Suspected MG, negative tests so far, SFEMG pending
I've been under treatment since a month and a halve
Experienced first symptoms, like fatigue and problems reading things up close after my first covid infection in the beginning of 2022, but attributed all the issues to getting older
In short:
I have had multiple tests which came out negative, I'm on mestinon and am waiting for Single Fiber EMG test
Heat can trigger or worsen my symptoms
Because the tests up until now have come out negative and because when I'm in the hospital I feel well and am not showing the symptoms, I'm afraid the Single Fiber EMG test will also come out negative
It's effecting my daily live and also work, if all the tests are negative I might not know whether my employer will keep on being understanding of my health issues
Long version with background info:
I had extreme double vision after having my second or third covid infection in february
I already experienced double vision occasionally in the last 3-4 years but didn't think much of it because it normally returned to normal
However this time it seemed to come back more frequently and didn't go away in a few hours
I've had the following tests which were Negative
* Bloodtest
* Thymus CT scan
* EMG
My neurologist put me on mestinon when I had an episode and was commited to the ER, this was prior to the EMG test
I did not have breathing issues but was feeling unwell
I normally push through when having issues but this time I felt really off, I called my neurologist and he advised me to check into the ER
That week temperatures were high and my symptoms were really getting worse
Mestinon seemed to help I got a low dosis at first I was given 3x 30mg a day but when the high temperatures continued and I got a list of other symptoms it was increased to 5x a days
I kept a daily report on how I was feeling but because of the list of other symptoms I listed the neurologist told me he's not entirely sure I have MG
He referred me for a Single Fiber EMG test which I'm still waiting on
My frustration is that everytime I go to the hospital for tests I feel reasonably well, they have not seen my droopy eyes or strength loss while I was there
I have told them multiple times that my symptoms can be triggered or worsened by exposure to heat and that my issues can start in the middle or later in the day
My fear is now that when I do get the Single Fiber EMG test it will also come out negative
The past weeks have been tough and I have felt like I was surviving on a daily basis, the higher mestinon dosis has helped but feeling good or bad is still fluctuating throughout the day
My original post was to encourage you, Danny, but I feel like I'm the one getting the boost reading so many people's stories. You're right when you say no two people seem to have the same experience which is why diagnoses are so difficult. I will say this, I grew up on a ranch in a pretty rough part of the country and life has never been easy, so being thought a sissy was the worst epithet someone could tag me with. For three years I felt like the doctors were just inwardly thinking I was a sissy and it made me so mad!!! (You try birthing 14 children and tell me how tough you need to be!) All I wanted was validation and I've never gotten it from anyone except the first neurologist who diagnosed me and now, sadly, has moved away. As difficult as the muscle weakness (sometimes so bad I couldn't lift my arms or chew), droopy eyes, etc. was, the psychological aspects were in many ways worse because I couldn't help but ask myself, "Did I really get so whimpy over the years after all?" Thanks to all of you who have posted; I hope Danny feels better for it. I know I do.
You sound like me. For three years I went from doctor to doctor but no one would take me seriously. They would just blame it on me have so many kids so of course I'd be tired, etc. Finally I was accidentally referred to a neurologist who, after a negative EMG and blood test, diagnosed me with MG anyway. My mother had supranuclear palsy and I remember her neurologist diagnosing her without any high-tech equipment but based on symptoms (which was confirmed by a week-long train of appointments at the Mayo Clinic) which is what my neurologist did. I'd never heard of MG (this was 15 years ago) but when she gave me a handout on it, it was totally on the spot. Let's face it, MG has some pretty weird symptoms. At that time, there were no treatments that really worked, but I learned how to manage it. Just giving a name to my problem was of enormous help because, I hate to say this, but doctors have a tendency to make you feel like you're just a whiner or that you're just 'getting older,' etc. (I was in my early 40s at the time) Two years ago my neurologist moved and I got assigned to another one who doesn't think I have MG. Like you, they don't see the worst of it and they don't live in my body. Also, it is much better than it was 15 years ago when I literally wondered if I'd see my next birthday. I asked the new neurologist, if it's not MG, what is it? That was two years ago and I've never gotten an answer. I quit seeing him altogether. However, I was recently diagnosed with Cushing's Disease due to a tumor on my pituitary gland and will be having brain surgery in a few weeks to remove it, so I'm hopeful that I will get some strength back after that, but while Cushing's Disease does have some of the same symptoms as MG, there are plenty of MG symptoms that I have that don't fall under Cushing's Disease. I think doctors rely far too heavily on technology anymore and they are more willing to accept an answer from a machine than from their own logic functions. I have very little faith in the medical establishment anymore. I know what I feel whether they believe me or not.
