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...
Hey guys! I stumbled upon this site looking for a few answers. I was wondering what were the first symptoms everyone experienced and ones that led you to seek medical attention?
Did anyone's symptoms start of more on the mild side where you wouldn't suspect MG?
I'm a 24 year old female. About six months ago, I start experiencing a crazy slew of symptoms. Nearly passed out at work one day when I got dizzy and my legs gave out on me. Started having a lot of other symptoms that aren't very pertinent to a MG diagnosis. BUT one day in September of last year, I started having crazy vision problems.
I've always had great vision and have never needed glasses. But I noticed my vision getting blurry very quick, and then after a week or so one day it went to complete doubled vision. I was having some facial pain, numbness/tingling, and weakness and my eye doctor suggested I go to the ER.
They checked me for a stroke and things of that nature and said they couldn't find anything. But my vision was still terrible. The next day I had an MRI where they found a rare symptomatic pineal gland cystic tumor in the center of my brain. This was thankfully benign, but was pressing on vital areas of the brain and had to be removed.
I was sent on a long journey seeing neurologists and neurosurgeons and about 7 weeks ago I had surgedy to remove this. While surgery has cleared up some of my symptoms, my vision is still very much off.
I do realize I still have some healing and recovery to go through from my brain surgery. But, if the cystic tumor was all that was causing my eye problems it should be improving by now...instead at times it seems to be getting worse.
All of this to say, one of the neurologists I saw before my brain surgery was convinced that my vision and fatigue were not caused by the tumor, but instead he was convinced it was Myasthenia Gravis. He said both of my eyes looked droopy and after doing some neuro exams wanted me to go have the blood test done at a local hospital...and then a muscle test at a larger hospital about 4 hours away. I didn't particliarly care for this neuro and was convinced that MG was something that I would definitely know I have because I would start having extreme muscle weakness. But I didn't realize that it could present in different ways.
I know I still need to give my recovery some time, but now I'm curious as to if this may be something to check in to. I recently get so fatigued. Even showering and washing my hair wears me out! I've noticed things like not being able to hold my arms up or over my head for hardly any time at all without getting so fatigued I feel like I need to sit down. My heart will start racing and I just need to sit down. I've also noticed a few episodes of my jaws feeling tired like I can't chew anymore. It's only happened a few times recently. But I never paid any attention to it. I've always been in pretty good shape up until these last 6 months I've had to take medical leave from my job as a Labor and Delivery Registered Nurse.
I'm just starting to wonder if my vision and these other things may be more related to a different condition that what I was just treated for. I'm young, and in the last few years I've gotten married, graduated college, bought our first home, and ready to start a family. I'm just ready to start feeling better and living life!
Thanks for your advice! Sorry this was so long!
Kasee
Did anyone's symptoms start of more on the mild side where you wouldn't suspect MG?
I'm a 24 year old female. About six months ago, I start experiencing a crazy slew of symptoms. Nearly passed out at work one day when I got dizzy and my legs gave out on me. Started having a lot of other symptoms that aren't very pertinent to a MG diagnosis. BUT one day in September of last year, I started having crazy vision problems.
I've always had great vision and have never needed glasses. But I noticed my vision getting blurry very quick, and then after a week or so one day it went to complete doubled vision. I was having some facial pain, numbness/tingling, and weakness and my eye doctor suggested I go to the ER.
They checked me for a stroke and things of that nature and said they couldn't find anything. But my vision was still terrible. The next day I had an MRI where they found a rare symptomatic pineal gland cystic tumor in the center of my brain. This was thankfully benign, but was pressing on vital areas of the brain and had to be removed.
I was sent on a long journey seeing neurologists and neurosurgeons and about 7 weeks ago I had surgedy to remove this. While surgery has cleared up some of my symptoms, my vision is still very much off.
I do realize I still have some healing and recovery to go through from my brain surgery. But, if the cystic tumor was all that was causing my eye problems it should be improving by now...instead at times it seems to be getting worse.
All of this to say, one of the neurologists I saw before my brain surgery was convinced that my vision and fatigue were not caused by the tumor, but instead he was convinced it was Myasthenia Gravis. He said both of my eyes looked droopy and after doing some neuro exams wanted me to go have the blood test done at a local hospital...and then a muscle test at a larger hospital about 4 hours away. I didn't particliarly care for this neuro and was convinced that MG was something that I would definitely know I have because I would start having extreme muscle weakness. But I didn't realize that it could present in different ways.
I know I still need to give my recovery some time, but now I'm curious as to if this may be something to check in to. I recently get so fatigued. Even showering and washing my hair wears me out! I've noticed things like not being able to hold my arms up or over my head for hardly any time at all without getting so fatigued I feel like I need to sit down. My heart will start racing and I just need to sit down. I've also noticed a few episodes of my jaws feeling tired like I can't chew anymore. It's only happened a few times recently. But I never paid any attention to it. I've always been in pretty good shape up until these last 6 months I've had to take medical leave from my job as a Labor and Delivery Registered Nurse.
