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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 go to bed within 3-4 hours after eating, I take some antacid or the reflux will get me
  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, getting a good night sleep has become impossible without medicine, that I refuse to take. Be careful about keeping your hands and feet warm and dry. The Raynaud's will cause ulcers and they hurt a lot and are slow to heal. Being stiff and achy is just a normal state for me. The cause of SD is a mystery. I've read that the Choctaw Indians have a higher than normal rate than anyone, but most cases are localized in the legs. My great grandmother was full blooded Choctaw. I've read that trichloroethylene can be a contributor, 20 years before my first symptom, I worked for a company that used it by the barrel. And I would sneak some home to help clean my bike chain with. Any chance you were in the Corps and stationed at Camp Lejuene? There's a huge issue with contaminated water and SD is listed as one of the specific diseases caused by the bad water. BTW, my dad was, but I never lived there. Hang in there and don't hesitate to ask me any questions Tully
  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 son. Now I'm the designated putter in a scramble, haven't been on my bike in years (Most Moms tend to think this is a good thing) and now I have to sneak up on a 13 year old young man. Losing the ability to get out there and work or participate does hit hard but I'd rather here taking my daily meds than the alternative. As far as not telling your family, all I can say is it will not take long for them to figure out something is wrong. So you probably should think about how/when to tell them. I went to all of the appointments alone, when I got my diagnosis, the doctor told me he never wanted to see me again unless I had someone with me taking notes and/or answering the questions I forgot to ask or was too stunned to. I posted a thread on my history a few days ago "....diagnosed Sept 29, 2008" Take a few and read it and the comments. This forum accepted me with open arms immediately. Hang in there and if you have any questions, please ask. Tully
  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 procedure they can do to relieve the contractures in my hands? It would be so nice to open my fingers a little more
  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 seen on here. Until stumbling upon this forum, I have only met one person with scleroderma. I was going through my harvest process and it was her last day there. So now, 5 years after my bone marrow transplant I'm dealing with the nightmares again and hearing my Dad say, "Careful son, there's always people that have it worse than you." Yes, I miss my Ducati, the golf course and tossing the (American) football with my son, but at the end of the day, I'm able to live independently and still take care of my son. Working on the CJ, refurbishing furniture and chores around the house are a lot harder but I have managed. If I can't do something, I just ask a friend or just call someone and pay them to do it. I'm lucky that I had a really good job with decent benefits. So, reading what you guys are going through is very humbling and I'm honored to be so willingly and warmly welcomed to the group. Okay, allergies are kicking in, 'Nite all
  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, connective tissue hardening on me, the only skin issues I have had were a few ulcers on my finger tips. My hat is off to you and the others that have it allot worse than I do. Lastly, your husband sounds like a very stand up guy. I wish I could give him a knuckle bump. My hands don't allow me to shake hands anymore. And your writing is very good, thanks for taking the time to post up your story Tully
  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 to 100%. So now I have a new 100% and if/when the next shoe falls, I'll just have to adjust to a new 100% Good Luck and enjoy the holidays Tully
  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. Not being able to rub your own feet at the end of the day can be a little frustrating. I do realize that I should share my "success" with others fighting this disease and other auto immune diseases, so if anyone has any questions please fire away. Over the years, I gotten used to all the questions and if I can help anyone, cool. If anyone wishes to contact me privately, let me know and we'll figure a way to communicate privately. And I will try to write my posts in a manner that require less editing.
  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 caused a lot of pain in my hands, I could barely ride my bike 30 minutes before it became too uncomfortable to ride and the tips of my fingers were starting to curl. The doctor and I were talking about going to a RA center for some fresh eyes. He said something about joint/bone pain and I said, "No, more of a muscle skin pain." I've broken a few bones and there's a definite difference. I saw the light bulb explode. He said scleroderma, and I said what? I got an appointment at the Medical University of South Carolina in Charleston on September 29, 2008. After an hour of paperwork and an interview with the Resident, the doctor came in, asked a few more questions, and did the pinch test, I scored a 24. He said yep you have Diffuse Scleroderma. Prior to the appointment, I had Googled scleroderma and knew I did not want it to be that. Sitting there on the table, 3rd year student, intern, resident and the doctor said "Okay, here's the deal, anything over 17 is diffuse, there is no cure, treatment is terrible, your quality of life is fixing to fall off a cliff, I'm estimating you have 2-3 years." He said my only hope was the SCOT Trial but don't expect a lot. I said sign me up. The rest of the day was full of a ton of tests. I live in Georgia, 5 hours from Charleston, but I don't remember the drive home. It took about 3 more trips to MUSC and then the Duke Hospital for a solid 3 days of test before getting accepted into the SCOT trial. The trial is/was a year of cyclophosphamide or a Stem Cell transplant. From my research, I wanted the transplant and of course the computer put me in the year's worth of chemo. My last ride was February 2009 and by May, I could not get in my CJ. I started chemo in July, and by the holidays I was in a wheelchair. My last chemo was June 2010 and I could barely walk 20 feet. I knew the end was near. In July I had a conf call with MUSC, Duke, and my insurance company, and it was decided I would go through the transplant. They gave me until September to get over the chemo, then another week at Duke for back to back, 5 days of test and exams. I was given the green light to have the transplant. November they did the harvest, December 2 I checked into Duke for the transplant. December 23rd, I went to a apartment close by because I had to come to the clinic every day. Came home on February 1. By Memorial weekend I could live alone. In July I drove into town to have lunch with the work gang. Over the holidays in 2011, I threw my wheelchair in the basement. I still can't ride my Duc but I can get in my CJ. I'm 53 now. Take that scleroderma! So everyone, keep up with the good fight. If anyone has any specific questions about anything, just post them and I'll answer them when I can. I'm medically retired on disability. I don't like it at times but there are times it is nice not having to work. It's Friday, so that means lunch with the old gang. I'll be back later Tully
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