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Eos

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About Eos

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    Western NY

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  1. I could not take it anymore, so I called primary and they wanted me to go now and not wait till tomorrow but go to the night clinic.... so I did. I have an infection. Cannot wait to get my antibiotics tomorrow. :blink:
  2. Thank you Shelley. The lichen planus is oral actually. Travels around my mouth. I remember I had it even back in my teen years and I thought I burned myself, but still had no idea why this weird pattern would appear after a burn. I do not have any color in my skin art. I prefer black and white. I am actually thinking of getting some pale yellow to highlight the pattern in my snake images. Thank you for the info on red though. :D
  3. Anyone here had kidney issues? Infection? What does it feel like? I have had a lot of bloating since May, and just last week developed severe lower back pain and pain and pressure where my kidneys would be (back side, flank area) and also in my abdominal area (that goes away when I pee and is my only indicator that I have to pee). Is it me being paranoid, is it just gas (which I never seem to pass though.) Any ideas? Still looking for a new rheumatologist. My old one left/ or was fired (who knows). The one my primary suggested was mean and said to me "If you really have scleroderma....if you really have knee pain," like its all in my head?!! So needless to say I did not go there anymore. Plus he was in his 80's and hard of hearing and lacked bedside manner. So I guess I have to either suck this up and hope it will go away, go to Pittsburgh again and spend a lot of money, or try another local rheumatologist. Anyone in the Buffalo, NY area who can recommend a GOOD rheumatologist who does still take new patients? (In my area this seems to be a rare case). If so, please send me a PM with their name. Freaking out and very frustrated. :temper-tantrum:
  4. Hi, Interesting... I have scleroderma sine scleroderma and am on tattoo #2, which is a huge piece covering arm and most of my back. All healed up no problem. I would not describe my sclero as stable but all my issues are internal. I am on oral dexamethasone for lichen planus practically every month also. My rheumatologist (she was terrible!! She quit since and this left me without a rheumatologist as of now) did not want me to get it done. I did anyway since I figured that I might as well live my life the way I please as my medical issues restrict things already (fatigue, Raynaud's, intestinal issues to just name a few). My first tattoo -- the size of my hand -- healed up perfectly in 2 weeks. Number 2 (the big one) has healed too. I just got the outline done so far, and have to wait a few weeks to get the shading started. Of course it is mandatory to find a good tattoo shop who practices sterile technique. My artist uses a new needle for every client, every time and takes other precautions to prevent infections. Plus there is a lot of aftercare involved for weeks after the tattoo was done. I guess I would not do it if I had skin involvement. I wonder what skin art would look like after the thickening?
  5. Thanx Amanda. I have been called alot of things (grumpy, bitchy, ...)... but amazing thats the first. :wub: No there is no known treatment for the MADD, besides frequent naps of course. They say to take 500 mg of ribose per day before exercise, but it has a very short half life, hence it won't be around for long.... and taking too much causes diarrhea. Seeing my doctor in august...the nurse said I should think about a muscle biopsie. OUCH! I envision them cutting a hole in my thigh and tearing out a piece... Just feel like crawling in a big cave and never coming out lately.
  6. I am just about afraid to see any new doctors anymore. The new rheumatologist found I had arthritis of multiple joints and a muscular dystrophy disorder, causing muscle pain and extreme fatigue: myodenylate deaminase deficiency. Shocker yes, but in a way I feel like people now have more than ever no right to call me lazy or weak. The reason why stairs get me tired actually has a name. The reason why my fat butt cannot manage a gym has a name. (I have gone up from 110 lbs to 130 lbs in the past year and I am only 5'2"... it all collects in my butt/hip area.... ugh!) The doctor gave me mobic for the pain. Anyone taking that? I have some side effects.... bloated to a point where I look like I am approaching the 2nd trimester. Cannot get into my clothes. I went off it about 1 week ago, but still bloating. I am not vain, but please someone at work asked my coworker whether I was pregnant!!! YIKES! Suggestions? Gasx, no effect.... stool softener no effect... what to do? :temper-tantrum: Why don't they make meds that cause weight loss and concaveness for once?
  7. I'm seeing Dr. Medsger at UPMC. He is great!
  8. Hi, I was seeing a doctor in Buffalo NY and never felt like she cared or even tried to help me. I had to initially beg her to give me something for my Raynaud's, only to almost go gangrene a year later needing a sympathectomy. She won't help me with joint pain and stiffness, unbearable fatigue and general just feeling like I cannot push myself through the day anymore. She thought as long as I still have sick time, I am not too bad. Now no more sick time I am in a MAJOR fail-up and she still does not care to help me. So I requested my medical records and SEE YA! Every non-medical person can put a positive CCP and extremely painful and stiff knees together = patient needs help. Sorry I am just soooooo frustrated and painful. Even laying down with a pillow under my knees hurts! :temper-tantrum: Seeing new rheumatologist on June 1st. I have a tiny bit hope!
  9. Pain and swelling in the feet. Has he been tested for amyloidosis? Just an idea, as a friend had similiar symptoms and that was her diagnosis. Also I read somewhere about (trigeminal) neuralgia being linked to scleroderma in rare cases causing a lot of pain. I may be wrong.... I hope your partner will feel better soon. You may want to find a scleroderma specialist to get a second opinion on this situation. Nobody should have to endure pain all the time!
  10. Hi, Yes I went to see my local rheumatologist and she said my skin is fine and she has no idea why I was itching. Am I sure it was not just anxiety?... She did not want to give me anything. Have to see allergist, who I know he will say its my sclero. I am scratching and scratching, and no avail.
  11. Hi, I have been so itchy lately. I cannot stand it anymore. I scratch myself red and/or bloody and I cannot get the itch to stop. I actually dreamt about scratching/ itching and woke up doing it. Suggestions... what is helping? I cannot handle this too much longer. :temper-tantrum:
  12. What are you trying to achieve by surgery? I'd be worried that the scar tissue will add even more issues, after surgery than you had before? I had hand surgery in Rochester, New York for Raynaud's. The surgeon was phenomenal, his name is Tomaino. He is wonderful and takes a lot of time with his patients. Good luck!
  13. kaykay... that gives me hope. I am trying to avoid having them redone too. It was just way too painful the first time!
  14. Hi, Since 1987? thought you had to get them redone every 10 years? I believe it is due to hardening as your body will form tissue around it and it will get progressively tighter. I have had breast implants since 2005, (saline). I am under the impression that only the silcone filled one can be bad when it leaks...? I don't think my implants caused or worsened my sclero. I had Raynaud's (RP) and fatigue/ joint pain before I had them done already. Personally, if I was you I'd keep them, maybe just get them checked and get a 'tune up' if necessary. Our body is already changing and many of us may have problems with the loss of e.g. upper lip, soft skin, health.... its nice to retain something that makes us feel attractive! (I may not have too much upper lip, but still well-formed underneath .... :emoticons-yes: )
  15. Hi, so I broke down and called the doctor's office. Talked to the PA. I guess they mean by metastatic disease that the scleroderma manifested as RP... so to say the sclerosis went in my fingers.... akin to a primary tumor causing a met somewehere else in the body... just still not so sure where my sclero equivalent of primary tumor would be? Blood work markers? :blink: I somehow dislike this whole cancer analogy.... makes things seems so.... terminal.
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