Jump to content
Sclero Forums


  • Content count

  • Joined

  • Last visited

Everything posted by Sticky

  1. Diagnosis of Systemic Scleroderma

    I would find a social worker in your area to help navigate the many challenges you are facing. It can be overwhelming, confusing and hard to focus on your health. I would also apply for Social Security Disability and Medicare and/or Medicaid. All of this a social worker can assist you with, along with any other assistance in your area that is available. Inform your doctor that you will be applying for those. I am rarely here, but reach out to others in regards to Sclero; they can give you a boost when you're scared. We all are at one point in time.
  2. Coping with disability

    Well, I've been down for a year and a half now. Its a hard thing to do learning to slow down. I fought it like a wild dog on a chain but got better as time passed. Finally I just learned to let go of what once was. I try to not do too much of one thing at home, read a little, watch tv a little. I keep a three plants that does not require much work to water but just enough to check on them. I also just returned to an old hobby I had as a teen, aquariums :D I had done all the design and had a friend help with setting it up. I use a siphon hose for water changes so no heavy lifting :) The aquarium works in two ways. When I'm down and in pain I just watch it for hours. When I'm feeling good I can tinker with it. Plus feeding my fishies each day gives me sump'n to do and not hard either. I have four Florida Flag fish and two Blue Spotted sun fish and a electric blue crayfish! Its really is a stress reliever and a place to get my mind off of things. I designed it where it literally looks "alive" with a river current that gently moves the plants and gives the lighting a vivid effect. Try to find things that work for you. Ask your self what will relax you and provide a way to pass time yet not be demanding.
  3. Raynaud's questions, new to site

    What she said! A doctor who specializes in sclero is the ticket! I found that out the hard way after 3 regular rheumatologist's! One being a very good one at a prestigious clinic had somewhat of a clue but still dropped the ball.
  4. Vitamin D

    Ok folks, My new doctor found I had very low Vit D. As opposed to the last three rheumatologist's whom, imo should have already looked but that's the luck of the draw. I mean I never knew about it until she asked if I was ever checked! Anyways, I understand its relative roll in all this sclero and etc. I just started 50,000 IU's twice weekly for 8 weeks and we will see where I'm at. My questions to all ye here in sclero land is; How long did it take to feel/see improvements and what were they? Did it help with fatigue and malaise? Did it help with pain? For example I have it bad in my feet and legs as in "bad to the bone" ya know like; George Thorogood I also have psoriasis and maybe a few here have it as well and maybe it will help that too. Soes, anyone have any experiences they would care to share?
  5. Vitamin D

    Hi Lisa! Ya you Englander's are about to get a NFL team, huge Saints fan here and on a Saints site I made a post about what the mascott would be and someone posted "the fog" too cute!
  6. Vitamin D

    @inkedup Do I ever understand about hard it is to tell whats causing what! I have been through all the GERD stuff and nothing remarkable, although I did have a colonoscopy few years ago. I had 3 pre-cancer polyps. We will do a coeliac panel next visit, but I did try gluten free diet on my own. No positive results but there's that "hard to tell" thing again and is why I still wanted it done. From what I can tell looking back, I have had it a long long time and am hopeful it will help. I live in the "sunshine state" of Florida and do get sun but with my COPD its brutal out in the humidity so no long periods, plus a lot of the meds prevent exposure to the sun. So I have to be careful in these here parts. I had so much going on, sinus surgery etc. etc. etc. as well, three within a year! Calcium cysts no less. @Joelf Yes, I thought about the steroids and was on them, had to drop 5mg a day and when I went to Remicade it was just too much kidney wise so I asked to get off of them. Felt like a mule kicked me Remicade has been effective in bringing my Sed. rate and CRP down while other biologic's failed and it has worked wonders on my spine. I'm on my 4th month on Remicade but my new doctor wants to add chemo. However, with Lupus that may signal an end to Remicade and will have to watch that as it goes. Tried MTX before but caused TIA's and my new doctor was the only who could explain why that occurred! Will use a less toxic one she said. @Amanda, Well I hope it helps, I'm placing a lot of faith on it probably too much but hey gotta keep the faith :rolleyes:
  7. Hi folks! Been a while since I posted and busy with it all, changing doctors etc. It was back and forth and yada yada yada but I'll pop in more often now. Now gets this, as the title says, I have Sine Scleroderma, PsA and Lupus! My, aren't I special? -_- As my sclero specialist opened "you are a very interesting individual." I mean all three? Gonna get fun now! :emoticon-dont-know:
  8. Hiya Amanda Glad to bring a smile your way :) Hey hey I had to ask and I rightly don't know if there are any good ones! :rolleyes: And I may just have 3 for now, but I'm not done yet and this new doctor does not mess around, she is super super awesome! :P Reminds me Ima make post asking about Vit D
  9. @Joelf Thanks for the links! Polyautoimmunity sounds kinky :emoticons-line-dance:
  10. Wait! do I get to choose which parts of each one! Sorta like a custom job! :emoticons-clap: 10! wowzers thats way too many! Ya jackpot thats what I hit all right :/
  11. Another dilation and more GI fun

