Lastnite I have to admit I was a little tearful as I have had a string of worse days. I really hate that I have to be on steroids for the myositis as I am pretty sure if not for that this wouldnt have happened. The steroids are messing with the good that was coming out of the fluids and the vitamin D
5oooo pills. I am not sure what to do.

I am scheduled to go back to the University for the first time since the really lousy peds neuro I saw in November. Her writings are only gonna worsen things as proved by the attempt by my eye surgeon to get me seen there for the returned myositis and the still eye movement problems which I know are much due to MG. That never happened. The said they had to read my case to the nurse and never called me or made the appointment. The neostigmine injection did help my vision alot and my mestinon does help somewhat if I can take enough, if I could take the 60mg I used to. (changes on that front as the vitamin D treatment has improved my mestinon tolerance alot in the 4-5 days.)

I havent read thru what the peds neuro doc/her student that did the most of the visit and I am gonna have to do that. This is not not something that is good for me. It will be very stressful as she was so so set in her assumpttions before I even saw her and was hugely influencing her young students. It was a bad bad appoitment. I was so much sicker and feebled in my thinking, beat down that I could nolonger sort thru 'that kind of fight." Reading portions of the book My Imaginary Illness by Chloe sure were eye opening. Doctors who do believe you have MG needing to shut the hosp door and say this but say dont repeat this. So you dont just need a doc you one with extraordinary courage to treat you and go against the ignorance driven politics.

The steroids at this point are actually making my MG worse. This is my quandry. My family doc prescibed them. I was doing great when I had increased to 5mg 2 times a day but after a few days the side effects were too much and I had to cut back. This is when I started to get generally worse with breathing and strength and at a certain point the myositis began cause mild pain again which had been gone. It is possible if I took a differnt steroid I could do a higher dose. There weariness is back with the worse breathing so having that fight in an unknown amount of phone calls is hard to acept. I am going thru annual appartment inspection and that has me needing to focus there greatly. The Civil complaint on discrimination is affecting this.

Annie59