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Everything posted by razz

  1. Barbara, I'm sorry to hear you had to go the dentist for this pain in your face. I've had terrible toothaches and know how :blink: painful those can be. In your case, since that was ruled out, I agree with jefa's post that it can be neurological. Did the dentist give you pain medication for pain relief until you find out what this is? I found the only thing that helped me was pain medication. I hope you get better soon and the doctors find out what you have! Sending my best wishes to you, Razz
  2. Snowbird, Ozzy69. Margaret, I am glad you watched the video. It's great to see results from other scleroderma patients who have participated in the SCOT who are doing well. It is proof that the stem cell transplant with partial radiation does help patients return to a better quality of life. Hugs, Razz Nine years post autologous stem cell transplant SCOT study and I'm doing very well!
  3. Danielle, I am glad you were accepted into the SCOT study and look forward to hearing how you progress. Everyone has their own views on the pros and cons of each study. The most important thing is being positive and proactive in your improvement. I've heard great things about the doctors and staff at Duke and I wish you the best results! Sending you positive healing. Hugs, Razz Nine years post autologous stem cell transplant SCOT study. I'm doing great with NO adverse side effects.
  4. Hi everyone! I just finished watching this recent Youtube video. It is an excellent video profiling patients who have participated in the SCOT study where they discuss their experience. It also includes doctors who explain the two different procedures, the cyclophosphamide infusions and the stem cell transplantation. The people who put this video together did a fantastic job. Click here to see it. . You can find this link and more about the SCOT Trial at this ISN link. Scot Trial. Hugs, Razz
  5. Hi Margaret, I agree this can be confusing. These tests are used for diagnostic purposes. Although two patients could have identical Scl 70 scores, they could display different symptoms, severity and progression. The webmd website my doctor recommended should work, it is www.arthritis.webmd.com/antinuclear-antibodies-ana. Warm hugs, Razz
  6. Nina, Your situation really touched me and I wish I could do something to help you. There has to be a specialist in the upper northeast area that can offer you another option or form of treatment. Maybe a search on the internet and making phone calls will turn up specialists familiar with treating G.A.V.E. conditions similar to yours. You have every reason to be concerned. I am hoping the best for you and I will be thinking of you. Many Hugs, Razz
  7. Hello everyone! Barefut posed two questions in my last post entitled Costochondritis. I promised I would e-mail my doctor and ask her if she could clarify the scores in layman's terms for me. She was so kind to reply with the following: "Basically, an ANA test is given when an autoimmune disease is suspected. It is pretty non-specific, meaning that the presence of a positive ANA does not tell us much more than that the patient has auto-antibodies. Additionally, the level of the titer does not really correspond with disease severity or progression. Some patients have a positive AN
  8. Judy, Thanks for your kind words of support. Truman, I also thought it was a strain or maybe I bruised myself, and I couldn't figure out why it affected my breathing. I'm glad you found something that worked! Hugs, Razz
  9. Jude, This is such a beautiful story! Loved it! Razz
  10. Wohali, I would like to get a better clarification on the question of ANA testing, as well as scl 70's. Sorry to hear your hiking has been put on the back burner. I hope you see some improvement and feel better soon. aka79, I think we need a better understanding of what the purpose of these tests are and how to interpret them. My chest pain has gone away and I do feel much better. Thanks aka79. Nina Lynn, Definitely keep us posted on how your lung function testing goes. I hope they stay at a high percentage of function ability. Hugs, Razz
  11. Hi Barefut, These sharp pains can be finicky. I'm so glad when they're gone. I've also searched the internet for information on interpreting SCL 70 and ANA readings and didn't find anything. My doctor did say the SCL 70 determines the degree, but did not mention whether that means more involvement or more rapid progression. I would have to call her next week and get a more definitive explanation on whether doctors ever interpret this reading as an indicator of diffuse scleroderma. Hopefully my doctor can direct me to a website or fax me information from her medical manuals. She
  12. Hello Michael, What a lovely idea to surprise your wife with a sauna! I am so sorry to hear of her diagnosis. You are so thoughful to inquire if it would be a good idea. Personally speaking, I do not have a sauna but I can say which water temperatures are comfortable for me. I have tried warm water aerobics and the warm water temperature has very relaxing benefits. If I'm exposed to hot water temperatures, this usually leaves my skin dry which then leads to even more itchy skin. I'm diligent about avoiding hot showers and I do keep a good lotion handy especially in the winter mont
  13. Hi Christy, I'm going to add this one to my folder too! (Hope you're keeping warm from those northernly Indiana winds.) Your Illinois neighbor, Razz Hi andyko, I am feeling better and plan on staying close to home for a while. No strenuous activities in sight for me. I'm sorry to hear you've been dealing with this pain and I'm wishing you a rapid and speedy recovery. Hugs, Razz
