DesertFlower, Yes I was seeing big improvements first from reduction in pain when at that point engulfed my whole head and some of neck from the myositis. That was the steroids mainly but I know the vitamin D mega pill start helped too. That was in 2 week peroid or less. I had to move on the pain as it was leaving me wanting to die honestly. I have never had pain like that except in the worst of childbirth ( and I am old enough that I was in the no pain meds time for that).

The myositis actually got better in the summer because I greatly increased my sun expose to up vitamin D levels. I have been consistantly lower since I lost ability to drive this year due to vision getting so much worse. That hit with an MG exacerbation in March 2010. When I couldnt get thru after repeated calls to the senior doc at the university I just went this way. It was the beginnings of the university dramatically changing there treatment of me. The student was all I got and was literally insulting and mean and believed mostly nothing I said. He railed back at me at one point and said "so forget the muscle biopsy!" I was stunned having no idea why he was irriated and or angry with me. Now that I have read more of my record and get the intense cynicism there it makes sense. I cant fight this stuff myself this sick. I had this time to try to find treatment in my city.

I hoped getting this big influx of vitamin D would be as good as the increas in sun in the summer. But then for me vitamin D by mouth has not worked as well as sun. Thats why I was deficient. After the first 3 treatments I did have 2-3 days of great stuff. There was good prior to that that was milder but a relief.

I have known that I may have to go back and attempt to be believed at the university again tho with the last neuro really such a hatchet job added on top of the other stuff even my pulmo who is the head of the pulmonary rehab and testing lab cant get them to do the testing he says I need. He is a big cheese and he couldnt even get the last neuro to do a simple swallow. The student just said to me "have you had a swallow test?" It was at the end and I was in a fog. I said yes but was not clear tho not sure that would have mattered. The test was in 2008 fall and I dont exactly the results but did have trouble and was referred to a swallow therapist person. I said it was done in my town and the neuro said "oh well you see....." as if then it was useless. They didnt even ask for a copy. She had her mind made up.

I have to make a move of some kind. I am not sure what and now that I am going down hill again in an unexpected way I am less up to that challenge. But I have to as the alternative is not having the myositis cleared so I can go thru my eye surgery for cataract and just getting a handle on the myositis period as it needs to be. It makes me angry that when the surgeon at eh clinic who did my last cataract sent the referral down for me to be seen nothing was done. I was not given an appointment. They told his nurse that they had to read my case first. Now that office didnt do the best job of documenting my need and that the the pain had spread and was worse but still this is abig deal. Its my vision as the myositis is affecting my eye muscles. I am honestly stunned that they wouldnt even call me and ask what is taking place. But like I said I think this student doc is involved not Dr C the senior doc so what ever his ax to grind is I would have to get another doc there to advocate on my behalf to get in at all and if he sees me he will not believe what I say and slant the visit not in my best interest.

Another option is to call the eye specialist in Marshaltown and see if he would treat this. My daughter wont like this as she doesnt and I dont either want to make two trips there. I wanted to have it just be about the changes in my vision that are MG related. If I am still with myositis I question if he can any better than the university sort out that both can eb affecting my vision which is what I know to be true. That has to be a hard hard thing for any neuro optho doc to determine.

Sorry if I am unclear here. My brain disconnect is worse than usual.

Annie59

Annie,

I have read all of your posts and what concerns me is that there seem to be a number of different docs that you have sought treatment from over the last two years....but there doesn't seem to be any continuity. And while you are trying to function as the source of continuity, it seems to be too much for you when you are feeling so poorly.

Have you considered contacting either your hospital or MDA clinic to see if they could hook you up with a 'professional' medical advocate ... someone you could share all of your info and concerns who could advocate for you with your doctors? (You seem to want your daughter to function is this capacity - but it hasn't been too successful.)

I very much question the likelihood of any sucessful outcomes when there are so many different docs treating you in the same relative period of time - often without knowledge of other's treatment plans. While it has to be extremely frustrating for you, the reality is you have many different (and difficult) issues that need to be addressed ... and it may not be in your best interest to attack them all at the same time.

Perhaps working with a medical advocate, defining an 'order of attack', and waiting for treatments to have an opportunity to 'kick-in' before jumping to another option (or doc) would allow real some progress in your overall treatment.