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Everything posted by Ronald

  1. Well this is not good news: Digital ulcers predict a worse disease course in patients with systemic sclerosis.http://www.ncbi.nlm.nih.gov/pubmed/25688073
  2. LOL, thanks Shelley. Ron
  3. Finger ulcer update, its been 2 months and 3 weeks since I got this nasty finger ulcer. Its 90% healed the help of an antibiotic cream. It worked well, but slow. This was the worst ulcer I have ever had on my fingers.
  4. Shelley, Oh no, more stuff to worry about. Ron
  5. Barefut, I never experienced that. When I was diagnosed by a doctor in internal medicine in 1987, I said okay what now? He didn't give me any direction, just said watch your kidneys. When I landed up in the hospital with kidney problems in 1990, I gained 40 pounds of water, protein and blood was present in the urine as well as blood work all pointed towards kidneys. The doctors were really concerned and sent me for a pile of tests. I was in the hospital for 30 days. They did a biopsy of the kidney and it came back as minimal change disease. The doctors said it was not due to SD. At that
  6. Hi Judy, I never had Rheumatic Fever. I do have Mitral Valve Prolapse, this was ruled out as not serious many years ago, I would say at least 25 years, as well as the palpitations about 20 years ago. But now there is something funky going on with my heart beats, I get really erratic beats, my family doctor says it's anxiety, I do have really bad anxiety problems, but this new thing with my heart is not from being anxious. I get skipped beats, every 2 - 4 times my heart beats, it's off and on throughout the day and dizzy spells. No pattern to what makes it start or stop. There is something
  7. Thanks Jo, when I first was told I had lung involvement I researched idiopathic pulmonary fibrosis. That scared me a lot. It was not until I came here that I found out that lung disease in scleroderma is not exactly the same. It can develop, then stop progressing for years. I can't wait until I get my echocardiogram and PFT, I want to see how much I deteriorated since January 2013. I do get short of breath now, that just started about two months ago. I think I may have heart involvement as I get erratic heart beats. A ECG done 2 weeks ago came back abnormal, it was faxed to the hear
  8. Nick, I have had 3 rheumatologist over the past 25 years, they are very companionate. Write your questions down like others suggested so you don't forget to ask your questions. Having another person with you is a good idea like someone already said, two pairs of ears are better than two. If you forget some questions you will have to make another appointment to see him or her again, so like I said write them down. I am willing to bet you will come away relieved after speaking to the rheumatologist.
  9. I have been researching pulmonary fibrosis in scleroderma. I have found out some encouraging information regarding pulmonary fibrosis in people with Scleroderma, I am talking about Interstitial lung disease and scleroderma. If you research it, do not read about “idiopathic pulmonary fibrosis.” This is completely different lung disease and has a very poor survival rate. People with scleroderma and lung disease can have lung involvement and live for many years, unlike idiopathic pulmonary fibrosis (IPF). So if you have lung disease and scleroderma, only research i
  10. I am scheduled for a Pulmonary Function Test (PFT) July 25 2015. I need this test to see how much my lungs have deteriorated. But I have been practicing breathing deep but I can't do it as I cough on inhalation. If you ever had one you know they push you to breathe in and out, I hope I can do the test. I was trying it last night and got some minor sharp pains in the center chest. I don't think it was a heart attack.
  11. Nick, I would not sweat it, wait until your blood work is done, that should give the doctor an idea what's going on. My uncle had Raynauds with no underlying disease. I have been living with Raynauds since 1984, and diagnosed with Scleroderma in 1987. There is a lot of info on the net that will scare the wits out of you if you try self diagnosing yourself. Keep those fingers warm, you are a prime candidate for finger ulcers, they are painful and not fun. If your fingers are always warm, you should not experience any at this stage, anyways.
  12. Hi Shelley and Jo, That's very encouraging. My last PFT was in January 2013. The results were "moderate restrictive defect." I called the clinic and they said they don't give out percentages for lung damage. They use, mild, moderate and severe. I go for my next PFT on June 25, 2015. I know it will be worse than the one in 2013 as I now have shortness of breath. But that article puts my mind at ease somewhat. Thank you!!
