Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi. Six months ago I was healthy, riding my bike 20 miles a day. Then I had a Covid booster (strong reactions to first 2 shots but regular symptoms). Two days later I was experiencing vertigo, nausea, etc. Three and a half months of my docs sending me for vestibular/auditory tests with no confirmations, they gave me prednisone for 1 week to see what happened, and it eliminated the vertigo and nausea completely. However, I was left with severe imbalance, staggering like a drunk person out of control. More tests, mri, etc., now it's almost 6 months and I still can't walk without hanging on to something or i veer off and stumble and fall. So why am I here? The neurologist I saw 3 weeks ago says I have MG. Blood tests were all negative. He gave me mestinon to see if it helps (my only symptoms are speech slurring which began 2 months ago just before I took the prednisone), the staggering, and a tiny bit of infrequent double vision only if my far peripheral vision. He did in-office muscle testing and said it was MG. The mestinon seems to maybe help with the speech slurring but it also seems to make my staggering much worse. He doesn't know why. He also doesn't know why my left arm has much worse motor control than my right. Again brain MRI showed nothing. I have a C-spine MRI this coming week.
As someone who lived to hike and bike, this has been devastating. Not to mention I can't help take care of the house, etc. If you can't walk without holding on to a walker or walls, you can't really do things like trimming hedges, etc.
I "think" maybe there's 2 different things going on, maybe MG (speech) and something else with my balance but apparently it's not inner ear. I'm just super frustrated, 6 months of my life (in my so called golden years) down the drain so far. I don't know whether to cancel the hiking trip to Glacier for August that we reserved more than a year ago. I hate uncertainty, lol, so this is probably the worst disease for me; I had cancer (35 years ago) and was fine with it because it's pretty clear cut what to do and what will or won't happen.
I guess I'm wondering anyone with MG does not have eye problems, breathing problems, swallowing problems, but just slurring and maybe leg muscle weakness? I don't know if my neurologist knows his stuff or maybe it's just his terrible personality, lol. Anyway any advice from folks who have been through the diagnosis process, maybe what I should ask or tests or other stuff, would be greatly appreciated. TIA.
Sorry to hear about all of the health issues you are having.
Although your symptoms are not the typical ones for MG, you do have some of them.
Generally speaking, MG is diagnosed with several blood tests (for different types of MG) and if those are negative, with a single fiber emg test.
MG is where the communication from the nerve endings to muscle receptors is blocked. It is distinctive in that our muscles tire much faster than normal people. For example, a test my doctor used to ascertain the level was having me pull against his hands with mine -- sort of a tug of war and although I could initially hold my own, with in a few seconds, my muscles quit.
Another problem with MG diagnosis is that there are all sorts of levels and symptoms -- from eyes only, head only or other parts of the body, although typically the eyes seem to be the most sensitive in the ACHR positive (blood test) type of MG.
I think I would not be satisfied to accept the diagnosis that everything is from MG. Your symptoms seem to show more than just MG, and possibly something completely different.
Prednisone works for almost any autoimmune disease, so if it is MG or another one, it would help.
Mestinon is a good test for MG as it does mostly only help folks with MG, but not for all types of MG. For many of us it is dramatic.
Your symptoms are certainly distressing, and although in the range of what MG might do, not really typical for many of us with MG.
Finally, those of us with MG often have to keep trying to find an neurologist who specializes in MG, and one that we can trust. I think if one goes to the biggest medical center in your area (i.e. a university hospital or Cleveland Clinic or Mayo Clinic) you are likely to find a real MG specialist -- and that makes a great deal of difference -- at least it did for me.