  14. Sweet, You're not kidding when you say Ewwww! I knew this pain was different than before because I couldn't breath on one side and it really hurt. Thank goodness it wore off and I'm feeling better. kellyA, I'm sorry to hear you have something similar though I'm not sure if it's the same condition. Does NSAID's and a heating pad help? It does sound like you can experience this type of pain long before an official diagnosis is made. CraigR, I can relate to the sprained ankle feeling. Not a good feeling at that. Thanks for the analogy! I like when doctors explain thin
  15. Hi everyone! Last month I developed a sharp pain on the middle right side of my rib cage. It came on out of no where. I woke up one morning and there it was, this sharp pain where it even hurt to breathe normally. I thought, now what? I don't want to feel like a hypochondriac but sometimes it's hard not to worry. I thought at least it's not on my left side, because that could be a bad sign for sure. Because I was preparing for a special occasion I ignored it thinking my rheumatologist's appointment is right around the corner anyway. After a few days, the pain leveled off, came
  16. JohnJ, I'm glad to hear you have an appointment set to see a rheumatologist. You are on the right path asking what questions to present at your appointment. Everyone's given you great suggestions, especially finding out how much experience he has with scleroderma. Good luck with your appointment and let us know how it goes. Take care, Razz
  17. Coweyes, Welcome to our ISN forum! I like your name, very catchy. I have had a couple of ear aches but I think they most likely were connected to my tooth aches. As soon as my tooth aches went away, so did the ear pain. As for twisting fingers, my index fingers both have twisted slightly to the left. This I definitely I credit scleroderma with. I am glad you find this forum and are getting good treatment from your doctors. Hugs, Razz
  18. JohnJ, I watched that program with awe and pride for the ultimate sacrifice our soldiers give each and every day. I was so happy to see something special done for our Heroes. I know you are so proud of your brother. I watched and listened to his amazing story. His courage and tenacious spirit is inspiring! I wish him continued healing and his family many blessings! Kindest regards, Razz
  19. Lizzie, It's okay to rant regardless of your stiff upper lip upbringing. We all have experienced feeling like we have to grin and bear it. Your boss sounds like she could use a lesson in compassion. Just one day in our shoes would change her tune. But I wouldn't wish that on anyone, not even a bad boss. I think the people that really hear us and understand us are right here. You can say how you feel and we know what you mean. Other people might think Oh she's feeling pain but it can't be that bad. Or, sometimes they don't know what to say. Like you say, a simple nod or is
  20. Chefkat, I feel your pain and frustration at wanting to do so much yet having to deal with barriers and obstacles. Hopefully a couple of the applications you completed will pan out. Keep applying for as many scholarships as you possibly can. Unfortunately I haven't heard of a scleroderma scholarship but there has to be scholarships for autoimmune illnesses, which is a disability. You are dealing with being a young mother and having scleroderma symptoms. That is a lot to deal with. Don't be too hard on yourself. Even though you can't control all of your physical ailments, you c
  21. Christy, I wish this disease would settle down and take a break, maybe go on vacation. My rheumatologist appointment is this Tuesday and I'm not looking forward to going. I hope the rest of your appointments go smoothly! Great news on your PFT's. That's fantastic! Hugs, Razz
  22. Welcome Little Red! I am glad you found us! I don't like the cold winters any more either. I was usually the one taking my kids out to the highest hills with our round discs slathered with vaseline ready to come down like rockets off those hills. Now I shudder at the thought of snow and ice.(((( :blink: )))) And you're right thank goodness we're not farm animals, I would be gone for sure! It seems like we all have experienced the difference between a good doctor and a mediocre doctor. One who cares and one who's indifferent. One who's informed and one who thinks he knows enou
  23. Hi Leonidas, Welcome to our forum! I am also sorry to hear your mom has diffuse scleroderma. We would love to hear more about you and your mom. We have a great group of supportive people here. I hope your mom is feeling well and getting treatment for her condition. Take care, Razz
  24. Ann, I like watching old black and white sitcoms, like I love Lucy, 3 Stooges, Laurel and Hardy or Shirley Temple movies. I like the 60's and 70's sitcoms, Three's Company, Happy Days, Laverne and Shirley, Bewitched, Jennie I love all the Vacation movies with Chevy Chase, especially the first one, very funny! My favorite holiday movie is A Holiday Story. For fun I like watching my collection of Disney animated videos and Disney movies. The comment about coloring with crayons is great because I also like doing that. It takes me back to my younger carefree life. When I used t
  25. Christy, Ahhhh, to be 21 again and know the things we know...We just keep getting smarter and better! Hugs, Razz
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