I have certainly read that the blood test isn't always conclusive and can vary. In fact, even if positive, it is not an accurate measure of the severity of MG in the individual. Apart from that, I don't really have the experience you're looking for with respect to ocular MG. Yes. like many of us, the initial symptoms were related to muscle weakness in the eyes, but that soon progressed to generalised. Would have thought that most problems with eyesight lead to headaches in one form or another? There are a few on here better placed to relate their journey with MG.

Take care.

Hi, Welcome to the group!
I was 65 when I got MG==started with double vision, then droopy eyelid, and then troubles chewing and within a few weeks problems with my whole body. It can come on fast!
There are several blood tests for MG. You may have had ACHR and MuSK tests to start with. My ACHR was positive and that was the only test I had. Usually they do the ACHR and if that is negative, try the MuSK -- two different types of MG.
Do you have the test results to see what tests you had? Some folks test negative for both and still have MG.

Since MG can come on fast, it is important to push to see the neurologist as soon as possible.
If you tell us more about the tests you took and results, we can give better advice.
Good Luck
Russ

Thanks so much for your reply's. I believe i had the ACHR and the MUSK tests but i am not sure which one came out positive. My doctor is not very forth coming. They just said we can't help you now you have to see the Neuro,which i will call Monday. This past two days i have lowered the lights on my computer and in my house with much improvement in my eyes. The dimmer lights seem to relax my eyes more. I have had no double vision (knock on wood) for almost two days. This after weeks of double vision. I am sure it is not gone and will probably be back. But a good time to do things i need to get done.....Thanks for your information

I spent most of my working career at a hospital/clinic.
We have to remember, that as patients we are paying for a service from the doctor and clinic and things like test results are ours, not theirs, even if they are paid by our insurance. I always insist on a paper copy of every test. Now my clinic puts them on line and I can look at them when I choose. Having the test results lets me look them up and study what they mean so I can better understand what I have.
For those of us with MG, we have to find a good neurologist and get a working relationship with them. To do well with MG, we have to know what we have, what are the treatments, what are the problems etc. Most of the time our doctors don't take the time needed to get us to understand it.
The place to start is to call the office, ask for a copy of the test results, and find out for sure what test is positive and what that means. A blood test that is positive for MG is all that is needed to diagnose it.

Russ

Hello my name is kenneth I have had ocular mg for almost a year it started out with slight headache over my right eye and then when I turn my head to the left or right I would have double vision very briefly and kind of curiously wondering if my glasses needed to be checked to see if I needed a new lens this went on for maybe two weeks and then one afternoon coming back from the dog park I turned my head to the left to check on coming traffic and I had double vision it would not go away had to close one eye to get home it seems that the ocular mg has stayed in my eyes for a year I do experience pain in my hips and knees when I walk and I seem to tire very easy I don't know if I'm having issues swallowing because I had a carotid artery blockage and the surgery left me numb in the throat because they cut a nerve by accident but i did get headaches and it did seem that things were a lot brighter so I'm assuming I did have an issue with brightness I am still in the process with my neurologist of working my medications to a proper dos right now I am taking prednisone 20 mgs every other day it seems to be holding all right but with the prednisone a lot of side effects which I've experienced quite a few. hopefully I will be one of the few that it only stays in the eyes .but I don't think so I feel that it has moved into my body and we'll eventually generalize but keep the good fight and remember neurologist works for you do not be afraid to question any prescriptions or remedies or recommendations he gives you it's important to work with him or her you should be able bee control of this disease it has taken me the better part of a year just to accept the fact that I have mg .stress play a very heavy part and your condition good luck and I hope I have been of some help I feel that I have been very lucky with my mg and there are people here who are in Dire Straits because of the mg they give me the incentive to push on with this disease it seems no matter how bad of a day or week I have there are people here who are suffering terribly everyday not trying to scare you ..you need to research mg for your own benefit and believe me the people here are incredible they are here for you and will guide you as much as they can ..sorry to hear that you were experiencing this disease have a good day and hope I have been a little helpful for you

Thanks for your replys Kenneth and RHanson........every bit of info i can get helps. I used to work in the medical field and would of gone on but stopped to have a family. I understand quite a bit and know what questions to ask, and i will for sure. As i think back i remember some odd things that have happened over the years health wise that were never diagnosed. One was a swallowing problem with chest pain and the other i could only open my mouth half way. Both problems stopped and the only answer i got was Nutcracker Esophagus, (not the clinical name) but it is a swallowing disorder. The jaw deal just went away.. I ma really so happy to have found this group. Only ones with mg really know how it feels and how to cope.....

I was diagnosed in August with ocular MG
Symptoms started mid May !
Went to Kansas City Medical Center to Neurologist recommended having my Thymus gland removed !
Back home from surgery recovering!
We are praying this will help and put the MG in remission