    In many plans, doctors make their bonus money by reducing costly procedures for the insurance companies and that is why there are many like that out there. But Amanda is right about asking him about it and if it were me I would find another doctor flat out.
  12. SCL-70 and Sine

    Greetings, I am new here and have been on a six year journey that thus far indicates Sine Scleroderma. However according to my rheumatologist I do not have scleroderma because I have no hard skin and he tossed out the test results. He may have a valid reason for saying that or maybe not so valid, but I'm sure those here would agree that the subset Sine would apply here. Now I have had a comprehensive immune test done at a major medical centre on Nov. 8th and am set to see one of their doctors next month. However I am trying to get a second opinon before going there (long story) Here are some hightlights of that test with my results in the first column with normal ranges to the right. Thoughts any one? ANA 10.1 units (0.0-1.0) SCL-70 3.7 units (0.0-0.9) positive Sed rate 50.0 mm/hr (0-22) CRP Quant 46.8 mg/l (0.0-8.0)
  13. SCL-70 and Sine

    That it is! They took two samples during the scope so must have found something. GI tomorrow then I'm heading home. We felt the psoriatic arthritis (PsA) was for sure, my local doctor was stopped on that though, but I stuck to my guns and good thing I did. . Just too much going on that psoriatic arthritis could not cover.
  14. SCL-70 and Sine

    Thanks Joelf True enough and already changing course for PsA and rather than trying old school DMARDs it's back to biologics. Got to get the inflammation back to earth, the predisone put a dent in it but it's still in the stratosphere. As for sclero we shall see. Going down an unmentionable path that worked well for me for 3 years Of course sclero was not in the picture not even remotely thought of. I am interested to see how that plays out, good or bad its worth a shot given the success I had back then. If not then will see what's the next step.
  15. SCL-70 and Sine

    *chuckles* Yes, two for the price of one! Thank you Amanda and yes it feels like 200 pounds -- er, kilos that is in your neck of the woods -- has been lifted off my shoulders! No more fretting about what and hopefully finding some balance and with these two its up on a tight rope. :D Cheers!
  16. SCL-70 and Sine

    All righty then sports fans! :) Sine Scleroderma and Psoriatic Arthritis is the official word. Not that its great news but it sure means a lot that the guess work is over. Having some endoscopy done on Monday and GI on Tuesday. Blood tests were funky at first glance but most likely due to current meds which has just changed. I'm going to let the doctor sort that one out . :P Different type of biological and no more DMARDs for now, thank goodness, due to TIA's. Peace. Out.
  17. SCL-70 and Sine

    All true Shelley, but they are going to have to explain ANA 10x higher than normal along with very high inflammation. Keep in mind I was on Humira and MTX at the time ;) For me it's not about what it is, only that it is. Folks don't want to believe something is wrong when you're very sick all the time. They believe it's all in your mind. The past six years was spent knowing something was wrong, very wrong. For example, when I had a torn ACL and meniscus I was sent to PT with out so much of an X-ray. Could not hardly walk and trying to do ridiculous very painful exercises. Ultimately having an MRI was when the problem was found.
  18. SCL-70 and Sine