  13. I was wondering if anyone has found any evidence of slower progression of lung disease with Scleroderma than just someone with a lung disease like Pulmonary Fibrosis. My scleroderma history is long 28 years, Raynauds started in 1984, scleroderma diagnosed in 1987, with slow progression, my dry cough started in about 2008, and I attribute that to my pulmonary fibrosis diagnosis 3 years ago. I am wondering if the survival rate of 2-5 years for pulmonary fibrosis applies to scleroderma and people without scleroderma. Does that make sense?
  14. Thanks Shelley, I work at a computer all day and my bed is raised up 12 inches due to acid reflux, so my legs are always down. I would love a recliner, but can't afford it as I am on long term disablity. Yes you can work while on govenment disablity for anyone reading this and wondering.
  15. Hi Shelley, I went out and bought one of those meters for O2. But this thing is screwed up. Its giving me readings like O2 81% and pulse rate of 205. I continue and it still spits out strange numbers. I paid 80 dollars for it and I am going to return it. Every time I have been in the hospital or ambulance, they have always had a hard time getting readings from my fingers, most likely due to the poor circulation. They have sometimes used my ear lobe for readings.
  16. Last Friday night, my legs were sore and all swollen up. But NOT gaining weight. Went to the doctor and they did a bunch of tests, all came back normal. Is this a symptom of Scleroderma? I had this happen to me back in 1990 when I had kidney problems, but my kidneys are 100% now. Any feedback? Thanks Ron
  17. Does anyone one here experience shortness of breath with their lung involvement? Mine just started about 2 weeks ago. It started after a nasty flu bug, once the flu was gone, I ended up with shortage of breath.
  18. Does anyone else with pulmonary fibrosis notice they breathe more than the normal rate per minute? I am about 32 breaths per minute.
  19. I had another episode of shortness of breath after a trip for groceries. I used my rescue inhaler and it didn't do any thing but gave me heart palpations about every 4 beats. Went to the doctor, they sent me for an ECG immediately and waiting for results. Had tightness in the chest, so they gave me a prescription for nitroglycerin spray. I am reluctant taking it, because they don't know the whole picture about Scleroderma.
  20. Well I had my first short of breath incident with Scleroderma on Wednesday, May 13, 2015. I went to the grocery store on a short errand run and while doing my weekly walk through the store, by the end I was out of breath, like I walked 10 miles. Never happened before. I am also just getting over the flu, had it since May 3rd. Still coughing up phlegm from the lungs. I went to the doctor the next day and she gave me a rescue inhaler. She said use this next time I experience shortness of breath, or go to the emergency department at the hospital. Does this thing work? Anyone else h
  21. Hi Amanda, I have not been doing things right. I went for many years, about 15 years, where I didn't do anything about scleroderma. I just wanted to forget about it and not worry. My course of the disease has been very slow, but the last 3 years its been getting worse faster than all the other years. I am in for a round of tests and specialists. We will see what the future has in store for me once I get all my tests done.
  22. Thanks for the reply. I was diagnosed with Scleroderma back in 1987. Had a brief 30 day stay in the hospital when my kidneys went haywire, they thought it was related to Scleroderma. After a biopsy it was not related. They gave me another diagnosis of Scleroderma. I remember some nurse that came into my room for counseling and thought I was upset at the findings. I wasn’t. Even in 1992 when I was diagnosed with Diffuse Scleroderma, it didn't bother me. It was not until I saw the 3rd x-ray results I saw yesterday seeing the progression over 3 years that has me worried and depressed
  23. I got the results back from the chest x-ray. Findings: This patient appears to be developing progressive lung fibrosis. There is more to the findings, not good, recommends a CT scan. I am being booked for one. Could be months, long wait times here for doctors and tests.
  24. Hi Shelley, I go to the doctor Monday the 27th, for test results. Will let the board know results. Ron
  25. Finger ulcer update: The ulcer is shaped like an L. It starts at the finger tip and goes around and follows the fingernail half way down. The tip has scabbed over and no longer painful, the side is still open and painful. Still on the antibiotic cream, however to me the finger looks like its healing fine. Lung update, I see the doctor Monday for test results.
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