I'm just starting to wonder if my vision and these other things may be more related to a different condition that what I was just treated for. I'm young, and in the last few years I've gotten married, graduated college, bought our first home, and ready to start a family. I'm just ready to start feeling better and living life!
Thanks for your advice! Sorry this was so long!
Kasee
As for the vision, it's also part of the symptoms for MG. What happened to me was I would get double vision, then I would rest my eyes for a while and they'd be okay again, but only for a short while.
I suggest talking to your neuro and maybe scheduling some tests (EMG, CT Scan). The quicker you are diagnosed the quicker you can be treated :)
Wishing you the best of luck!
Megan
Yes, there are blood tests, that can be used to help diagnose MG.
One is called AChR, the other is called MuSK.
These may be the blood tests that your Neuro was talking about.
They are not always a help with diagnosis, but talk to the Neuro.
(I had to have biopsies, but that may not be true in all cases.)
After brain surgery? A biopsy - is nothing!
Sometimes, a Neuro will try a test dose of Mestinon, which may also help with diagnosis, on the eyes. So soon after major surgery, you want to be very careful, and so do the doctors.
Right, maybe you are still recovering from the surgery, that's good to realize. It's hard to be patient, but hang in there! Ross
I work in a Neurology office (not neurosurgery) and we see lots of pts s/p brain surgery so I have a pretty firm grasp of the recovery period your are still facing.
As for your other symptoms, I think they sound very familiar. For a long time I would pass out every time I got in the shower. I would just feel so horrible and weak that my body just crumbled. My husband had to start drying my hair for me too since my arms were too weak to hold the hairdryer up. I was dealing with blurry and double vision and was unable to perform some of my work duties due to the vision and other areas of weakness. I started to notice that if I kneel down I couldn't pick myself up again, even if I used my arms to help push me up. I felt like a weak rag-doll. Everything caused SOB, diaphoresis or total physical shut down.
Since you're a RN you will understand the following issues...
If I had to draw blood on a really old person with veins the size of the average capillary I could hardly stand long enough to complete to process. Not to mention that I had difficulty with bending at the knees and bending over to have a better vantage point to complete the stick. The same conditions were present when doing patient vitals or even something as simple as turning over an exam room (sanitizing exam tables and instruments, restocking rooms, or just standing long enough to assist in an I&D or bx procedure, etc)
If it were me, I would get an appt to see the doctor who suspected MG and request some additional studies to firm up the diagnosis.
Good luck to you and please keep us posted on your progress.
Angie
A question about those with the double vision...what was the characteristic of your double vision? Was it only with both eyes open? Did it go away when you covered one particular eye or was it still there?
I did get glasses and do find that those help, but still am experiencing doubled vision with my glasses mainly later in the evening, when I'm tired or after I've been watching tv or looking at screens. I'm not sure if this is relevant at all to MG?
Also, are you experiencing difficulty in lifting your eyes? Like looking upwards or sideways without moving your head is really hard?
Do you take Mestinon? If Mestinon is effective at controlling the MG that would be another positive test to confirm MG.
Please keep us all up to date on your results!
I had droopy eye lid and vision problems. My eye doc diagnosed me.
Screen time as well as driving or even riding gave me problems because the visual stimulation of a car is a lot. There were days I had to sit in dark room unable to even read.
Yes you want it confirmed early before you get worse.
The problem for us is...we don't bounce back easily if we head downhill.
Your general doc can prescribe mestinon which might give you some relief until you get your diagnosis.
Sorry to say...you need diagnosis and treatment fast. We can head downhill faster than we would ever want.
So for now, he told me to contact my GP and set up a blood test for MG. He warned me that these are not always accurate and that after that I may want to look into further testing for a more definitive answer. He said when I notice my eyes getting tired to just rest and to stay positive. So we will see! I have to see what my insurance situation is...but I definitely think it's worth getting the tests just to be safe!
Thanks for the update also. Did you happen to see a neuro-opthomologist? I'm just curious about this because I've talked to people who have seen both and many neuro-opthomologist are the ones that catch MG. We get tons of referrals from them for MG evaluation. However, we get very few from regular opthomologist and I know that they are highly trained to pick up on the subtleties of MG.
I hope that you are able to get some of the tests that mentioned but don't be alarmed if they all come back negative. There is so much research that still needs to be done in the MG world and they know that there are more antibodies than the ones that they currently have. The only issues is that they haven't developed a test to screen for it just yet.
Please keep us posted and good luck to you.