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Everything posted by Ronald

  1. Jo and miocean, Thanks for the reply. I have not been tested for pulmonary hypertension yet. Had a PFT done in late June and scheduled for a Echo late this month, also waiting to see a lung specialist. Just wondering how others are coping with SOB. I went grocery shopping yesterday and had no issues that I could remember. I could have had SOB but I didn’t remember if I did or not, or it was not bad enough to remember.
  2. How many here experience SOB (Short of breath) ? I get it every day with physical activity like going up a flight of stairs. Walking does not do it. Stairs are really bad. How and when do you experience it?
  3. Shelley, First O2 test from an artery was the day I was admitted into the hosptial for my 30 day stay back in 1990, thats when I had 40 pounds of water in me from my kidneys not working properly and I had a real hard time breathing with all that water. The second one was a PFT in the hospital, they only used artieral blood for the O2 readings for PFT back then. The most painful part is when you are laying down, you have to apply direct pressure to the injection site and hold your arm up, that was a pounding pain, worse than the needle. You had to apply hard pressure for 10 minutes.
  4. Thanks Shelley, the ideal method for O2 is a needle in the artery in the wrist and draw blood. Then they measure the O2 in the lab. I have had this done 2 times in the hospital, it really hurts, but is very accurate.
  5. Thanks for the reply Shelley and Jo, My O2 was 92, they could not get a good reading as my finger circulation was poor. I have always had problems with those devices on my fingers, never can get an accurate number.
  6. Got my results back from the PFT. Didn't say much. Whole bunch of numbers that I cannot figure out. Lung volumes suggest restriction (both TLC and RV are decreased). The diffusion capacity is reduced. Restriction with low diffusion capacity. O2 saturation is normal. I will have to wait until I see a lung specialist to get an idea where I am at with this test.
  7. miocean, I misread your message, this is how to insert an image, using the editor: Watch this video: http://screencast.com/t/9FgTPaFzGz6u Make sure you have the right URL to the image, then use the image tool like in the video and paste it into the box and your image will appear in the post.
  8. Thanks Shelley. Last time I had scleroderma blood tests done was at the hospital back in 1992, as the labs could not do all the tests at that time. Now the labs can, and are asked to send the results and serum to the diagnostic department at the hospital.
  9. Here are the extra blood work I need done to get into to see a Scleroderma specialist, this was taken from a form the hospital faxed my family doctor. To see a specialist you need a whole bunch of tests done before you get assigned a doctor. I have no idea what to make out of these tests:
  10. Steve, I was diagnosed with Raynauds in 1984 and Scleroderma in 1987. I am now 52 years old. I have a lot of problems related to it, my biggest on right now is lung involvement. Just had PFT yesterday, should have results back in 5 days. The disease progresses at different rates in different people. You need a good Scleroderma doctor. Having SD is not an automatic death sentence, you can live years with it. I am proof of that.
  11. Thank you Shelley, really good advice!!
  12. Thanks Jo and Shelley, if it's not one thing it's another. I wish it was a molar, because no one will see it missing. The day it's removed I will have a black hole in my smile, and I can't afford a false tooth. I will print that page out and give it to my dentist. Ron
  13. I have an eye tooth that has been giving me problems for a couple years. The dentist has only seen about 5 of these in his career. He said my body is attacking the root of the tooth, rotting it. He may have to pull the tooth at some point as there is no way to fix it or prevent it from getting worse. Has anyone here heard of such a thing? Do you think it's related to Scleroderma? I know Amanda will think it's related.
  14. Shelley and Jo, Thanks for the reply, I was not aware of Anemia of Chronic Disease. That may be the cause of my low B12. On B12 supplements now.
  15. Maz White, I am sorry for your loss. It's hard to predict the course of the lung disease. Just have to keep hope that it will be a long time before the lungs fail.
  16. About a month or more ago, I was having really bad heart palpitations, sometimes every second beat, the heart would skip a beat. I could really feel it. Was sent for an ECG and they showed up on the test as well as 2 other abnormalities. For about the past week now, for some reason they have not been bothering me, or I am not noticing them. I had a blood test recently and my B12 is low and low B12 can cause heart palpitations. I have had them for years, but never that bad. But I am wondering why my B12 is low. So if others here are going for blood work, ask your doctor to test your
  17. Thanks Jo, I am on a waiting list for a specialist, it could be a year wait. Very slow here with healthcare. Still waiting for my CT scan that my request was sent to the hospital 2 months ago, they have still not contacted me.
  18. I went to my family doctor and she sent me for some blood tests, Anti-Nuclear Antibodies and Rheumatoid Factor were negative. How can that be since I have scleroderma? She said the medication my specialist has me on must be working, I said I don't have a specialist yet and am not taking any meds for Scleroderma. Just for symptoms like acid reflux and pain, not to lower my immune system. She had no answer. My B12 was low and my thyroid was high, but not high enough for intervention. Any thoughts? Is this normal to have negative results and have scleroderma?
  19. Amanda, I had a kidney biopsy, that clearly identified my kidney disease called minimal change, and not related to Scleroderma. Thats why I was in the hospital for 30 days, piles of tests and after the biopsy, on water pills and 125 mg of prednisone every two days to get rid of the 40 pounds of water I was retaining. I was 130 pounds, but with the water, I was 170 pounds.
  20. Amanda, I do have left anterior fascicular block (LAFB). The doctors and I dismissed it. Even the specialist to whom I faxed my ECG. This ECG was taken in 2012. I had one last month, no LAFB. My heart has settled down, I don't know why. See: Routine EKG finding could signal serious heart problem. I have lots of questions for the heart specialist.
  21. Hi Amanda, I am not sure how that message got here, it was for another board. Oh well. In 1990 I spent 30 days in the hospital going for a pile of tests as my kidneys went haywire, it was determined that it was not from scleroderma. I went into remission in 1992 after treatment. At that time I started to see a rheumatologist and was diagnosed with diffuse scleroderma. She moved to another city. I only went to another rheumatologist back in the late 90's, no tests were done. Then nothing for about 15 years. I developed a dry cough around 2008, that I thought was from acid reflux, bu
  22. Amanda, You have a way with words. Do you write for a living?
  23. I developed symptoms when I was 21, diagnosed when I was 24. My progression was fast at first, then it slowed right down. But now its active again, and I have internal organ involvement. Scleroderma for some people goes in waves, its active then it stops. Don't lose hope. I am 52. I use to work in an auto body repair shop, started when I was 15. Thats what I believe caused my disease.
  24. I developed symptoms when I was 21, diagnosed when I was 24. My progression was fast at first, then it slowed right down. But now its active again, and I have internal organ involvement. Scleroderma for some people goes in waves, its active then it stops. Don't lose hope. I am 52. I use to work in an autobody shop, exposed to all sorts or chemicals. That's what I believe caused my disease. Started working in the shop when I was about 15 years old.
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