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About Loyhargil

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  1. Okay, I had my appointment with my general practitioner today. I have to admit, this is the first time in my life I've gone to a non-specialist, said the words, "localized scleroderma," and had them not look at me like an idiot, it was quite refreshing! Explaining the fatigue, headaches, and increased joint pain to him, he immediately ordered bloodwork and took it right there in the office. He's doing four screens total, although all I remember are the quantative ANA and the ENA. But he said if we get a hit on any of the four, he's immediately referring me to a rheumatologist. He said he's going to be looking for Lupus and other diseases, too. This was actually a good experience. In my old home state, anytime I talked to a doctor about 1 - joint pain, 2 - fatigue or, as I explained earlier in the thread 3 - showed them the brown patches of skin, they told me 1 - take a Tylenol, 2 - get outside more and exercise so I won't be so depressed, or 3 - "Rub jock itch medicine on it!" :-P In my new home state, I finally have a doctor who recognized localized scleroderma, immediately pegged the biopsy scar, agreed my fatigue is at unnatural levels, and wants to actually track everything down. What a relief.
  2. I've noticed the fatigue thing lately - I think my recent pregnancy (7-month-old son) may have reactivated things. I just cannot sleep enough, and you're right, it's not a "been active" tired. It's not even a "boy, I've been up all night!" tired. It's just a "I just can't do anything but sleep" tired. So far, I'm still waiting to get in with my general practitioner (he's not the most responsive fellow), and I'm going to immediately ask for a referral to a rheumatologist. Even when I was first diagnosed 17 years ago, no one ever put me on any medication. All the dermatologist at that time did was measure my arms to make sure they were the same length, and sent me on my merry way. But the itching - ARGH! My spots are right on the waistline, so either pants or pantyhose are constantly hitting those, and on my arm running up the lower outside part to my armpit, so I feel like all I do all day is itch. Keep me posted on what all you do, and I'll keep you posted, too!
  3. I have to say, I'm a bit intrigued. I believe my localized scleroderma (including morphea) has reactivated, and I'm also having just severe fatigue issues. But very interesting you get almost "mirrored" spots. I've never had one pop up on the left side of my body, it only pops up on the right. Very strange, the similarities and differences there. Good luck with everything. I'm glad you're finding some relief. I'm still waiting to get through doctors to try to get some action done. Gotta love people's busy schedules.
  4. Oh, Jefa, I can't believe I missed what you said the first time about my name. Yup yup, I'm a Doctor Who fan! Nice catch on the obscure reference! :-D
  5. Thank you all, I appreciate the input! I'm hopeful about the rheumatologist. I just wish I could get the referral quicker. Back when I was 19, I just didn't bother finding out more about it (although like was pointed out, it's not likely I could have found much anyway). Guess I'll just wait and see what happens here. Thanks again very, very much!
  6. I have a couple of questions about localized scleroderma, if no one minds. First, is it possible for it to periodically re-activate? I initially started showing symptoms at age 7 (although I wasn't diagnosed until 19). I'm 36 now, and it appears to be growing again. Can pregnancy cause it to reactivate? Second, I've seen some conflicting research, some people say localized scleroderma never shares the far-reaching symptoms of the other forms, some say there is some crossover. Can localized scleroderma have some similar symptoms to diffuse or systemic (such as fatigue, dizziness, IBS, etc.)? Which leads me to third, I've read that periodically, other forms of scleroderma can be initially misdiagnosed as localized scleroderma. Is this possible if the diagnosis was made via biopsy? The dermatologist who made the diagnosis didn't do any other tests aside from the biopsy at the time that I can remember (although that was 17 years ago, so maybe I forgot). To kind of put things in context, here's a brief rundown of my history. At seven I began developing a brown patch on my right abdomen around a chicken pox scar. Initially Mom thought it was ringworm, but it didn't go away with treatment, and other spots began appearing - one more on my trunk, two on my arm. Mom took me to the local small-town doctor who said it was a fungus, and told me to rub jock itch medication on it. This essentially went on for the next 12 years, and I didn't give it much thought. Except that I hated doctors for making me use jock itch medication, and that I hated changing in the school locker room because inevitably, someone would ask, "What on earth is THAT? Ew!!!!" At 19, I noticed one spot on my arm and one on my stomach were increasing in size. This time, my new college town general practitioner referred me to a dermatologist. The dermatologist looked at it and immediately said she suspected it was localized scleroderma - linear and morphea both - and did a biopsy of one of the spots on my arm to confirm the diagnosis. She told me it would burn itself out in no more than five years, which I found odd since I'd already had it for 12. But she didn't seem concerned, so neither did I, and I just went on. Now, I'm older and wiser and have been researching it on my own more. I'm getting ready to see another general practitioner (so I can get a rheumatologist referral). I gave birth to my second child in February, and since then I've noticed three more spots on my abdomen, and I've noticed that the two separate spots on my arm have merged into one giant line, and have begun growing further up my arm toward my armpit. In addition, there's a new small spot near the line on my arm that is the same color as the others, but only about the size of a pencil eraser, raised, jagged, and hard to the touch. Has anyone had any kind of experience with this? Since my son was born, I've also been suffering from extreme fatigue - and not because of him, the little doll's been sleeping solid through the night since three months old. But it's basically all I can do to get through the work week, and I've struggled to stay awake at my desk. Embarrassingly, I fell asleep while on a conference call with my paralegal, who thankfully wrote it off to my being a new mom and didn't fuss about it. By the time Friday rolls around, regardless of how much sleep I've gotten during the week, I end up sleeping a full 12 hours Friday night, and nap at least three hours the next day. Then I sleep another 12 hours, generally do okay Sunday (although I may still nap for up to an hour), then start the week over. I've also noticed I'm bruising easier than ever, my TMJ has flared up, I'm constantly freezing cold, I'm wearing socks to bed in the summer, I'm nearly always nauseous and/or dizzy from the time I wake up until mid-afternoon, my fingers hurt a lot and periodically swell, my always-sensitive skin has reached new incredible levels of dryness and sensitivity, and my hair is starting to fall out (which admittedly could still be the result of post-pregnancy hormones). Since some of these can be cross-over symptoms to autoimmune diseases, I'm getting a little worried. Hopefully the doctor will work with me well when I see him in two weeks. But I figured I'd just kind of throw this out there and see if anyone else has ever had similar experiences, or if they can point me to other resources (I've already checked out this site, webmd.com, mayoclinic site, and wrongdiagnosis.com for more info).
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