[Stellatum]

We are moving forward! My doctor is willing to treat me!!! Hooray! Here's what we decided together:

1) test for the AChR antibodies again (the third time!)

2) lactate test just in case (my serum CK is normal)

3) no more SFEMGs, because the last one was already abnormal and another abnormal wouldn't add to our knowledge (last time he spoke as if "sliglhtly abnormal" didn't really count; this time it was more like "abnormal is abnormal")

4) if the AChR is still negative, a referral to either NY or Boston--he's going to look into it and recommend one

5) Mayo if I want in the future, to consider congenital myasthenic syndromes (but I decided to wait on that--Boston and NY are day-trips for me)

6) Imuran is a possibility for the future (we decided to wait on that for now)

7) plasmapheresis is a possibility for the future (we decided that since my home situation is good--I am able to do what I need to here--that we will not do that unless I get worse, or unless we don't make any progress by going to Boston or NY)

At this point, I think I would like some evidence that this is an autoimmune disease before starting Imuran. I think that if we can't find that evidence, and I continue to get worse or don't get better, and if the people in NY and Boston aren't able to help, I will ask for the plasmapheresis. If it makes a dramatic difference, I will go on the Imuran.

All in all, I was so relieved to be taken seriously (he didn't utter those terrible words, "depression" or "stress"). He discussed all these options and we came to these decisions together. So, I'm still sick, but I'm no longer so discouraged.

Thanks, everyone, for all your support, and for all I've learned from you here.

Abby

[DesertFlower]

Wonderful news! I am happy for you.

[art chick]

So happy that your doctor has come around Abby and great job hanging in there and helping him help you!

debra

[Annie59]

Abby, this is great news. You were one of the first people I read about here. You so deserve this clarity.

Annie59

[Stellatum]

Thanks, everyone. I think what happened was last time he saw me during a good period. This time I came in with stories: how many times I hit the floor; how I needed my 12-year-old to get me to the car after the library; how I had to rest my arms between spoonfuls of soup; how I lean against a wall to rest and get stuck. Very specific things.

Last time my doctor agreed to test me a second time for AChR antibodies, and he said, "I just had a patient who tested negative and then positive." This time he agreed to test me a third time, and he said, "I just had a patient who tested negative twice, and then positive." I have some hope they'll find the antibodies this time...

Abby

[Annie59]

Abby, Please tell me how the blood test goes. My neuro said no another test but as of this last talk with my lung doc he said he sees no reason not to do it again. I am sure my neuro will disagree but he can have the new neuro who he knows do it stead so he doesnt have to go up against the old neuro.

They forget we are human and this is a rare disease that in some respects is in its infancy with testing. When I read that the musk was developed as recently as it was I knew that there is much to be learned yet on this disease and why is my doc so rigid.

Annie59

[Stellatum]

Originally Posted by Annie59

They forget we are human and this is a rare disease that in some respects is in its infancy with testing. When I read that the musk was developed as recently as it was I knew that there is much to be learned yet on this disease and why is my doc so rigid.

Right. The process by which the nerves communicate with the muscles is unbelievably complicated. They've found three antibodies--MuSK, AChR and the LEMS one--so far. They all attack different parts of the process, right? Actually I'm not sure about that. But it wouldn't be surprising if there are other antibodies they just haven't discovered yet, right?

My doctor says that if the plasmapheresis (if I have it--that's not decided yet) makes a radical difference, that's good evidence that my disease is autoimmune. Then it can be treated with immunosuppressants. That makes a lot of sense to me. There are also congenital myasthenic symptoms (lack of acetylcholine, lack of receptor cells) that cause the same symptoms of MG, but since the cause isn't antibodies, immunosuppressants wouldn't help.

Believe me, if my test comes back positive, and I finally get a diagnosis, I will share the happy news with all of you. With lots of exclamation points.

Abby