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About Kira

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  1. We are a special group of people, I have to say. :blink: But hearing that there are other special people out there may help me move past the "is this a joke" phase of grief. And in all seriousness, I'm sorry for everyone's symptoms, and for those that are having to cope with family members who are ill in addition to coping with their own problems. Barefut, absolute best of luck with your disability appeal. I do not have progressive MS. In fact in the world of MS mine is quite mild. Which is not to say it hasn't been devastating. But I think everyone here would get what I mean by that! My primary issue is fatigue, for which I am prescribed medication. In terms of treatments there are several injectable medications that effect the actual progression of the disease (all ms progresses). The one I'm supposed to be on slows the disease course by about %10. I was diagnosed about 12 years ago and it was a very quick process once it became obvious I had neurological problems (rather than just subjective complaints about fatigue). My only other constant unremitting symptom is spasticity, which after two years has calmed down to the point where I need only a small amount of medication to cope with the discomfort. One of the things I've learned about living with MS (that I SO hope turns out to be true of whatever else I might be diagnosed with) is that if you are persistent and gentle with your body (and really patient), your body will heal and recover to some degree from whatever damage you sustain in an attack. It's not usually a complete recovery, but if I refuse to give up on whatever body function I've lost it usually comes back. But that might just be due to the fact that the brain and spine are capable of re-routing around damaged areas. Sound's sick, but that's my favorite part about MS. It always leaves me room to work around my symptoms. I really hope I reach a similar relationship with whatever this new thing turns out to be. The symptoms that come and go are the following-tingling, pins and needles, sensations of heat or cold, numbness, mild intentional tremors, balance problems, optic neuritis and (we thought) dysphagia. I'm really sorry you're having symptoms you can't explain. I know how terrifying that can be. Especially as a mother. I have a young son and while I feel confident about parenting with MS (I have family and friends to support us) the idea of having scleroderma entering my son's life breaks my heart. So, I'm very sorry. If you do indeed have MS, or something like it, and you are having sensory issues (the hot feet) one thing to watch out for is literally overheating yourself. Staying in the tub too long, or having the heat on to high, or going out in the sun will cause pins & needles, & unusual sensations to flare up with MS. Oh. And stress and fatigue will cause MS symptoms to flare too. But you wouldn't be experiencing those now would you? Thank you all for being here. I feel like less of a lab rat here, or at the very least like I've found my other fellow lab rats when all along I thought it was just me and my family's dysfunctional genes.
  2. Kira


    :rolleyes: Oh good. I wasn't out of line with the hand comment! Yeah, I'm not winning any awards for my hands either. Oh well. I will ask my doctor about Nifediprine when I see him in September. I was in some degree of (severe) denial when I said no to his meds! I wasn't prescribed or offered anything for the pain. To be honest (and I do like my doctor) I don't think he expected anything from my bloodwork. Without a diagnosis I don't know that he could give me anything, or that there is anything to give!! I have such severe fatigue from another autoimmune (AI) disease that I try my best to avoid things that make it worse. If I can. I've been pretty lucky with that so far. My doctor. is aware of how much Ibuprofen I take. I'm trying really hard to cut back. Diet changes and staying warm have helped with the aches and pains. I have been on Omeprazole for the reflux. That and my elevated bed and (whimper) no wine and no coffee has helped. A bit. I need to be a good girl and go see my regular doctor. about my weird belly/intestinal/throat/whatever problems. I'm really nervous about ever talking to another doctor again though. Ok...I'm babbling now! Thank you for your reply! By the way, I went into the doctor, expecting to be told I had lupus. I had decided in advance that if he gave me that pleasant bit of news I was going to demand prozac on the spot. In fact I was going to demand it be brought to me in the examining room. Immediately. In large quantities. Maybe I was on to something with that plot.
  3. Barefut! I hope we have so much less in common then it sounds like! I realize this is like a year old post, but I'm brand new here and have been reading through the boards. Part of being brand new is being a little shy about talking about my health problems in a way that would clearly ID me to my friends and family who are undoubtedly looking up anything and everything they can about scleroderma. So, if they see this...Hi! :bye: I have multiple sclerosis (MS) and am in the process of being watched for scleroderma. I looked up "MS" here half hoping to find someone with sclero who could hold my hand in exchange for me holding theirs regarding MS. Pathetic I know. But desperate times.... Anyway...I really hope you do not have MS, but PM me if you somehow see this message (a year later) and just want to say hi to a fellow oddball. I even live in the great northwest and have spent many a day at Swedish. Maybe there is something in the water here? Oh, and forgive me if you do PM me and it takes me eons to figure out how to retrieve the message! (I'm new!)
  4. Kira


