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Ronald

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  1. Sweet, I am actually serious. I use to eat a very poor diet and I think that made the process slow down. Junk food and fast food was a main part of my diet my entire life. This last year I have changed, exercising, eating real good and my SD is getting worse.
  2. Hi Pamela, I just may have to get use to it. Seeing my scleroderma getting worse is a bit depressing, ulcers are really getting bad, and winter is not even here yet. I guess I am lucky, this all started back in 1984 and diagnosed in 87, internal organs involved, lungs, GI, tight skin, etc. I cough so much you would think I had lung cancer. But I am still here 32 years after diagnosis. Maybe its all the junk food I ate over the years.
  3. Hi, It's possible, and am not sleeping well at all, I get 3-3.5 hours sleep every night, I just cannot sleep. In the daytime I have a hard time functioning, due to lack of sleep. The infection and 26 days of IV and oral antibiotics really messed me up. I think my immune system is not operating at full capacity due my my illness. That's all I can figure out what's happening.
  4. Hi everyone, For some reason I am getting more painful ulcers on the end of my fingers. This all started back in the 80's and when I was first diagnosed with systemic scleroderma in 1987. For some reason I am getting more painful ulcers that take a very long time to heal. Not sure why all of a sudden they are getting bad. Been very sick with an infection lost 22 pounds (not from scleroderma). Any hints? Any advice?
  5. Only pain killer I take is Tylenol (acetaminophen), extra strength. I tried an Aleve ( naproxen) and could not pee.
  6. Went to ER by ambulance last night, swelled up really bad, face and neck, every hour it got worse, waited in ER 5 hours, they gave me 2 antibiotics IV, no sleep, got home at 6:50 ate (hard to eat so much swelling) and went to bed. The swelling stopped. My face is pretty bad though. But the progression stopped with the IV antibiotics.
  7. I am getting a referral to her on Tuesday, as I have not seen her in 3 years, they need a referral letter. Thanks for the support.
  8. Thanks for the reply, I am in pain, lost a LOT of weight, weak, night sweats, not sleeping well. Went to the doctor yesterday, my family doctor is on holidays, this old guy didn't examine me, didn't send me for tests, just said I am a little frail or something to that effect then switched topics and started talking about meds I have been on for 20 years, cutting me back. I was so upset, I walked out of the office in tears.
  9. Hi, I had minor oral surgery on the 31st of July. The dentist cut away 5mm of gum on a lower canine tooth to gain access to a cavity. It swelled up, but I was told that was normal. I was using a special mouth wash. On the 7th of August I had the tooth filled and it started bleeding again. On the 12th I went back to the dentist complaining about jaw pain and swollen face. He said keep using the mouth wash. Later that night I went numb, could not feel the area he worked on. August 14 I seen my family doctor, she took my temperature and I had a fever, she put me on antibiotics, 2 days later the fever broke, I went to another dentist complaining about bowel problems, and she put me on a new antibiotic. I have been on that one since the 17th of August. August 26 I went in to see another dentist, as the other one was on vacation. He said he didn't think it was filled with pus, just blood and fluid. I asked if he could try and drain it with a needle, he didn't think anything would come out, but I insisted and he tried and nothing came out. Now the area swelled up again. My antibiotics run out in September 1. I have systemic scleroderma, diagnosed in 1987. Lung, skin, GI, involvement, you know the drill. Wondering if this delayed healing is all due to scleroderma. The dentist and doctor do not know what to do, I am still numb and swollen. Any advice would be greatly appreciated.
  10. Joelf, my ulcers are on my fingertips. Rare that I get them elsewhere, but I do have one on my right foot, on the side of it and it causes no pain like the fingers do. Glad to be back. 2 weeks ago I was diagnosed with osteoporosis and extremely low vitamin D. I am on treatment for that now as well. I collect diseases.
  11. I was diagnosed with systemic Scleroderma back in 1987. In 1984 I started to have problems with circulation in the hands and feet. Then the finger ulcers came, painful. My doctor a specialist in that area at that time (1992) said to use a solution of warm water and 50% bleach and soak your finger tips in them to soften them. Has anyone ever tried that? I have a real painful one right now, I should say extremely painful on that throbs all the time. Just wondering what others do. I try to keep warm and cream on my hands (I know cream does not do anything for ulcers). What do others do for the pain?
  12. Hi, My old account is not accessible. My question is I have swelling in both legs, but my left lower leg is much worse. I have had a 2 year history of this, when I went to the Rheumatologist 2 years ago, she sent me for a blood clot test and it came back negative. I do eat a lot of salt. But I am wondering if the leg swelling is due to SD or my lung fibrosis. I had a CAT scan of the lungs and they found some water around the heart, I did not follow up as my doctor gave me the boot as I was not able to make my appointments. I have a hard time leaving the house, due to severe anxiety problems.
  13. I went for an ECHO back in July, the finds (one of them) were Mildly elevated esitmated pulmonary pressures. Now does this mean I have to go for a right heart cath? That is the one test I dread. I have not been around for a while, I am depressed about tests coming back with problems. I suffer from depression. Have had it for many years. Just not in the mood to chat at times. Had to put my CT scan off till Oct and my Lung specialist off till early Dec.
  14. Thanks Shelley, that made me feel better.
  15. My finger ulcer has finally completely healed. It started in April. Now I have a new one on the same finger, not in the same spot, smaller but still painful. That ulcer was the worst one I ever had. The relationship with digital ulcers and PAH has been documented, I think I may have PAH. I had a ECHO and the heart doctor said there was some thickening on the vessels in the right side of the lung and heart. I hope I don't have to go for a right heart cath. I dread the use of a bed pan.
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