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Everything posted by LoriNC

  1. Rosa, I have had them too and found the nitrocream applied 3 times daily along teh fingers with the ulcers and at the webs of my fingers has cleared them up. My rheumatologist dicated that if the nitro cream did not work Viagra was probably the next step. She said insurance usually balks at viagra, but eventually caves after other treatments have failed. I also apply Oover the counter "neosporin + pain" ontop of teh ulcers for some relief Hang in there Lori
  2. Helen, I also have diffuse and significant curling - unfortunatly all the information that I have received from my OT,PT and rheumatologist is that the hand therapy and splints will slow the envitable and the drugs may relieve some of the skin tightening and underlying fibrosis.... Not a rrosy picture, but I cling to the fact that evryone's body is different and maybe I will gt improvement or hopefully a complete reversal. Positive thoughts, positive actions and we may be different than the norm! Lori
  3. Ann, Funny you should mention cholesterol, i asked my doctor about it - my number since being diagnosed have from 130 to 215. i was flipping out when he gave me the numbers, asked him if it was connected...He basically said who know - he says he treats my symptoms as the arise and figures anything is possible and all changes in my symptoms, blood # should are reviewed...bottom line he told me not to worry, but everyone is different. personally I think my rise in cholestorol #'s are directly related to the changes sclero has forced on me - lifestyle, food and environment. lori
  4. My greatest invention for improving my daily lifr - my 13 year old son - I call him fingers. I bought cheap intercoms from an electronics store and installed in the upstairs and garage, that way my 13yr old fingers re readily available. I use the good grips tableware as I cannot hold regular silverware. I use an electronic toothbrush that has a large handle easy to hold base My mother made me mitts in a simialr shape of oven mitts to keep my hands warms and safe outdoors - my fingers have curled so much that normal gloves just don't cut it. Cur styrofoam - really thick to fit around was
  5. Heather, When I was placed on cellcept it was with the intention of going to 3G if my body tolerated cellcept. Lori
  6. Gwen, I understand your concern that your condition may worsen while you wait for the drug to take effect, I felt exactly the same way. I tried really hard not to focus on it(ha ! Ha!), at least daily I figure out how long I had been on cellcept. No real advice here, other than I was able to take that daily concern and turn it into a time of personal meditation..... Initially I was put on cellcept to try to stop or slow the aggresive progression of my sclero. I developed mild lung in involvement two months into the drug and 7 months later my lungs have stabilized with no scar tissue
  7. Janey, I can tell you have been on a roller coaster but....Your husbands interest and desire to be there for you seems to be the highest point on your roller coaster ride. Give your hubby a great big hug for me!!!! Lori
  8. Thanks, yes it is ahuge relief and the best present my family will receive this year! Patty and memeto2, I have digital contractures with skin involvement up to my shoulders, feet, thighs and calves. Along with mild lung involvement. I have been sick since April 05 - I quit work March 06. What a sad time that was! I have to believe, My doctors support in her records and recommendation were key to my approval, as well as my detailed answers on the form itself. I had my husband type in excrutiating detail how difficult evryday tasks are. For example, I included the exact way
  9. Hi All, There is usually a lot of questioms regarding disability approval so I wanted to share that I applied in september and was approved ttoday!!!!!!!!!!! What a relief. Now I can begin the maze of medicare and prescription drug coverage. Wishing all who try for disability the swift process that I experienced! Loi
  10. Irene, I am so sorry to hear you are having so much pain in your shoulders. When my skin thickened on my hands I experienced puffiness and sensitivity to touch, howevr when it tighten on my forarms none of that was noticeable. The biggest symptom I have noticed over large muscle areas such as the thighs was ITCHING!!!!!! Goes to show ya that every Scleroderma case is different. It is a good thing you are seeing your rheumatologist today! Lori
  11. My rheumatologist gave me nitro glcerin cream to rub in between my fingers, near the ulcer, around knuckles the feel like one is developing, and on my wrists. She also told me to apply neosporin to the ulcers. Has anyone done that? Does it work? Has anyone used nitro cream? if so how many times a day did you apply? I asked about viagra and the Dr. said the insurance company will be more likely to appprove if we show we tried the traditional medicine first. Thanks Lori
  12. Sherill, Your post gives me hope that my hands might become a bit more useful. If you could post pctures that would be great. I rarely meet people with extensive hand involvement early in the course of the disease. Are you on any immunosuppresants? Thanks Lori
  13. Irene, Your desription of the involvement of your hands and diagnosis of carpal is just like my history. I wor hand splints evry night for 2 years and wore them all day while at work - really hard to type but you get used to it. When I only had carpal tunnel I reaped great benefits from hand therapy. The best thing to do is to religously perform your excercises and wear your splints. Once the extensive swelling started I started on the adventure of diagnosis and 3 months later Scleroderma was diagnosed. I have diffuse scleroderma nd in the words of my rheumatologist - It
  14. memeto2, I use a pain management clinic and they have worked wonders. Find apecialist, even if you have to drive a bit. A specialist xan support your disability case and may improve the odds. The key I hve found with disability is to ensue your Doctors notes are detailed enough and have the actual pharse in the " patient is disbaled" I think ss does not kick in until 6 months after you quit. does your company provide short term disability - sometimes that will buy you 90 days of reduced income. The difficult part of the disbility approval process is that it takes so LONG!, howe
  15. Jackie, I used a parafin wax a lot last year and it worked beautifully. This year however my skin has progessed and is much tighter and more waxy looking so now I use bag balm on my knuckles and at night I cover my hands with cotton socks. I was given a medication to improve circulationwhen my knuckles started cracking, the name escapes me. If you would like the name private message me and I will have my husband dig out the prescription bottle. Lori
  16. Sweet, Get those PFT's, six minute walk test and possibly an echcoardigram for a bssline of comparison, if no involvement then you have agreat baseline for latef comparison.. My Dr is a rheumatologist that studied at MUSC with the sclero DR's. She requested the above tests immediately and has schedule some evry 3 months while others once a year it just depends which way my disease wants to travel. Take care Lori
  17. Jennifer, I was diagnose Sept 05, with diffuse scleroderma. My first symptoms were swollen and very painful hands beginning in April 05. My symptoms have pogressed so fast that I had to quit work in march 06, my Do cor wanted me to quit in December....but I am stubborn. Currently all 10 finges are contracted at the first knuckle with one digital ulcer. My forearrms and upper arms are so tight that it is nearly impossible to draw blood - I hate doing that so I put it off... My thighs, calves and ankles are moderatley involved. My lungs have spome fibrosis and I have no signs of PAH. I
  18. Pailine, Itching has always been an issue since I was diagnosed with diffuse a year ago. I use an oatmeal based lotion that has a small amount of menthol added. The menthol cools and really soothes the skin. i take AtArax at night, allegr and and benadryl during the day. I have also found as my skin has tighetend over my knuckles and wrists the application of bag balm really keeps the skin more hyrdrated. lat winter I used a humodifier in the main house which really helped ALOT! Take care Lori
  19. Sweet, I am in the process of applying for SS benefts. I completed the paperwork in July and have Doctor appointment witha doctor chosen bt SS. I don't know what to expect, but will keep you posted. I have read that 50% of first time applications are denied, I'm jopinh to be in the lucky 50%. It is vital to try and get disability - beceause of the way SSbenefit amounts are calculated at retirement. if you are disabled, per SS, your earnings/employment clock is frozen. If you are not disabled and you continue to work fewer and fewer hours or quit all together the latest earnngs y
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