    Thank you all for your responses! I hadn’t realized my post had posted:-P To Shelley ,Vanessa and Joelf: thank you so much for confirming my intuition. I have an autoimmune disease already and I’ve always found that working my stubborn/effected body parts helped in that situation. And good job on the horse Joelf! I’m patting myself on the back too-I went out and weeded a bed. And felt better for it! (I was of course completely bundled up and looking kind of silly, but that’s ok). Is Nifediprine a calcium channel blocker? My doctor offered me some. I declined, but I may be changing my mind. Do any of you have low blood pressure, and do these calcium channel blockers make you dizzy? To geordiegirl: do you have the red patches on top of your skin, or underneath? My hands look increasingly like some unappetizing form of deli meat. Sometimes I wear gloves in the house not because I’m cold but because I’m afraid if I spend too much time looking at them I’m going to go completely neurotic! I’m really sorry for your aches and pains. Right now I’m living off of ibuprofen, but I already have GERD and I can see this all just being an accident waiting to happen! I have days where I go with no aches and pains and no puffy fingers, I hope you get some respite too! To Jeannie: Gloves the by fridge is a very good idea…last night I hurled a package of frozen corn in the freezer because I realized it was seriously hurting my fingers to hold it…bad move on my part :rolleyes:
  5. Kira


    What a way to say hi! Hi. I've lurked a bit here, but I need to "talk". About three months ago I began experiencing more severe Raynaud's than I was accustomed to. Now if I even so much as look at the refrigerated aisle of the grocery store my hands start showing their colors and my body starts to ache. In December of this year my fingers blistered and my hands looked like they had multi colored sausages attached to them. And I had this constant aching everywhere. My primary care doctor did blood tests looking for lupus and rheumatoid arthritis. Everything was totally normal. By the time I was able to get in to see a rheumatologist the swelling had disappeared. He diagnosed me with Raynauds and livedo reticularis and did some more blood tests. Again everything was normal except, of course, a low positive for anti-scl-70. I found that out last week. I have not been my most mature self sense.... The doctor said he would not diagnose me until he saw my hands swell again and/or skin hardening or changing. He gave me good advice about staying warm and suggested that the aches and pains would probably go away if I did so. The aches have diminished quite a bit since I've become religious about wearing gloves and staying warm. Until yesterday.... I walked for no less than 30 seconds outside in 60 degree weather in the sun without my gloves. I felt a breeze, and my fingers began to ache, then my hands. An hour later my arms and by the end of the day I was just exhausted and in so much pain...When I woke up this morning my hands were indeed puffy. They don't look like sausages. There are no blisters on them. I can't fit my loose ring on my finger without shoving it down, but if I shove it, it can go on. I can bend my fingers, but they are stiff and itchy. Actually, my ankles are a bit puffy too. I know you guys can't give medical advice or anything. I just don't want to call my doctor. I don't want to seem like a hypochondriac or be told, "yup, you've got scleroderma". sigh. I want to put on some wool gloves and do twenty minutes of weeding in my garden just to give my hands some exercise, but I don't know if that's a stupid idea or not! I have no clue what is "normal" and what is "dangerous" or if normal is dangerous? I guess a simple question I do have for you kind folks, is what causes the hand swelling in scleroderma? I am slowly reading through the wonderful articles here, but it can be overwhelming at first. I'm sure you understand. They feel itchy and hot (like an inflammatory thing-duh)...am I doing damage to them or my skin by thinking it's a good idea to move them? If I didn't know I had these antibodies in my system I would instinctively feel like using them would be good for breaking up what seems like fluid build up!!! So clueless...thank you for listening!