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LMS

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About LMS

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    Bronze Member
  1. Hi Everyone, I have pulmonary hypertension and my recent CT lung scan shows no fibrosis. My DLCO is decreasing based on a recent PFT. My pulmonologist is very experienced in treating lung disease in Scleroderma patients. I can't help but think I should probably be on something for lung fibrosis eventhough nothing is showing on the scan. In other words does a doctor treat the fibrosis before or do they wait until fibrosis is visible on a scan? And what is the probability I will develop lung fibrosis given that I already have pulmonary hypertension? Thanks. LMS
  2. Hi Everyone, I was recently diagnosed with Sclero. I have been having a lot of wrist pain and my range of motion seems to be decreasing. I have a lot of swelling in my hands and it seems to be progressing to my wrists. When I first told my rheumatologist of the symptoms she said it was probably carpal tunnel and rx a rigged wrist splint for my left wrists which has been causing me most of the trouble. Now I'm not so sure, or is it both carpal tunnel and progressive skin? LMS
  3. Hi Everyone, My rhemy diagnosed me this week. Eventhough, I have the centromere pattern she said my symptoms are behaving more like diffuse. I am being started on plaquenil and physical therapy. My pulmonologist diagnosed me with pulmonary hypertension which will be confirmed by right heart cath. They both seem very optimistic. I know PH isn't the death sentence it used to be but the research states the combination of Scleroderma and PH leads to a poor prognosis. Thanks everyone. LMS
  4. YFChoice, Thank you sooo much for your 2cents + inflation. It was truely inspiring. LMS
  5. Thank you everyone for the support! I am feeling much better. The take home message for me is to slow it down. A natural control freak I tend to want to get to far ahead. I was able to make it through today (Saturday) because I focused on what I needed to get through today. I will worry about what I need to make it through tomorrow when tomorrow comes. LMS
  6. Medical Records

    Hi Everyone, I keep very detailed records as well and highly reccommend it for everyone. Besides, I get tired of answering the same questions from different doctors. When the questions start I pass over my book and my doctors love it. LMS
  7. Truman (Linda) in the hospital

    Hi Linda, Get well real soon. You are missed! LMS
  8. I feel so betrayed by this disease. Before I got sick I was in the best shape of my life. I worked out for 45 min. 5X a week and biked 6 miles a week. I ate all the right foods. I fell into the trap of thinking my only concern (excluding a traffic accident) was heart disease. No one warned me about scleroderma! No one ever told me that all the excersing in the world will not protect you from scleroderma. My lung capacity is decreased to the point where if I try to walk up and down the stairs in my home I end up huffing and puffing. It would take me 30 minutes to do the 6 minute walk test. Needless to say I put on some weight. Sometimes I think I tell myself if I get fat maybe the scleroderma will go away. I figure if my disease keeps progressing the way it is the gi sysmptoms should start soon and I could potentially lose 40 lbs in 2 months. Thank you for letting me vent. LMS
  9. I am highly positive for the centromere pattern. I know this is indicative of limited, but my sympotms are occuring quite rapidly ie Raynaud's, skin thickness on hands and feet, skin tightness on face, decreased lung function DLCO, FVC, TLC. all of my symptoms occurred within weeks of each other. Is it possible to have diffuse disease even with the centromere pattern? I am African American and I know based on the reasearch I have done the disease tends to be a little more aggressive. Please help. My Rheumotologist and Pulmonologist are very close to a diagnosis but want to wait for a few more tests. LMS
  10. PFT today...

    Thand you Everyone, I think my pulmonologist is concerned because this is my first PFT and represents my baseline. If my baseline is abnormal the chances of me declining further is very possible. Loren
  11. PFT today...

    I don't know what to think. My pulmonologist told me my lung capacity is decreased. My results are: FVC 69% TLC 66% DLCO 76% What is considered normal? I have to go for a CT scan of my lungs and a 3D echo. He talked to me about the possibility of PAH. I think he is more sure than what he was letting on. Does anyone know what the normal values are? Thank you Loren
  12. PFT

    Janey, I am scheduled to have a PFT and pulmonary consult next week. I am curious to know more about the symptoms. I am experiencing shortness of breath on exertion and at rest. I have developed a very hard dry cough that feels like I have a bad chest cold with no phlegm, and of course fatigue. I can't do the usual activities without feeling out of breath. Are my symptoms the typical ones that other patients experience? And what is the difference between alveolitis, ILD and PAH? Thanks. Loren
  13. burning skin

    Hi Jerrine, I am currently being worked up for Scleroderma. I haven't gotten a firm diagnosis yet, but my rheumatologist says the signs are pointing in that direction. I am also experiencing the burning sensation on the skin of my hands and face. The burning sensation is really pronounced when my hands are swollen, which is often. Because of the burning on my face I only wash my face one time a day instead of two. I just wanted to let you know that you are not alone. Good luck. Loren
  14. pft

    Hi Yogabear, I was wondering if you could tell me your symptoms. I am scheduled for s pft this Friday and a pulmonary consult next week. I have shortness of breadth at rest and excertion as well as a hacking dry cough. I have had the s.o.b. for about 4 months and the cough for 4 weeks. Thanks Loren
  15. I am currently being worked up for a diagnosis of Systemic Sclerosis. My ANA titre is 1:640, anticentromere pattern. I know from the research I have been doing there is a strong indication for Limited. However, I am experiencing a lot of changes more rapidly particularly in my hands and skin. I have Reynaud's but insted of that symptom lasting more than 5 years (as the research indicates), I am feeling skin changes in my hands. It feels like my nails are seperating from the nail bed, itchy fingers, tightness around both my thumbs, pigmented skin appearence on my face and hair line as well as shortness of breath to the point where I can't do certain activities anymore. Also the typical aches and pains that go along with this. Now that I have given you some background, my question is: Is it possible to have Diffuse Scleroderma with the anticentromere antibody only? Also, I have an appointment with my 2nd rheumatologist on May 12th. Loren
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