Myasthenia Gravis

Posted by gcranor @gcranor, Jan 20, 2024

Is this the right group to learn about Myasthenia Gravis?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

wcburns2 | @wcburns2 | Feb 18, 2025

In reply to @flrvingbob "And there in exists the rub….”My understanding”. Social media, third party information, even forums like this..." + (show)

@flrvingbob

And there in exists the rub….”My understanding”. Social media, third party information, even forums like this are no substitute for personally taking action. There is no doubt, access to Center of Excellence health care is challenging, but ultimately “you are in charge of your health”….. So here is the process…. Gather All your records, imaging, tests result, anything you can lay your hands on (yes, it will become a part time job). Then contact Mayo’s scheduling and be prepared for some challenges. If you are OMG, you need to see a neuro-opthalmologist (ophthalmology department) If you are generalized MG, you need to see a neurologist. Be prepared to quickly provide your records (in an organized, newest to oldest order). You can contact either department’s scheduling directly…. If you end up in general scheduling, ask for the department’s scheduling desk at the clinic. Will you get in “tomorrow”, no. The more quality information you have, better opportunities. You will need to be patient, polity, calm, but persistent….your efforts will be rewarded. Personal point of reference. My wife screwed around for 6 months with local healthcare in the Tampa area. I finally said enough, we are going to Mayo (previous patient from the early days of the Jax location). We did what we needed to,do and within a few weeks, on our way. We have no doubt the provider we met with knew the issue before we walked in his office…..yes, they actually read the material provided to determine urgency, appropriateness, available resources and more. My wife is now 3.5 years in from the diagnosis and 4 years since her first symptoms. Is her care at Mayo Jax worth every obstacle and inconvenience…absolutely.

Point to all this is as I said up top….YOU are in charge of your own health and YOU, only YOU must take direct and constructive actions to gain the care you need. Forget the Google machine, social media and even be skeptical of forums like this….. JMHO, YMMV

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Hi Flrvingbob… well said and you just did a better job of explaining what I was alluding to. Agree with you 100%. You got nothing to loose.
In My humble option too

flrvingbob | @flrvingbob | Feb 18, 2025

More.... MG and OMG testing is done by blood tests (looking at 3 or 4 markers), EMG (the gold standard, especially for OMG), thyroid and thymus evaluation (typically CT and/or MRI). Both versions present differently person to person, but there are clearly "tells". There are "serro-negative" variants in which the "markers" test normal. Fact is this is a "process" and requires a physician with the history, knowledge, expertise and patience to "get it right" and then dial in the treatment (not cure) and maintenance plan....yes a moving target that will take patience and discipline from your side. There is no "quick" relief, only slow and systematic treatment. Yes, Mestinon will give quick/short term (hours) relief with some manageable side effects, but long term treatment is very involved, usually requiring some sort of "playing chemistry".

I have been with my wife for four years through this journey (yes, it's a journey) and can tell you there is no place like Mayo. I noted earlier, we spent 6 months being jerked around by 7 different physicians and only one got sort of "close" but was a moron to deal with. The Mayo system provides a different type of healthcare executed by "the best of the best". Their systems and coordinated efforts make visits nearly pain free. If they know you are "traveling" for treatment, they will do everything reasonable to "get you in" where you need to be once on campus. Now with that said, YOU must be patient, cooperative and flexible.

When I say "best of the best", I mean it. My recent interactions with two staff new to the Mayo system left me speechless. These two young (I have shoes older than they were) women had credentials for days, demonstrated a level of professional decorum fit for royalty and were first rate physicians to boot. The thing at Mayo is no one is operating alone and the "old guard" is deeply involved with the new "youngsters"....of which most are "home grown" through the Mayo school system. Even the old guard engages others in a coordinate, collaborative effort...

We travel to the clinic in our motorhome and always plan for a week around the primary appointment (and we make clear we are flexible). My recent appointments for routine "stuff" ended up a three week trip so I could accommodate their efforts to get me in for a procedure performed by a department head specialist....yes, my health is worth much more than my time as without health, you have no time.

Lots more to say but I will leave it here. No matter where you go (Mayo, Cleveland, Hopkins, Northwestern, etc.) you are in charge of massive efforts on your end to make the providers' efforts come to fruition. Yes, this missive is somewhat contrary to my previous post about "information sources", but it is all fact based on our direct, personal experiences, some dating back to the late 80s when the JAX clinic was a "Mud Hut" in the middle of a swamp.

MG/OMG is a life changing disease, not life ending, but none the less life altering. Attack it with all the ability and resources you can muster.... it's now you new career! Now get to a CofE for a proper diagnosis and treatment..... Here endith the rant....

cheryl46 | @cheryl46 | Mar 24, 2025

I am having frequent spells of bilateral weakness in legs, unable to move and bilateral eyelids drooping and unable to open or see.
These spells can last seconds or minutes.
They go away as quickly as they appear.
I have been testing for https://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/ that are negative.
Has anyone else had something similar?

funbobbelize | @funbobbelize | Feb 5 9:10am

In reply to @becsbuddy "@wcburns2 Welcome to Mayo Clinic Connect! I’m glad you found this site where you can ask..." + (show)

@becsbuddy
I tried but Mayo will not accept my insurance To bad gov does not step in and force Mayo to accept all insurances

kobebeef2026 | @kobebeef2026 | Feb 5 10:19am

In reply to @funbobbelize "@becsbuddy I tried but Mayo will not accept my insurance To bad gov does not step..." + (show)

Take it from an insurance agent, the problem is the government being involved.@funbobbelize

samsammie | @samsammie | Feb 25 6:00am

I have most symptoms of MG but I do not respond to IVIG and Pyridostigmine the way I should to receive the diagnosis from my neurologist. I'm in a kind of limbo. Having a Thymectomy in two weeks, hopefully this will provide answers.

chadnixon | @chadnixon | 1 day ago

It took me years to get “accidentally” diagnosed with Myasthenia Gravis. That was anlmost 15 years ago. Early treatments included massive dosing with steroids that caused terrible side effects. IVIG worked pretty good once every 2 weeks for years but began to affect my kidney functions and had to be stopped. Been fighting insurance to start Solaris but they won’t approve. One thing I have learned is to be my strongest advocate and to speak out. Happy to find this group.

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