I do hope I get lucky with the neurologist who's going to perform the SFEMG test, and if the test does come out negative he's still going to take it seriously and provide me with the proper treatment
Myasthenia doesn't seem a common thing in my country and I think that's why my primary neurologist is doubting that I have myasthenia because he's focusing on the double vision and droopy eye lids, all of my other symptoms don't fit in his diagnosis and therefore he's referred me to a different neurologist with more expertise hopefully it will work out
Wish you best of luck with your upcoming surgery and speedy recovery
Don't be worried about the negative test results. many people get negative results. It is more about the verifiable symptoms that you are going through. I hear constantly about the dropping eye problem but when I was tested 14 years ago because I had the dropping eye my tests were all negative or boarderline which is what I am having now in testing, and they never did any of the best tools for diagnosing this. There is no doubt I have several neurological symptoms that are symtoms of MG but also other neurological diseases. They have ruled out MS Parkinson, Lambert Eaton, Rhabdomyolysis, and Guillain Barre. I have been diagnosed with Fibromyalgia in 1991 and it has stayed consistant. They say you can still have Fibromyalgia and MG also. I am scheduled for Brain EMG August 11th. I have been to the emergency twice in the last month with Breathing issues and very weak, but I was able to walk, but have fallen several times, and unable to walk up a full flight of steps. Over the last weak I have been unable to get myself up from these little falls, my arms are very weak. When I fall it is more like my leg can't support me and I just sit down on my legs at odd positions. I don't get hurt except a bruise or two. For a while I could grab a wall or furniture and keep myself from going down, but now my arms can't stop me and I surely can't pull myself back up. I guess things are advancing.
I have nowhere near as severe symptoms like you're dealing with, I wish you all the best and strength and hope things will turn for the better.
My doubts are still there regarding MG, do I have it or not and will the SFEMG test be positive or not but as you say there are people who have MG without having any of the tests turning out positive.
The medication that I'm currently on does seem to finally take and I'm seeing slight improvements so I'm trying not to worry as much about the upcoming SFEMG test, of course I'm hoping it to be positive to confirm it's MG and I'm not crazy and imagining things.
I have had mg now going on 3 years. At the very last I was so bad that I could not swallow or eat for days I wasn't able to talk and I was unable to lift my arms over 3 inches I just laid in bed and I thought maybe it was a stroke. Has me anybody else come down with mg after they had the vaccination from Colbert I had three covet vaccinations then came down with double vision just a month or so later droopy eyes lids. I was slurring my voice and my arms and legs were hard to move during this period of time I lost 160 lb and you could see my skull through my skin. I also at this time had cancer I had five tumors in my liver they treated with y90 radiation pellets. I was very lucky that I got a liver transplant and it was very hard for me to get into a taxi and get to the hospital for the transplant. The transplant was a breeze and recovery room they took out my breathing tubes and I was unable to breathe so they had to go back in and put the tubes in they went ahead and did the mg test. And it came out positive. But 30-40 minutes after completion of the treatment of I IVIG. I was able to move my arms in 7 days later they removed the breathing tubes and I was able to breathe. Just a question if anybody else came down with mg after taking the vaccine. I'm 73 years old I've been reasonably good health except for the liver cancer. I'm doing great now I take treatment every 6 weeks and they're talking about moving my treatments to every 8 weeks. I hope this works it's uncomfortable with a 7 hour infusion this setting in the chair are leaning back. God bless and hope everybody as better Days you're truly Ray
