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About Tully

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  1. Hello general practitioner, My first symptom was the tightness and slight curving of the last joints of my fingers. Within two years, they were fully curved. I was fitted with splints to keep the straight at night, they didn't help. They may have slowed it down, hard to tell. I was working and lived alone, so I could not wear them all the time Tully
  2. I have found it is better to be warm and almost hot. My biggest issue is keeping my hands warm. I wear gloves most of the year. My core body temp doesn't fluctuate but once I'm cold, it's hard to get warm again. Even with the warm Georgia summers, I usually have a blanket over me. Can't stand for the air conditioning or fan to be blowing on me.
  3. Hey dimarzio, Well get used to the fact that most people and some folks medical field have no clue what SD is, what it is doing to your body and how cruel and deadly this disease is. Over time, I have found it easier just to explain it as a form of arthritis and just leave it at that. You'll learn how to spot the difference between the ones that care and the ones that are just nosey. I would suggest you go to a specialist that deals with SD a lot. As you've noticed, a lot can change in 6 months. I kick myself a lot for not getting the bone marrow transplant done sooner. Also, if I
  4. Hey dimarzio, When I was officially diagnosed with diffuse SD, the doctor pinched my skin in 17 spots over my body. A score of "0" for normal and a "3' for tight. I scored 24, anything over 17 he considered diffuse. That was Sept 08, when I had my bone marrow transplant Dec '10 I scored a 46. My current doctor doesn't keep score but I would estimate I'm down in the low 30s now.
  5. Hello dimarzio, Like you, when it was suggested I might have scleroderma , I was surprised at the "statistics" and how much I did not match them. Male, 45, good shape, non drinker, non smoker, no drugs..... The first indication I had was the tightness and pain in my hands. Within 5-6 months, the tightness was basically from head to my toes. So, what started out localized, quickly became diffuse. I just recently found/joined this forum and my intro thread is ''diagnosed on Sept 29, 2008". I hope yours stays localized, because it is a game changer if it goes to diffuse. And like you, gettin
  6. Amanda, Thanks for the info. No way am I going to go through that just to have straight fingers that don't do anything. I think that procedure would make a bad situation even worse. Hope everyone has a good time tonight, be safe. Lets have a great 2016
  7. Hello MB, Sounds like your symptoms are very similar to mine. I started seeing a general practitioner in December 2007 and then a rheumatologist in January 2008. By June, he was pretty sure I had scleroderma. He sent me to a specialist and on September 29, 2008 I was told, "You have 2-3 years, get your affairs in order." So to answer your question, Yes, it's bad, Yes, it changes your life and everyone around your life. Medicines will now be the norm. JUST KNOW, not all is lost. Look at me, 7 years later, I'm still here. Like you, I was active in sports, motorcycles and chasing a 6 year old s
  8. Hey general practitioner, here's what I got back this morning I looked in your med record, lab history. The SSc type labs that we did with corresponding results are... ANA - negative Double stranded DNA antibody - negative Scl-70 - negative SM-Rnp - negative Smith antibody - negative Those are the only ones I see. These were done over 7 years ago and may have different results now. Hey Jo, thanks for the info. Busy day for me and I pick up my son tomorrow, so it may be a day or two before I get to the sites listed. Thanks
  9. Hey general practitioner, sorry, can't answer that question. Searching the hits on Google was not helpful either. I'm still in touch with my case manager in MUSC, I'll ask her tomorrow. So, why do you ask? Are there different treatments related to them? I did see something I had not heard before, one of the studies I was looking at concerning the Anti-U3 RNP autoantibodies said that the skin may loosen up after a few years. Has anybody seen this happen? Mine has to some degree, but I thought/think it was due to the BMT not the disease releasing its grip. Does anyone know if there's a procedur
  10. Back again. I understand what you guys are saying. But reading a few of the stories on here, Amanda's blog, I realize some/a lot have a ton worse than I. It was 11 months from the first symptom to the "official" diagnosis. I did not have to deal with the years of frustration some have gone through. When I was first diagnosed, I learned very quickly, not to look at the pictures on the web. Beyond scary. Seeing the pictures on this forum and knowing the name associated with them is gut wrenching for me. I've had a few digital ulcers that were maybe 5 mm in diameter. Nothing compared to what I've
  11. Amanda, I read your blog and can related to some of it. Especially the Cowboy, I'm to lazy to type the whole story but like you I wanted to kick him in the britches! This effects of this disease are so varied, it is scary, Reading your story and a few others on here, I sound like a whiny brat, While my life has changed dramatically, I still have my independence and can take care of my son. I have friends that are careful around me when they are complaining about their aches, pains or life in general. They know mine are so much worse. Now I'm feeling the same. Besides the skin, c
  12. Hello QF, I just joined the forum today. I hope you're doing OK these days. To paraphrase Stuart Scott, fight when you can and when you're too tired to fight, sit down and let others fight for you. So hang in there and take it one step at a time. As for me, exactly 5 years ago today, I was in Duke getting a bone marrow transplant. It didn't take long to figure out that being worried about "what's next" was only adding stress and dread to a bad situation. Everyday is struggle, but everyday is another day with my son. It took me a while to get used to the fact that, I'll never get back
  13. Wow, positive, upbeat, successful outcome are not words I associate with SD, the SCOT trial or my current condition. To me, this disease is cruel and vicious and we need to fight it with equal ferocity. Make no mistake, I'm glad I made it thru to the other side, but I also know my quality of life is pretty poor. Can't participate in my sports, ride a motorcycle, have a relationship, drive a stick or even operate a game controller to play video games with my son. But, I am alive and still kicking, just not as hard as before. Yeah I'll admit I'm maybe a bit more cranky than I used to be. No
  14. Hello Everyone, new member here. I just found this forum while looking at information about biologics. Here's the very condensed version of my story. Back story, I'm a forty-five year old male, nondrinker, nonsmoker, no illegal drugs, active in various sports, rode motorcycles and drove a CJ7. First noticed symptom was in December 2007. After a few weeks seeing a general practitioner, I was referred to a rheumatologist. They didn't think it was rheumatoid arthritis (RA), but treated me for it anyway. After a few months, the symptoms were getting worse. Hitting a golf ball cause
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