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Kathy D

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Everything posted by Kathy D

  1. Hey Ladies! Yes, confusing sentence! And yes, I have been officially diagnosed with Systemic Scleroderma, 710.1 I will clarify on my next appointment in late September, but the way I interpreted it is that I am past the early stage of scleroderma. I ran this past a friend of mine who has a PhD in nursing, and that is what she thinks too. Can you blame for hoping it means I'm past the early stage? That might indicate slower progression. Thanks for your thoughts! Kathy
  2. Hey Shelley! I ask because the skin just below my cuticles on my ring fingers and pinky fingers is smooth and shiny, it has been for some years now. The reason I am questioning it again is because of a phrase in the doctors report from the Sclero Specialist I saw last month. It says: "Raynauds phenomenon, puffy hands, and early dysphagia, in the presence of Scl-70 antibodies rule OUT EARLY scleroderma" So pondering how long I have really had this and was wondering if my fingers were in the beginning, middle or end. I know we cannot predict this disease but I can't stop my self from wondering smile.gif Thank you for sharing what you know!! Kathy
  3. My finger is going dead

    I am so sorry to hear about your finger. I heard there was topical cream that contains an ingredient to dialate blood vessels, might be worth a call to the doctor. I am sorry I dont remember the name of the cream but I think it has nitroglycerin in it. I would rather be preventive than wait 10 days like they asked you, its not their finger that hurts! Good Luck KD
  4. Most of the toothpastes on the market get very foamy and really bother me in the back of my mouth (throat). I have put up with a terrible gag reflexs for the last few years while trying to brush. I found a new toothpaste that is "low suds" I guess the idea is that is stays in contact with your teeth longer while brushing but it greatly helped since it doesn't get so foamy and trigger the gag reflex in the back of my mouth!! It has baking soda in it that I heard can be abrasive, but I'm not worried about it too much, just thrilled that brushing my teeth isnt such and unpleasant ordeal anymore! Kathy
  5. Sclero Summer Slumber Party

    Today was so much fun! Thanks for the party-----Is it ok that I was in my pj's even though it was the afternoon out here? KD
  6. SCL-70

    Hi Lisa, My first 2 tests were from a lab with reference ranges <1 = negative My last test was at a lab that showed <20 were negative I have also seen tests that say <100 = negative It all depends on what test your lab uses, you need to refer to that particular lab's reference range. Can you go back to the lab and sign a release to get your results? Sorry, I know this is clear as mud :( Hang in there sweetie, waiting is so hard and I have done alot of that in the last year but I survived, know you will too :) (((HUGS))) Kathy
  7. Saw a Sclero Specialist last week, all the tests except scl-70 are back (how convenient). ANA is now 1:640 Speckled (2 previous tests were 1:160 Homogeneous) Hmmmmmm CRP is now elevated, previously high normal Anti-CCP is now normal, previously elevated AST slightly elevated What a crazy disease :) Kathy
  8. New Round of Bloodwork

    Hi Westcoast, I was giving methotrexate pills, hope they work :)
  9. Disability Question

    Hi Craig, I was told that obtaining disablilty is usually a lengthy process, so get started on it sooner than later. I dont know if it differs by what state you live in, but in my state there is a 3 - 5 month waiting period after you apply until you get decision, either accepted or denied. Good luck Kathy
  10. New Round of Bloodwork

    Received the call this morning from the doctor, how nice to hear from him personally :) Scl-70 is 111, or high, normal is <20 My first Scl-70 at a different lab had different ranges, it was high at 8, normal <1, wonder what the difference is, it would be nice to compare apples to apples. He also mentioned that my ANA had 2 patterns, speckled and nucleolar though the nurse originally told me speckled only, he said they ran it twice. Starting Metho in a few weeks, hope it helps. Kathy
  11. Question for you guys

    Hi Piper, I used to run public pools and it is pretty much impossible to catch a bug from the water. It is very possible to catch a bug from touching the door handle while leaving the facility though, or touching the banisters getting out of the pool, or even the key from the locker if you rented one or a sneeze from another in the showers if you use them............ I hope this is a short lived bug for you :) Also take take a look at any meds that you have that you might need to take on a full tummy :) Best, Kathy
  12. Technical Issues: Please repost messages

    Well Said Jefa, I couldn't agree more, thank you Shelley.
  13. Hope you have a fantastic day :) (((HUGS))) Kathy
  14. Night Sweats

    I drink full glass of water with medications at night, but wow, depending on how long the night sweats (sometimes most the night) I want to drink 3 more glasses in the morning! Do any of you experience this? PS, we recently bought a new mattress and I am so glad I bought waterproof mattress pad for it. :) Kathy
  15. Night Sweats

    Thanks Ladies :) I will definately bring it up! I thought a few years ago it was from Paxil, but they increased as my RA and Sclero symptoms came about, guessed I was having a triple hit of night sweats from all 3! Good news is I see the doctor in 12 days, so will I will address it. How funny I havent been asked before and I "assumed"......... Thanks for the replies, ((HUGS)) to all! Kathy
  16. blood tests