    Hi miocean, :) Thanks for your support and words of advice. I am struggling with the steroids. I'm at .5mg per day I just could not handle 20mg. :( The weight in a way does not bother me, but I was chastised by a lung doctor who is world renown and really put a dent on my esteem. At the time scleroderma was not in the picture so I am the better man for it. :) Two more weeks for my consultation! And will see what's cooking with that SCL-70 test! I also have an amazing find for not only me but my family as well! Low and behold I just found my great-great grandmother on the Choctaw of Oklahoma rolls! The recent brush with scleroderma put me to thinking and is why I researched my geneology. The Choctaw of Oklahoma are 20 times more likely to develop scleroderma! I solved a 156 year old family mystery and helped my diagnosis in one shot! :D
  19. SCL-70 and Sine

    Thanks Joelf and Hi! To post my whole story would be book length but they prescribed prednisone along with antibiotic and that has been every 6 months for the last six years. At the time it was due to lung issues (ex-smoker). However during my first visit at the Mayo they removed the COPD label. Surprised at that after three lung doctors went with that for so long. Anyways my point is, I can relate with the weight gain, each time it was five pounds gained. Doing the math I can show where that attributed to my current weight. On a side note, I find cutting carbohydrates to a bare minimum and no sugars really helped me. I've been on a diet since mid Sept and lost 25 pounds so far! Six years ago my weight was 200, mid this year I was 277, and now its at 250 after starting a diet! But will see what happens now. :angry: No bread, rice, pasta, nothing white! I have meat and eggs mostly, and pork rinds for snacks. Yes, I know all the fat issues but hey one thing at a time!
  20. SCL-70 and Sine

    Thanks all! And glad to be here :) One of the things that has me concerned, and I'm just going by tid bits, is that its crucial that a systemic scleroderma patient not be given predisone (read that here). My doctor prescribed 20mg predisone per day with a 4 month supply. When told I could not have it (scleroderma) because there was no skin involvement which I knew, there are cases where there is not (talk about having my poker face on). Really piqued my curiosity. At first I felt it was just a 21 pac but when picked up my prescription I was like "huh" sheesh enough to supply a pro football team. Now I can see the inflammation angle and shutting down the immune system, but man oh man just don't know. I'm still calling for a local second opinion and mid next month is not that far out for the major medical center. I did get some steroid rage and really done a number on my legs and feet, I was up to 4AM each night so I weaned it down to .5mg and may stop all together until this gets sorted out. Hope I'm not coming off as a whiner, it's just I have no one else to talk with about it.
  21. SCL-70 and Sine

    Thanks for the advice. I visit a major medical center next month and still trying to see another doctor. Its hard as I live in the state of Florida and this time of year, any and all is booked solid till season is over. What I do is call each day for a cancellation. That's how I went from February 1st to next month for my appointment. ;)
  22. SCL-70 and Sine

    Thanks Judy and here are my symptoms I do have serious esophageal issues, very inflamed but not yet informed of actual motlility, however I'm still wondering about my current doctor. I also had 3 pre-cancer poylps removed a year ago, colonosocopy. I did pass a barium scan but was told I had acid reflux regardless due to my weight (250#) at 5'10" I also have sleep apnea. At first it was thought I had Psoritic Arithritus, at onset I was hit in lower and upper back, severe neck pain, sausage digits (sometimes puffy now), feet and calves stiff and extremely painful when walking at work. My feet would make popping noises like silly putty after a shift at work. Very painful to the point of not able to walk. Hands, fingers stiff but joints feel okay. This was a year ago but I have had problems for the past six years. I have morning stiffness; its two hours before I can move around. Once I get going I have to be very careful to not over do anything else or I'm stiff all over that night and cannot move. I also cannot sit for very long without becoming stiff. Basically, if I watch TV I need to move about during a commercial. I cannot stand longer than 20 minutes or my feet feel like its 12 hours of standing. There are some vascular issues, legs mostly. I have flare ups in my elbows, nasty ones from any over activity. Fatigue and malaise. Chronic sinusitis. I was on methotrexate (MTX) which cleared the psoriasis but led to transient ischemic attacks after 24 hrs of taking it. I also tried Humira which helped a little. NSAIDS were not effective so all have been stopped. I have a recurring infection, why or what we do not know at this time, but suspect its from my esophagus issues. About every six months the last six years, but now every 3 months the last year. The SCL-70 range for their lab is 0.0 to 0.9 normal, 1.0 to 2.9 weakly positive, 3.0 to 5.9 positive and 6.0 and above strongly positive for Scleroderma. Mine is 3.7 My ANA is considered extremely high as are the last two tests for inflammation. As for any skin issues you spoke of, none that I can tell.