MG is a difficult dx to make, so I would assume your doctor had a pretty good reason for giving you an actual dx for it. With that being said, MG also does not follow any set pattern. Mine actually started with difficulty swallowing and losing my voice and has steadily progressed from there, hopefully yours won't. I have a friend that has MG and his never progressed beyond swallowing difficulties.

I felt exactly the same way as you do and so went for a second opinion at a University Hospital with an MG clinic. MG was confirmed there.

It never hurts to get your blood counts and keep them on file. Over the years I have had to point out one or two things to doctors who either didn't see the results [I suspect they were filed before the doctor saw them] or they just skimmed over them and missed it. One was a bacterial infection that nobody caught until I pointed it out to them and I was then hospitalized for 5 days to get rid of it.

Sorry for rambling, hope you do well, and sorry you have this problem. God bless.

You should ask the neurologist all of these questions!

You can find out the test values by just calling the doctor's office or dropping in and asking for a printout (or if your clinic is online, look them up yourself). Remember, you or your insurance paid for them, not the doctor, and they are your property too. Always ask for the printout so you can take it home and research it. All of the places I know of nowadays do this for you automatically.

If your testing is like most of ours, there are actually three tests that may have been performed on the blood to confirm MG. When you have the lab report, you can use the internet to find out what they mean.

MG is treated when it causes problems for the patient, not based on the tests. We are evaluated on how well we are doing rather than on numbers on the achr test. I asked my neuro for a followup test to see how well I was doing and she said that it was not useful for that -- just to show I had it or not. What she used to determine the treatment success or failure was my own description of how I was doing and a few strength tests.

There are some studies that seem to show that severity of MG may be related to test levels, but we know that some folks are negative on the tests and still have severe MG. So, if you are getting along OK without medication and with tolerable symptoms, I would just be happy but at the same time be vigilant for worsening symptoms.

Good Luck!

I have been told, repeatedly, that the numeric value of the blood tests are not related to the severity of MG. My numbers are off the roof high, and increasing each year, yet have had no defined MG symptoms since 2-3 weeks after my transsternal thymectomy in 2011.

I second what wbdolphin says. I have also been told that the result values have no correlation to the severity of the disease. The only thing that I could share that was interesting is that we have one patient in our clinic that tested positive for blocking, binding and modulating antibodies and she isn't doing well. Her case if very difficult to manage. Her MuSK results were negative though. We have a couple of patient's that have family members with MG and their cases seem to be a bid more difficult to treat as well. I believe that we have at least one other patient that tested positive for 2 antibodies and they face the same issues as previously mentioned. I think that a positive result is all that is really looked at to come to a diagnosis. That might change at some point in the future but for now scientist still don't understand how to determine the severity of ones disease state. The fact that it is so hard to diagnose the disease in the first place really works against patients. There are likely many other MG antibodies that have not been discovered yet. That probably explains the rather high number of sero-negative patients. I hope there are many discoveries in the near future to make this diagnosis more understood and researched. Good luck at your appointment in September.

I became ill in 11/2012. After several different neurologists I found the one who is currently treating me. One the 1st visit she thought I had MG but needed to rule other diseases. In June after a muscle biopsy and many other tests she made MG official. I still was not convinced and in November went to the MG clinic at Yale New Haven in Connecticut. They agreed with the diagnosis. I still have not found a treatment that works long term. I still at times don't think the diagnosis is correct. I read an MG article that it hits its worst level in the 2nd-3rd year. Im in that period now. It's a rotten illness. The best thing you can do is take it seriously and constantly ask your doctor why. My neuro knows that I question everything so she now explains every change to me in detail. Good luck and welcome to a club that you never wanted to join.

Thanks for all the prompt replies. I guess I was feeling that way as the symptoms of slurred speech and difficulty swallowing are so random. I can only hope that if this is the worst that it gets that I can
manage to live with it. Worst part for me is the embarrassment when I sound like a blabbering idiot. :)