KristaRN

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Everything posted by KristaRN

  1. While waiting to see a rheumatologist, I recently had an MRI of my knee and shoulder, which showed a lot of calcification, for which ortho doctor gave me a cortizone shot in the shoulder (i chickened out of the knee one). It helped for about 2 days, now doesn't feel any different. He also wants me to do physical therapy on my shoulder, but I've read that for polymyositis that exercise really is not a good idea. My muscles most of the time feel like I've been exercising, isn't that good enough? LOL. I thought at first, well it's just the shoulder, but oh my goodness the muscle aches and spasms in that arm are just so bad, I don't think I can do it. Any thoughts? Should I wait until I see the rheumatologist?
  2. Thank you so much Shelley and Janey. I had just about given up the idea of physical therapy until now. Making the appt's now! Krista
  3. I'm curious, when you say outologous, is that Adult Stem Cell Transplant and did it come from your own body elsewhere or someone elses? Krista
  4. I haven't yet seen the rheumatologist I have made appt with, takes 2 months to get the appt, and I wondered if anyone is in the St. Louis area that has had experience with any in this area. I hate to waste time on somebody that isn't any good being it takes so long to get in to see them. I didn't see anybody in Missouri listed on the expert list here.
  5. I also hate narcs and therefore asked my doctor for pain killer - yuch! The one he prescribed was a narcotic or opiate and may not be a controlled substance, but it ought to be. For me (which I am a really light weight in that area), I took one dose and was stoned all day long! I hate that feeling. Haven't taken it again. It may not affect all people that way I guess. My regimen right now, which is of my own concoction, is naprosyn 660mg twice daily, ibuprofen 800mg twice daily, tylenol 1000 mg three times daily, and aspirin 325mg daily. I spread these all out so I'm taking something every couple hours and it seems to help me most of the time. Other times though, when I feel like somebody has just beaten me to a pulp and my muscles are just cramping everywhere, I take an anti-depressant, mostly at night. It doesn't give me the stoned feeling that narcs do. It also helps me sleep, which is always a challenge. (It also helps my family survive my PMS).
  6. I just can't decide if the symptoms I'm having are sclero or not. Sometimes I think definitely, sometimes I think maybe something else. I can't get in to see a rheumatologist until Nov 21, so of course I'm resorted to self-diagnosis. Sometimes I think it's more along the lines of scleroderma sans scleroderma - where the skin involvement is not all that profound. I'll try to keep this "brief." I've been having terrible muscle aches and spasms for about 2 years, chalked it up to working so hard until the last 6 months and finally decided to see a doctor about a month ago. He ran tests and found my ANA to be positive at 1:160, speckled. The only thing he told me was to get in to a rheumatologist and take naprosyn. Since researching, I have to wonder if other symptoms I'm having are due to this. Like my hands, especially my dominant one, are almost always really dry, red, scaly and hard. Now I am a nurse, and I wash my hands like 50 million times a day, so I've always chalked it up to that. But then I recall how my skin started getting really dry and "flying" off when I undress quite a few years ago, which I started taking high dose Vitamin E for and has seemed to help until recently. Makes me wonder if my skin wouldn't be more pronounced if I hadn't started taking Vit E at that time. The skin on my uppers arms and neck have been rough for a while, but didn't think anything about it till now. Even the backs of my ears are rough. I didn't associate alot of other things until now either. Like how my left shoulder has been really stiff and have lost full range of motion for a long time. I had a tubal pregnancy and had surgery, to which I developed adhesions in like 3 months time. And how my scalp itches! I'm constantly asking my husband to check for lice!! (Thank goodness it's never been there, but I did treat it like it was once anyway I was just so sure!) But then there are neurological things too, more and more lately. I used to laugh and joke about how I couldn't remember things - looking at a phone and couldn't say the word phone. I even couldn't come up with my own husband's name once - been married 21 years! When I'm really tired, I just can't spit out what I want to say, which is really bad if hubby and I are arguing. I just have to shut down and finish the argument later - which is probably for the best anyway! LOL! I find myself tripping alot lately and getting real bad weak and numb briefly in one limb or another. Almost makes me think MS. So with all your experiences, what do you think? Thanks for input and sorry for long message. Krista
  7. Hi all, I am new to this group/site. I don't have a diagnosis yet, haven't even seen a rheumatologist yet. Only have my symptoms and a positive ANA to go on, so this site has been majorly helpful in finding clues to what may be wrong with me. My being a nurse helps some, although one would think that fact would be more helpful. Makes me realize just how little everyone knows about this realm of diseases. Anyway, as I mentioned, I am an RN in a very busy ER, work 12 hour night shifts, go in running and come out running. We call it a good night if we didn't have any deaths or gun shot wounds. Having drive-by drop off victims are regular occurance. It is this reason, my working so hard, that I didn't seek treatment for a long time, figured my aching muscles and joints were just because I work so hard. I have 4 children, 2 of each flavor, and 2 grandkids, 1 of each flavor, and now a new one on the way. The grandkids are the best thing ever. I get to keep them every Wed and Thurs and enjoy it immensely. I teach an after school club for elementary kids. I have plenty of other things to focus on than myself. I also am married to my best friend, 21 years and we still like each other! And some really good news - the Cardinals just won the World Series (yes I live in St. Louis) ! WOO HOO!!!
  8. Hi Janey, Just a few things I happen to know about Imuran as a nurse, not someone who personally takes it. Imuran is an immunosuppressant - it suppresses the immune system. People that have had any kind of transplant take it to keep their bodies from rejecting the new tissue. Since this disease, an autoimmune disease, is such that our own bodies are attacking or rejecting our own bodies, that would probably be the reason your doctor put you on it, to stop the body from rejecting itself. I looked it up in my drug book to see if it comes in a sustained release form so you would only have to take it once a day, but didn't find anything. Basically, if you only take it once a day, you only have it in your system half the day then. Some things to watch out for are bleeding issues - use a soft toothbrush and try not to bump into things. It affects the liver so watch for early signs of liver toxicity - like clay colored stools, dark urine, yellow tint to your skin and whites of your eyes. And naturally, it being an immunosuppressant, you want to be careful about being around other people that are sick. Hope this was helpful, Krista
  9. I've seen this used once on a young mother with MS. She came in not able to walk at all, did plasma exchange for I think about a week, once daily or every other day, and left skipping with her kids. It was pretty amazing. Krista