Hi. Welcome to the group. Sorry to hear you are having problems. It is hard to diagnose MG from symptoms only as there are many conditions that have similar ones. That is why the doctors do so many tests.

Most of us with MG have had symptoms for months or even years before we are diagnosed. In my case, I had problems but until I started having double vision a few hours after I awoke, and one eyelid wouldn't stay open (classic symptoms), the doctors didn't think to test me for MG. My first test was the "icepack" test for the droopy eyelid. When it was drooping badly, the doctor put an icepack on the eye for a few minutes and then the drooping went away for a while, then a positive blood test.

MG has different symptoms for different people, but most of the time we think of it as volunteer muscles that work, but tire very quickly. And sometimes that turns in to chronic muscle pains as the muscles to hold up our head or arms or legs tire and then hurt.

For most of us, there is a medicine that gives almost immediate relief, Mestinon (pyridostigmine). We take a pill (60mg or so) and in 1/2 hour we are much better. It lasts for about 3-4 hours and then wears off. Sometimes doctors try us on that to see if it helps, and if it does, it is much more likely we have MG. However, it doesn't work for everyone.
You might ask your doctor to try a few of these to see if they help.
Most of the time, my symptoms got worse as the day went on, early morning best, and late afternoon worst. After I started getting treatment (Mestinon for immediate help, and prednisone to stop my immune system from making bad antibodies), I started feeling normal again. Most folks have to take ongoing immune system treatment if they have MG, but that makes life become very good again for most of us.
Hope the doctors figure out what is wrong soon!
Good Luck, Russ

Thank you so much for your reply. I wonder .... with the droopy eye , is it droopy no matter what direction you look in? Or only in certain position?
My droopy eye only happens when I'm laid down or looking down x

When I had a droop eyelid, it was droopy no matter which way I looked, or what I did. I could sort of force it open by trying hard for maybe 20 seconds, but then it would droop down. As I had double vision too, I sometimes patched one eye. After the second month, I found it was easiest to just let one eye go shut like it wanted too and use the other eye to see with. Sometimes I switched eyes. I could see even with the droop.
My double vision went away if I tilted my head way back and looked out of the bottom of my eyes. So when I was driving with one eye closed, and came to an intersection or other place where I felt I needed two eyes, I tilted my head way back and got normal vision. I think about 4 months after I got on prednisone, my muscle receptors grew back (the prednisone stopped the antibody attacks), and I got back normal vision. It was one of the most annoying parts of MG, because even if I was sitting and resting, it still was a problem.
Good Luck
Russ

That's interesting and I say that because I don't get droopy eyelids or double vision regardless , it's only when I look down or I'm laid down: I'm starting to think it's something more sinister: my first MG test for atibodies came back fine, I've recently done is it the MUsK test??? I'm awaiting results. I do have neck ache and upper shoulder tiredness. But I don't know why but the more people tell me about their MG symptoms mine just don't fall into the disease: I never get eye droop towards end of day or double vision. It's every morning for 9 month and sunlight.

I'm so confused 2 neurologists, 4 gps, 2 opthmologists , a opthmologist technition , MRI scan and still no further forward :-(

Hi, I have had the same experience with Ocular MG that Rhanson has described. I have had Ocular MG for 40 years now. I really appreciate Rhanson taking the time to detail his experience because it summed up my 40 years dealing with a drooping eye lid, double vision, weak next muscles, driving with one eye lid shut, tilting my head way back to look down and have some form of good vision to drive. I really emphasize that you try 60mg of Mestinon. If it works, you have Ocular MG. If it doesn't, then you do not. Also, prednison really was key in achieving remission for me. Keep us up to date, but push hard for a trial prescription of Mestinon.

Hanson and Steve Bert I can't thank you enough for taking the time to reply. Sometimes hearing anything from anyone regarding MG is calming. I am so tired of waiting and tests and blood work but o guess that is needed to find out logically.

Hi,

I had exactly the same symptoms.

It started with vision. I was finding it difficult to drive. I was not able to judge the separation between 2 objects in front of me, and I started to see them overlapping. If I look down at my feet I found them closer or one on the other. With an ophthalmologist consultation I came to know that I'm having double vision / diplopia. And everything is fine of I close any one eye. Then started the long journey to find the cause as diplopia can happen because of many reasons and I had no other symptoms. As in your case, I had the maximum error when I look down and the minimum in the upward gaze.

I underwent many tests like Brain MRI, MRV, Chest CT scan, Many blood tests, Spinal Fluid Study, Nerve conduction study etc and all of them were negative.

That's when I started getting neck and shoulder fatigue like you. My doctor said its because of overthinking and prescribed me anxiety relief tablets. I couldn't accept it and I met another doctor who is an expert in Neuromuscular disorders.

Its her who diagnosed me with Myasthenia Gravis. I have the Antibody LRP4 tested postive (AChR and Anti MuSK were negative) and an enlarged thymus, with other symptoms aligned with MG. With medicines I don't have any fatigue issues now, but my vision is yet to get better. I'm still on prednisolone hoping to get my double vision corrected soon.

And I have double vision from morning. But its gets worse than what it is in the morning towards afternoon / evening. So AFAIK if you have varying double vision MG should be the cause. I would suggest you to keep a check on the intensity of your double vision and then discuss it with your doctor.

Hope this helps.

Sachin89 wow so very similar. I was also told many manybtime my other symptoms I neck and fatigue are psychosomatic and unrelated and all in my head. I also was insulted! When I do my hair in the mirror (because I look up down etc that's the only other time I get double vision.

Your story is so similar to mine: I've had the antibody test it came back negative I'm waiting for MUsk test I was told three weeks for results . Only other disease I can think of if not MG is fibromyalgia

I started with severe muscle pain & weakness for years & then both of my eye-lids got so droopy I went blind because they drooped almost completely shut. I was diagnosed with MG shortly after this happened (it all started in Feb. of this year with my droopy eye-lids) & they put me on mestinon which helped straight away, but the pill made me so sick, I had to quit taking it. My eye-lids drooped any position I was in & VERY blurry vision, even now. I would say I have had MG over 20+ years, it just took them this long to diagnose it. It is (at least for me) a very hard disease to diagnose. They thought I had all sorts of different things wrong & I still think I may have other problems besides this yet. Does any-one else have severe arthritis with their MG?? Well, I hope you get help quicker then I did.

Hi sapira I'm so fortunate to read your story. I don't have arthritis but I do have psoriosis which exploaded when my symptoms started. Previous to that I was on methatrexate for 8 years and I think this may have masked my MG symptoms if that's the cause of my eye issue. I only have problems in my left eye