Well so far so good. Big big test this time to see what would happen once he read some of the records from the univeristy. Jen and I both know that look when they are really nolonger interested and how it sounds in the appointment.

Alot of was disucssed as he tends to have longer appointments. Things came up that sure wouldnt from the last neuro. When my myositis came up he said do you have it in your body. That led to if you do then you could have Polymyositis and that needs a biopsy. A HUGE piece was him going on to say that the biopsy could prove I have it but wont that I dont meaning if the biopsy is negative that could just be the wrong piece of muscle. Again this is sure something my old neuro would NEVER have said and would have taken any lack of results as more ammo to treat me, see me even less. My daughter asked her what she would do if it came back negative. She wouldnt answer but proceeded to say she wouldnt see me again until I had the biopsy.

Big thing number 2. He set the injection of mestinon for my eye surgery. My last neuro wouldnt do that. He even asked if I'd like to do it at home!!! I practically jumped out of my chair and yelped YES!! I said haveing lost so much this last year having a sense of control like that would be super! He said he preferred to have the hosp do it I said I understood as I was new to him but in the future this tell me he could give me injections to do at home for my breathing when he knows me better. How amazing!!

When he brought up that the neuros at the univeristy disagree about me having MG I said well my pulmo doesnt. I said as my breathing has always been worse they always get it best. I then handed him the Mayo Docs report about the paritial diaphragm paralysis that was very support when the neuro there wasnt. I didnt give him the other Mayo data.

Gotta go. Myositis headache worse from the going out. Oh one more thing. He does want me to go ahead with the biospy.

Annie59

Yeaahh! This is great news. Oh, the looks, we all know what they mean! I hope you are able to take a big breath of relief that visit went so well. We will hope they keep helping you!

So happy it was a wonderful and productive appointment!! Sure sounds like you have found the doc to stick with.

I think it is key that he didnt stop thinking, listening. questioning after he read the univeristy stuff. After he knew I was seronegative. He did say at one point in a casual way that I hadnt passed and EMG. I countered with that I believe if I were tested in the summer (and fully off mestinon) I would test positive. I said if I went to Mayo again it would never be in winter as the results would have been different. My daughter even recalled how cold the room I was first tested in at the univeristy.

He remarked again this time was we were discussing mestinon for the surgery, "now what does it does it affect for you?" So I told him again. I also said he hasnt seen the worst as I am worse in summer. He is still gathereing information. That has stopped to a larger part at the univeristy. We even had the conversation about the polymyyositis possibly being part of whats going on. Polymyositis is one of the things that should get ruled out if MG is susupected. I tried to bring those symptoms up last november with the last really lousy appointment with the ped neuro who put 2 young students. I think polymyositis is something a young student wouldnt necessarily pick up on. I am putting down students. It is a hard to pick up disease. It sure needs an open mind not a place where my mental health is constantly being put oout as first thoguht.

Annie59

That is good news, it sounds as if you have had a very rough go of it.