You can have MG with negatives tests, including EMG. I can't remember if you tried Mestinon. Before having any surgery, I'd want to see if that test pointed you in the direction of MG. My 2 cents, which is probably only worth that. Good luck!

I would agree with Elinora that before surgery I would try Mestinon. It is quick, effective, and safe. When dx'd, I had negative test results on everything, but the Mestinon changed my life overnight. After all these years, tests have confirmed the MG. I'm not a medical doctor, and don't pretend to be one, but a trial of Mestinon would only take a few days to give a pretty clear indication. [My trial was 30mg every 4 hours around the clock.]

Hope you find some answers very soon. Our best to you.

People with MG have certainly had surgery for ptosis unnecessarily.

Sadly, there is no reason why someone with MG couldn't also have thoracic outlet syndrome; but I am so glad you have some explanation for your pain.

Please keep us informed as your testing proceeds. Also you might want to take a look at the article Rosie found that is in the Links Group under overview of MG. Too many doctors are trying to rule MG out, the author is discussing the clinical findings (as opposed to testing ) which points toward MG. EMGs and blood tests can support the diagnosis, but when negative do not rule out MG, nor do they make MG less likely for an individual, just a population of individuals. We either have it or don't. I would always prefer not to have it; on the other hand, I wish it hadn't been missed for so many years. b.

These darn MD with their diagnoses...I am others have had to diagnose ourselves several times over.

Thanks for sharing. I learned something new today. I wasn't familiar with TOS.

It seems with Carpal Tunnel, this would not be uncommon.

If you have tested negative for MG, Mestinon being ineffective should ease your mind about MG I would think. In a perfect world, a neurologist would give you mestinon to try and should order a CT scan of your thymus also.

Great advice by the people here.

Thank you for your insight! I never tried Mestonin. My GP wants me to go to another rheumatologist for a second opinion. She thinks something rheumatological is going on, and my rheumy says no! He says that most of my issues stem from having rheumatic fever as a child ( this he surmised by my joint problems). Maybe after a second opinion, she'll try me on Mestonin ? Thanks for the advice!

Doctor #1 once suggested to me - that my ptosis could be corrected, by surgery.
I mentioned this to Doctor #2, a few days later.
Doctor #2's comment, about fixing my ptosis with surgery?
''Run away - as fast as you can - from anyone suggesting surgery like that! You do not fix a neurological problem like that - with surgery! An actual physical problem, or maybe an injury - yes.''
''Neurological problems - NO''
It turned out, in my case? Doctor #2 was exactly correct. - Ross

Like Elinora, I am going to give my two cents so here it goes.

You have the right to ask for "reasonable" measures before incurring large expenses. The cost of a prescription for mestinon will be a lot less costly than a second opinion. Even if you just have a copay for the consult it will save your insurance company hundreds of dollars.

If it were me, I would tell the doctor (either neuro or PCP) that I'm not willing to go through any more tests or consults and I want to give mestinon a try. Perhaps you can approach it from a cost perspective. Let them know that you've spent a ton of money on tests and office visits and you've done your research. Tell them what you would like to do and explain why you feel it is a reasonable request. If they decline to humor you then ask the rheumy to help. The rheumy may be willing to give it a shot since he believes that it isn't a rheumo issue. Any doctor can prescribe mestinon but if they are weary about doing so suggest starting at a lower dose for 7-10 days. Let them know that you will keep a journal of your daily activities and notes about how you felt through the day, as well as any side effects you may have. etc.

Is your neuro a neuromuscular specialist or general neuro? As others mentioned, many general neuro try to rule OUT MG instead of ruling it in. Some doctors will run test after test to come to a diagnosis even if it doesn't answer all of the symptoms or issues. (It is also possible if not likely that you have multiple things going on concurrently.) We have to be vocal about our limits in terms of what we are willing to endure to do the same.

Let your doctors know that you have done everything that they recommended to this point and you want to try this one thing. If they know anything at all about MG they should be able to see this as a quick way and easy way to "rule it out". Mestinon does not work for those without MG so if you feel no different then you can look at a second opinion. I would also ask the doctor what their plan will be if the mestinon works and improves your symptoms. If they aren't willing to accept that it is MG then I would run very fast to a new doctor. You don't want a close minded doctor for any of your healthcare needs but most certainly not with a situation as complicated as MG.

I do hope that you find the answers that you are looking for. Just remember to be the best advocate for yourself as you possibly can. Good luck to you and please keep us posted.

Angie

Three years ago I started with double vision and ptosis. Repeated blood tests and a double fiber EMG all came back negative. But because I responded immediately to an IV of mestinon in the Neurologist's office he was convinced I had MG. After waiting 6 months I was finally able to get a single fiber EMG, which he said would be the best test, and I tested positive for MG. He then put me on regular doses of mestinon and that helped until recently.

I would check into a single fiber EMG or look for more feedback here about it. It was definitive for me.

When our daughter was born and I carried her around I developed back pain and right arm tingling and numbness. It was severe and aggravated by many of the tasks a young parent encurs daily. The back pain was so sensetive if I sat down in a chair with a high back it aggravated the pain and numbness. I could not stand for anyone to touch my back. Traction was tried and muscle relaxers but it persisted. A rheumatologsit felt strongly it was thoracic outlet syndrome. He had me see an occupational therapist who told me not to bend my neck up or reach above shoulder level. I had to rearrange kitchen cupboards etc and the doctor told me until my daughter could crawl to me instead of me picking her up I would have major problems. Thank goodness after our daughter was not so young and needing constant lifting and carrying I did improve and it finally got a lot better.

Ironically when I first had arm weakness in the past three years my first thought was thoracic syndrome. But I saw differences. This was worse the longer I did something like have my arms in the driving position...plus it effected both arms. Still because of the history I had several tests trying to rule out thoracic outlet syndrome and wasted a lot of time. One neurologist did a five minute series of tests on me and said I did not have it now. Of course the first course of mestinon was the real test. Once at full dose I had an amazing change in weaknss.

Of course someone could have both. I am just saying while weakness is apparent in both they are different and a good neurologist should be able to differentiate. I never had my face affected by the first problem but at it's worst I did develop some foot drop. Marie