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shennen0820

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Everything posted by shennen0820

  1. My vitamin D is also low. I was taking just vitamin d supplements for a few months and was retested and found to be low yet again. I was then told that I need to also take a calcium supplement as you need this to help absorb the vitamin D so I now take the vitamin D, a calcium pill with vitamin D and a multivitamin that also contains vitamin D every day! I hope next time it will be up! Plus I am very tan so I know I am getting what I can from the sun!
  2. If you take calcium along with d, the D will help to regulate the absorption of calcium.
  3. I was told by the dermatologist that the darkened area are changes in blood vessel caused by sclero...
  4. I am also in my 30's and was recently diagnosed too. I have one child prior to being diagnosed and want to have another. My gynecologist has already sent me to a perinatologist (a high risk pregnancy doctor) and according to him the thing that bears close watching during pregnancy is the blood pressure because of the kidney issues with scleroderma; so possibly being seen weekly for blood pressure checks. I would suggest that your sister (after going to John Hopkins of course) get set up with a high risk pregnancy doctor also. You are right and there is not a lot of information on pregnancy and scleroderma. I have been on another sites and have talked to other women who have had babies with this diagnosis.
  5. Alice how long have you been on the cellcept and how long ago were you diagnosed?
  6. I do have to say in the beginning of new diagnosis (July 2008) I too was doing tons of reading just like you are and I was also driving myself nuts. I have backed off a bit on the reading and research and I try to take one day at a time, one test and result at a time, and one doctors appointment at a time. Please do get educated but try to give yourself a break from all of the research and relax. Stress makes everything 100 times worse.
  7. glad to hear that the permacath placement went okay for you...keep us posted about the photophoresis!
  8. Mine also is low and I have been taking supplement for 1 year and it was again low this year. My doctor suggested taking calcium with vitamin D, a vitamin D supplement, and also a multivitamin with vitamin D.
  9. I also developed sclero symptoms approx 5 months after having a baby...
  10. Hey Paula, I'm glad to hear the the insurance company approved your treatments. Check with Walt. I know he has been having photophoresis treatments and is from Canada I believe. Are you going to be having your treatments at Yale? I think you said you live in Connecticut as well.
  11. Thanks everyone...glad there are others in the same boat!
  12. My biopsy came back positive for morphea and the dermatologist had the report changed stating scleroderma to have more pull with getting things approved with the insurance company.
  13. Anyone have an answer to why sclero is making me look tan? If one more person comments on what a nice tan I have I may scream! I guess that may be the only bonus to having sclero!
  14. I am having the same trouble finding a rheumatologist too! I have an appointment with another one in May. Hopefully this one knows something about sclero!
  15. the dermatologist that I saw explained to me that the hardest thing about this photophoresis is finding a vein with having the tight skin! So that is why I have so many questions about this treatment
  16. I don't know about the perma cath, but am wondering about the photophoresis treatments. Have you had any done yet, if so any side effects, and any other info you can give me...please
  17. I would suggest a visit with a perinatologist...(aka high risk pregnancy doctor). Before you attempt to get pregnant to iron out details on "what if's" so you can be prepared.
  18. Sorry I can't help you with a doctor but I totally understand what you mean about doctors...I saw my rheumatologist last week for the 2nd time and I was inquiring about if there was a rheumatologist in the area who specialized in sclero and she told me no...and then proceeded to tell me she would refer me to another doctor if I would like...so apparently she did not like being questioned by a patient and is now passing me off to another doctor so I can start all over again! So much fun and they get paid so much!
  19. I also suffer from pain in my elbows and shoulders when trying to sleep...I don't know about anyone else but I like to sleep either on my stomach or side and when doing so it puts pressure on my elbows and shoulders which causes so much pain and I am constantly tossing and turning all night long, never mind attempting to sleep with enough pillows for under each arm and shoulder! I have been taking a prescriptin painreliever and and an otc anti-inflammatory before bed and it does seem to help...I try to take it when I have had like one or two very bad nights and need to get sleep! I think that when we are sleeping because our joints are not being used they just stiffen up and that is worse then during the day when we are using them...WHO KNOWS.
  20. I live in Connecticut and have gas for heat my home...I have called Yankee Gas who is the supplier and they do not offer any discounts for anything...the only thing they offer is a medical protection so that the gas would not be shut off in case I could not pay my bill...
  21. Just wondering if anyone has tried acupuncture and what symptoms were helped by it...
  22. Sed rate is an indicator of inflammation...
  23. Glad to hear that everything went well for you...
  24. I also have TMJ...remember that our jaws also have joints and just like elbows/knees are affected so are the joints of our jaws...Try to stick to a soft diet...like mashed pototoes, macaroni...stuff that is easy to chew...until it settles down. It seems to come and go for me and when it flares I try to stay on the soft diet until it settles and it usually seems to help...good luck
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