIPPERS and the influence of diet and high cholesterol. I came across Dr. Robert Lustig, an endocrinologist (https://robertlustig.com/) who works on metabolism and the role of sugar. His book, Metabolical, makes interesting reading on how sugar affects your liver and gut health. He has no specific diet preference, but suggests the elimination of sugar and processed foods. His message is simple: Protect your liver, feed the gut. This helps lessen inflammation, which is the basis of all autoimmune diseases.

He has a view on cholesterol measurements, i.e. HDL, LDL, triglycerides, etc. (I have high LDL, high HDL, low triglycerides.) According to dr. Lustig, the small dense LDL is the "bad" part of LDL. This can be measured, but is not part of the standard lipogram. However, it can be calculated as the ratio of triglyceride to HDL ratio. If the ratio is 1.5 or lower, you do not need to take statins (https://www.levelshealth.com/podcasts/the-ultimate-guide-to-understanding-your-cholesterol-panel-and-metabolic-blood-tests-dr-robert-lustig-dr-casey-means). There is a rare exception, please refer to the video and/or transcript and speak to your own medical professionals.

I hope your MG symptoms continue to be managed successfully. Best of luck with your awareness and education campaign!
Kind regards.
Ria

Thank you so much for reading my MG post and replying. I was just talking to my son in Marietta, GA who is always telling me about dietary help with diseases. I sent him the links you shared about Dr. Lustig's book and cholesterol. I know he will surely look up the book and get excited about the sugar in diet information!