    Any news on your friend Lyndylou?
  17. Good Morning Everyone, hope this message finds you well. Fatigue, brain fog, stiff RA joints, chronic fever, puffy swollen fingers and swollen neck/jaw glands & Raynauds kicked into high gear for me around 2007-2008. Today my pinkie and ring fingers are smooth and shiny below the cuticle, more noticeable in morning light while enjoying coffee. I get a few itty bitty tiny droplets of sweat on the shiny part (caffine?), very distinct looking. Flashback to 1999, I remember seeing the SAME EXACT changes on my index and middle fingers. That's 10 years ago! My index and middle fingers now have thick cuticles and the skin below that is course and grainy and I can still bend and straighten them. (haha, I kept wondering why my step mother kept giving me manicure kits for holiday :) ) I also remember moving into this house in November 1993 during a Rocky Mountain winter. I was trying to help my husband bring in our wood kitchen table and my fingers were so swollen I could not lift the table for more than a few seconds at a time. I was in college at the time, remember walking across campus and my hands or feet would get puffy swollen and red and would burn and sting......Wow, I have had Raynauds for alot longer than I realized, didn't see a doctor about it till I got digital ulcers last December. I bet you all can remember some odd symptoms from years ago too? They just didn't seem important enough to look into at the time...... So now I find my self in the "bargaining" phase, again. If in fact I have had this disease for 10 years that would mean I am past the first 5 critical years, right? Thanks! Kathy
  18. Wow, started it yesterday and headache two days in a row. Insert says headache will go away in a few days but it hurts now. Already taking prednisone and nsaids......... What did you all do?
  19. What can I do for a Procardia headache?

    Thanks Shelley! For better or worse I took plain aspirin last night and it worked! No headache so far today :) Now it is very hot here, but I think I am getting better results for Raynauds with procardia than I was with amlopidine, crossing fingers and toes. (((HUGS))) Kathy
  20. Rheumy Appt 6/18

    Hi, Hope this finds everyone well :) Rheumy suggested Methotrexate but also mentioned it may make my RA nodules worse. Later in the appointment he again mentioned seeing one of the specialists listed on this site in Denver, I was able to tell him I already had an appointment for July 13! At that point he said he would prefer speak with the specialist, after my visit, before starting me on the metho. He gave me a scrip for Procardia as the amylopidine had nil to minimal results on my severe Raynauds. He also gave me scrip for Provigil for fatigue but my insurance will not cover it, so I likely will not be taking that (as I do not have ADD or Narcolepsly which the drug is approved for). I mentioned Prozac as a vasodiolator and he said he had heard of it but thought the Procardia was a better next step. Thanks for all the support and hugs :) Kathy
  21. Hi Nan, I am new to this and it appears pretty early in the disease. I have one patch of thickened skin between 2 knuckles and it is growing slowly. It appeared out of nowhere......... My hands and feet have been very swollen for 9 months now. I am concerned about my fingers and knuckles though, from the last joint to the cuticle on all of them and across my knuckles is now smooth and shiny. My cuticles are all red from tangled upset blood vessles. The pads of my fingers are thick and hard from slow healing dead skin from digital ulcers I got last december (before I was diagnosed), but as they heal my fingerprints are returning:) didn't realize it would take 6 months for the ulcers to heal, will never help stranded motorists in the snow again but instead call for help and preserve my fingers:) Cheers to skipping the "S" Kathy
  22. Rheumy Appt 6/18

    Thanks friends! I have been on plaquenil for 100 days now with minimal results, hopeful that it will eventually kick in! I am definately mentioning prozac to Denver Specialist, as I may be able to replace both paxil and procardia with only prozac and eliminate one med! I have to brag though, I can skillfully do 8 pills in one swallow! Would be nice to only need 7 pills though :) Kathy
  23. Do you keep asking "how did I get this?"

    I have been thinking about how I got SS and wonder about this...... From age 11 to 19 I worked as lifeguard/swimming instructor etc. at our local public outdoor pool every summer. Part of the filtration system for the water was a huge cement vat in the ground with many filters that very micro fine silica sand (dust) would stick to. The silica dust covered filters would gather contaminants as the water was pumped through it. We had to replace this sand every few weeks (backwash), drain the vat and spray off the old wet dust. Then refill the vat and add new micro silica dust one coffee can at 5 minute increments till all 200 pounds were in there and gathered on the filters again. Of course this all took place in a small confined pump house with little ventilation................ Food for thought, KD
  24. blood tests

    Hey Lyndylou! How is your friend doing? Was the ANA or any of the DSDNA positive? Hope you and her are well:) Kathy
  25. Raynaud's

    My fingers, knuckles and toes are blue/purple and cold to the touch 80% of the time. Even in hot weather. Sometimes I get blotches of the blue/purple, like upper index fingers middle pinkies and index knuckles......very odd looking.
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