The link isn't working for me. Can you give us more details so we can search for it? I was just having a conversation with an MG person today - we are both on only Mestinon and wonder if we have a different kind of MG than others with more severe disease.
Flutebell

Just double checked it's emedicine.medscape. hope that's better -I'm not a techie in any fashion sorry.as hubby says you talk and leave out half of sentences sometimes I say I'm just talking like people who've been married for 40 + yrs!!!!

The link should be .com, not .come

It is not an indication of different kinds or forms of MG. Instead, it is a scale for medical personnel to grade the severity of how MG is affecting an individual.

Flutebell, have you and the other MGer both been tested for MuSK antibodies and LRP4 antibodies? My understanding is that as research uncovers new antibodies that cause MG, researchers are gaining more understanding about what all of us have always known, i.e., that MG is manifested differently in all of us. If you have MuSK or LRP4 antibodies, your disease will respond to certain meds differently than they will for someone who whose MG is not a result of those antibodies. Your symptoms may be different or more severe than for others. Essentially, research is showing that one reason MG looks so different in patients is due to which antibodies are attacking the patient's body. Research continues to uncover additional antibodies that cause the body to have MG symptoms. No doubt, as further antibodies are identified, we will gain further understanding why each of us responds differently. Hope this helps.

Sorry mg eyes and tablet that adds letters arent a Good fit sorry

I've seen the scale system - I have generalized, not ocular so am pretty far down the list.

LadyLife, I've been tested for MuSK and LEMS, but not LRP4. It took 49 weeks and many hoops just to get the tests I did get. The neuro who discharged me and said I didn't have MG (because I got worse in the cold) had earlier said that there are probably 100 antibodies that cause MG and we can only test for a few.

I likely have one that messes up the calcium functioning of the nerve/muscles junction as I get quite ill when my blood calcium (normally quite tightly regulated, even in folks with osteoporosis) is low. That was the only time I ever had a droopy eyelid!

So I just have to stay alive and keep things under careful control until my antibody is discovered! Fortunately I've never had a crisis - just a few scares with low potassium or low Vitamin D. I'm just glad that I can buy the things I need to stay alive from a pharmacy. Those pills plus Mestinon give me a pretty good quality of life, for now.

Flutebell