Originally Posted by Stellatum

Mrs. C,

I got Graves' disease 16 years ago, after the complicated birth of my daughter. I have been on and off thyroid suppressants ever since (I never had my thyroid radiated). Three years ago last spring, I went hyper again, after several years of being normal without the drugs. I went back on the suppressants. Then several months after that, I got my first MG symptoms, after I took care of five of my kids with the swine flu for three weeks but never got sick myself.

When I had Graves' disease, it took a while to diagnose. At the time I remember just one symptom of muscle weakness: I had trouble standing up again after kneeling down before entering the pew at church. When I got MG, the muscle weakness was much, much more severe. The first symptom I noticed was that my legs got so weak I collapsed to the floor quite suddenly when I was just standing there talking. MG affects my legs, arms and hands, trunk and back muscles, neck, and swallowing and occasionally my eyes.

My antibody blood test for MG came out negative three times. I also tested negative for MuSK and LEMS antibodies (you should be tested for those, too!). Then I tested borderline twice on a single fiber EMG. This is not the same as a regular EMG. In a single fiber EMG, the doctor inserts a thin needle and leaves it there for several minutes while he asks you to gently clench the muscle. Then my neuro sent me to an extra-special-specialist--a neurologist with a special expertise in MG. I had to travel. This doctor did his own SFEMG and said it was strongly positive.

If you know what it feels like to be hyperthyroid, and you don't feel like that now, it's pretty good evidence that you're not hyperthyroid, or at least not severely. Can't they just test the levels of T3 in your blood?

I hope you can get to a doctor who specializes in MG. Getting diagnosed with MG, especially if you don't test positive for the antibodies, takes a lot of persistence. Please know that MG is nothing to fool around with. If you can't swallow or have trouble breathing, that's a medical emergency.

Abby

Originally Posted by RavenC

Hi there,
Well..for me my weakness caused by other diseases (ra, thyroid, cancer, heartproblems and so on) was just a different weakness from the mg one. It is like I finally know the feeling of true muscle weakness and muscle fatigue. The other ones gave (give) me more an overall weakness. Like tired-weakness, kind of breakdown weakness.
And MG gives me more, "wtf I can't even chew on this cookie / turn on the page / climb the stairs / breath in weakness. Real muscle weakness, you know: your head to heavy to lift your neck, or a face with no expression.

A doc who is neurologist and endo at the same time? Sounds cool
Nah, I just have a whole bunch of docs, I believe in 3 years Ive seen over 30 specialist probably more.
Well, my thyroid was okay till few weeks ago, my blood says Im hypo again.

Ha, well, how they untangled it? Well, with the first 3 or 4 diseases they just said you are tired / crazy / stressed (the usual). Until they did (after weeks MG even months of begging, because I felt something was wrong) simple lungfunctiontests or bloodtests and i was rushed to the hospital.

It is very MG typical to have weakness one hour, the next hour (when you have your appointment) it is gone! I never experienced this with other weaknesses, so maybe thats useful?

Good luck!

Originally Posted by MrsCosh

Thank you Abby for telling me this.
My muscle weakness is just how you described - being unable to get up, collapsing suddenly! Although it is better this week now it is cooler and I am not doing anything!

I might be having the single fibre EMG in late november but I rang the hospital and they said they don't know what tests I'll have. What muscles did they test when they did yours?

My TSH is suppressed and my T4 very low and my T3 a bit high - but it was low a few months ago. When it was low the endo said it was only a reflection of when I had last taken my dose (which was the night before). He then said he would not bother testing TSH etc again. Of course he did test and I had taken a T3 dose about 1hr before the blood test - hence my higher result (just over top of the range - 7.9 rather than 7). I have tried several times to cut back on my hypoT meds in order to get some response from my TSH, but nothing happens and I get pretty unwell with hypoT symptoms - I end up with practically zero TSH, T3 and T4. Hence the decision not to test...
I end up feeling like the naughty girl who takes too much medicine!

Thanks again for your help,

MrsC