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
I really do hope that the SFEMG test turns out positive to be able to move forward, being able to give it a place in my life, get proper treatment but also to be able to say to people at work or around me what I have, to hopefully receive some understanding.
Recently I had to take sick leave because I had some bad days and talked with HR, they didn't seem to understand my situation and they think I have anxiety and depression which are causing my symptoms.
They told me a hypothetical story about a person with similar issues and that anti depressant medication helped that person out.
I talked to my neurologist and since this week my medication has been upped to 5x 60mg mestinon a day, I do feel some improvement but also feel that my body still needs time to adjust.
Luckily the SFEMG test has finally been scheduled, although still 2,5 months away.
I've been doing a lot of research and listening to patients stories on youtube, I often can relate to their symptoms and experiences but not all, so I agree it seems everyone's experience is unique and a little bit different.
Thank you all for your replies it helps coping with the whole situation and I hope everyone the best on their own journey.Sorry to hear you're going through the same experience getting diagnosed.. I'm seronegative gMG with primarily respiratory & bulbar symptoms. It took over 30 years to figure out what was wrong with me. I deferred the SFEMG and, instead, 2 years ago began IVIG treatment. On June 9th, I finally had the SFEMG - It definitively diagnosed myasthenia gravis..
Hang in there- I totally understand the frustration getting back test results that are negative when you so want a diagnosis l. The SFEMG will give you the information you need. I hope you get some closure. You're not alone.I believe when I got the flu shot and the covid shot together as directed by the pharmacist is when my journey began. Started with the droopy eye,double vision and muscle weakness. I have tested negative for all antibodies but do have a jitter result. Waiting for SMEg testing in October. Was put on immunotherapy which helped and now do SCIg treatments weekly.
I am triple negative gMG. My Single Fiber EMG was positive. I have all the classic signs of gMG except for insensitivity to heat (good thing as I live in Florida). It seems to me you probably have gMG and I hope the single fiber gives you peace of mind to have a diagnosis and you can get started on advanced therapy to treat and hopefully keep your symptoms under control. I truly empathize with you and hope the best for you.