Good Luck
Russ
sorry to hear the troubles you have gone thru, as a generalie mg patient, these seems to be not related, first thing i ould suggest you get a SPECIALIED MG NEURO.
i just going to mentions my experiences after i got my first 2 covid shot ( second being the booster, every body reat differnet from shots, meds ect
about 7 days in my booster shot, as i was getting ready to take my morning walk, i woke up, very seazy nausea and some vertigo, as i got to my front door i was unable to put a foot in front of the other, due to i may fall or at worst pass out,
from there on it took 4 1/2 months for the booster to release its grip on me, causing me one morning as i was sitting at the table driking my op of jo, to fall a sleep or passed out for about 5 minutes,. then got back to be myself,, consulte with the npr, as my neoru was out of town, so the idiot unstead to consult what happened with the doctor, send a memo to the DMV for license suspention., had to go thru hell with tests but was cleared with flying colors.
but at 83yrs i whent trhu hell and back, so by what you experienced it may have been due to the booster shot, mine was given 2 days after the ist, and to me that was to close as this vaccine was knew and poverfull. now after my second booster i am still around and duing well
also i want to mention that Russ has sone good points
best of luck
Andre
sorry my computer dint register right on the booster time it was not 2 days but 12 daysthank
Andre
i do not beleive in coincidence it doesnt enter in the scope of medicine at least in my understand.
best of luck
Andre
However, it may not show up if you don't have eye issues.
Most of us have all sorts of other diagnoses before the doctor finally finds we have MG, rather than thinking of that first.
Good Luck
Russ
So sorry to hear about your struggles.
My wife and I were both pretty active before MG hit me. Bicycle riding, 14 to 20 miles 3 to 4 times a week was normal for us. Now because of my balance and sight issues I can no longer ride. I always have a slight amount of double vision and I think it leads to my balance issues as both eyes do not always focus on the same object. It is most difficult while in crowds. MG has been a life changing event in our lives. We travelled Full-Time in our 42' diesel pusher and had to give that up too. 2 years after diagnosis and treatment, Mestinon, Prednisdone, Imuran and monthly IVIGs my strength level is about 20 percent of what it was and sometimes less than that.
I also have some symptoms that do not fit into the classical MG paradigm. My neuro says regardless of the additional symptoms that I have, the treatment would remain the same. I receive medical support from the VA here in the Houston area. My neuro's first specialty is ALS and his 2nd is MG. He takes a conservative approach and so far I have followed his orders regarding treatments. I also had my diagnosis verified through the use of EMG tests.
For me, Mestinon does not have the positive effect that it has on others but I still take it every day. Prednisdone has been a necessary evil. I now take 10mg every day down from 20mg that was prescribed when first diagnosed.
So much depends on you relationship with your PCP and Neuro. If you do not feel comfortable with your current neuro you might wish to seek a 2nd opinion.
This disorder/condition/disease has had major impacts on our lives. What used to take me an hour or two to accomplish, now takes one to two days due to severe body fatigue.
Good luck. Your life is not over. It has changed.
Scott
Even if you are barely pedaling, the psychological benefits of being out on. a trail in the fresh air is enormous.
Today was the C Spine MRI so I'll probably hear back about it by the end of the week. I do suspect I have MG, even though mestinon doesn't rock my world, and my symptoms are not totally in line, but I think there is something else going on, too, and it's a bigger impact on my life right now. I think my Neuro locked in on a diagnosis and now doesn't see anything else, but I'm going to see what he says about the MRI. My primary doc has said she would arrange for me to see a different Neuro if I want.
Yes, I was just telling my partner that the 4 days it took me to assemble my trike would have been one day before all these symptoms. Everything takes x4 to get done now. I feel for you having to give up so much of your lifestyle and things you enjoy - I am finding ways to continue with some things but others may just be lost. I haven't been able to play classical guitar since this happened and I don't think the motor control is coming back :-(. We love taking hiking trips through all the National Parks, and I'm not sure if there's a way to continue that if I can't walk straight......don't wanna be in the news like those "selfie" pic folks who walk off cliffs.
It's encouraging to hear that someone who has had to make so many changes is still able to see things positively. Your words are helpful.
Lin
Can't play the guitar either - fingers do not hold down the strings or move right.
A traveling freind of our has two recumbant power assist trikes. He puts them in the back of his pickup truck and uses them where ever they are. Alabama, Texas, New Mexico, Arizona, etc......
We have been and ridden our two wheelers in many National Parks. I wouldn;t let that slow you down. Many, many beautiful bike paths.
Good luck and enjoy your trike.
Scott