I have missed sharing stories and thoughts here. Since I started the new treatements about a month ago alot has changed. I started 3 weeks ago yesterday with my new neuros order of weekly 2 bags of IV fluids with the 50,ooo unit vitamin D presciption pill. I had gone on steroids just prior to that for my myositis. After getting a fresh prescription for the steroids and morphine ( 10 15mg pill per month) from my family doc I felt some relief. I was too sick and beaten down to try to fight the politcal mess at the university that had left my myositis get so bad my whole head and neck were involved. I knew the next level of treatment from them was steroids so getting them locally was a life saver. The myositis pain had me in a bad bad place. Having the morphine till the steroids kicked saved me. I couldnt take that level of pain much longer.

I had my 3rd vitamin D pill and fluids Friday. I am seeing some familar and some not from the vitamin D increase. Doing the steroid at the same time is hard but necessary. Early on I noticed when I went up to 10mg of steroid per day my strength went some and my breathing was more consistantly good. It didnt last tho as I had to reduce dosage.

The steroid pill is adding to the dry caused by the vitamin D that is trying to be countered my the fluids. I suspect it is something inactive in the pill not the steroid itself. There was one brand of generic mestinon that did this to me. The dry is not just simple dry mouth. It affects strongly every orafice and even leaves me weaker as if I havent drank enough. After these past weeks I have learned that If I got fluids mid week again I think I would be OK. Or if I was off the steroids which isnt posssible.

I have interesting things go on when I get the fluids. Generally I breath better and I get some stronger. But the dry out makes it harder for me to see by far and that is where I am at today. It has been a roller coaster because of the side effects, after affects trying to drink and salt and try to get the fluids to stay in my body like the IV fluids do better.

I got to babaysit for 2 hours yesterday for my 2 year old granddaughter and her sister 8. This is the first babysitting in over a year as I had been much worse. AND today I actually made it too the young ones birthday party! That even shocked me. 2 days in a row of more than me holding dwon my couch!

I do have a raw hand developing from something. Not sure. I will watch it closer now that I know I am beyond just worse dry skin.

I have been thinking of you all and wanting to check in but the body wasnt cooperating. I was lost in a lot of adjustment on multiple levels.

Annie59

So gald things are getting better for you!! That's wonderful news.

Annie, it sounds like things have really turned a corner. So wonderful to hear you got to spend some time with your grandchildren! I hope things keep getting better. Thanks for letting us know.

Abby

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

If the steroids are making you worse, you don't have to take them...talk to your doctor immediately. Don't stop taking them on your own but let your doctor know. There must be other treatment options for myositis besides steroids.

I don't understand why you are getting multiple new treatments at once...the fluids and vitamin D should be given time to see if they are helpful before starting another treatment, at least that is my non-doctor opinion. How will you know if these two are helping if you start steroids, too? I'm confused.

I want you to receive the best treatment. You were just feeling better recently, right?

Sorry if I'm missing something, but it seems to me that there should be a delay before starting steroids. Please talk to your doctor.

Annie, You need to go to the doctor (primary) about your hand. It does not sound normal. They need to see what it looks like. Please go in. I, again, am concerned that they are missing something with your health.

Also, I would again encourage you to find a new rheumatologist. You need someone to assess if your "myositis" is polymyositis or dermatomyositis or inclusion body myositis or something else. Everyone deserves to know exactly what is wrong with their body. There's a lot of "guessing" with you that is not helpful.

You have to tell the doctor who prescribed the steroids that you are worse. You never know what exactly is going on that is making things worse. Please contact them right away. You are on pain meds and the combo of Pred and pain meds can cause all kinds of problems.

I hope you can find the right combination of things to make you better.

Annie

Oh Annie,
I am so sorry you are going thru this. All the advice your friends have given sure sound good. I hope you do get help.
I undestand how devistating it all is. I am sorry your appointment went so bad. We all know that feeling, already diagnosed before the door is opened. Not fair. A waste of our time. Feeling at such a weak point just makes it so much worse.
I have no words of knowledge but know I am thinking of you and hope you are able to get the help you need.

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.