Jump to content
Sclero Forums


  • Content Count

  • Joined

  • Last visited

About Steve

  • Rank
    Senior Bronze Member

Profile Information

  • Location
  1. Well done Barbs! Sounds like you nailed it. I'm afraid I got dragged away from the car radio (the only place I could pick up the station) before you came on, so I missed it. Hope you are well.
  2. Hi Barbs. Well done for agreeing to be a spokesperson on the radio. We all have great faith in you and know you'll represent all us with this condition brilliantly.
  3. Hi Sam. The only positive I can see is 'No news is good news!' But it is unprofessional of him. I, too had a long wait, almost six months, but I got it in the end. So good luck,
  4. Hi Sakar. My name is Steve, and I have Diffuse Scleroderma. I'm also one of the moderators on this site. There are a few men who regularly post messages on the message board, but you are correct, there are far more women with this disease than men. I don't know the reason why, but I'm sure people will chip in with their ideas on this one. Thank you for posting
  5. Hi Helen. Sorry I'm a little late in welcoming you to our group. You mentioned stress as a possible trigger for a flare-up. I definitely found the more stressed about something I was, the worst it made my symptoms feel. for instance, I'd get a bit stressed at work, also I'd stress about going to work, but since retiring early, I seem to be at a manageable level with this disease (Diffuse SD). So I would recommend learning techniques to help you relax, to help with fighting this.
  6. Hi Sam. I wish you very good luck with your disability hearing. If anybody deserves it, you do. Maybe then you could think of retiring, because I know how difficult it has been for you to continue working. I'll be thinking of you.
  7. Hi Phaedre, and welcome to our community. So sorry you are in a flare right now. Hopefully somebody can put you in touch with the doctor you're seeking. Thanks for posting your first message, so good luck with your search.
  8. Hi Laura. You must be very frustrated not to have a positive diagnosis yet. Don't worry about offending anyone here about wanting a diagnosis. we all know how we feel, but it is actually comforting to know that there is a name for what we are going through, and it isn't just 'in our heads'. Try to be patient though, because stress can trigger your symptoms into flare sometimes. Tell your next specialist how you feel, and maybe he could reassure you that you do have something real going on, but haven't had the one test that may pinpoint it yet. Good luck, and please keep us posted.
  9. Hi Lisa. well good news about the PFT results at least! The chemo is probably helping to keep that in check, as you say. It did for me. Also, have you noticed a softening of the skin with it? It was something else on the plus side for me. I don't like the sound of your liver results, they are strange, aren't they? Your doctor does sound like he is on the ball though, so I'm sure you can take a little bit of comfort in that. I hope he can reassure you on Wednesday when he goes over the results with you. Thanks for keeping us posted, and I look forward to more good news from you. Steve.
  10. Hi Jefa. I see you're a fellow brit! I'm sorry you are in this limbo nightmare, although having read your symptoms, you do seem to have a lot of the Scleoderma signs. Hopefully your new specialist will come through for you. Has he conducted a skin biopsy? This can prove very useful in a diagnosis of SD. Skin Biopsy Good luck, and thanks for your post. Steve.
  11. Hi memeto2. I'm sorry to hear about the position you are in. I think the first thing for you to do is address the pain issue, because if that was sorted out you could perhaps carry on working, up to getting disability. This doctor of yours sounds like a lemon! Therefore, I would look up other local doctors (even not-so local) who either specialise in Rheumatology, or at least have a better understanding of it than the one you're with at present. Perhaps if you did a search on the internet for one. In my case, my Rheumatologist told me that he had done as much as he could for me, and that mayb
  12. Hi Dave. You are lucky to be able to live in a warm climate aren't you? Up until a few years ago, when a patient saw a doctor about Raynaud's, they'd often get told that the best prescription is to emigrate somewhere warmer! Anyway, I am thinking of spending a vacation in Florida shortly, so I hope the warm weather continues! I know that I won't be wanting to return home to chilly England too quickly though! Thanks for posting your 'sympathies' :rolleyes:
  13. Hi Sweet. I am from the UK as you know, but when I was seeing my own rheumatologist, he said to me after about 6 months that he had gone as far as he could with the knowledge of SD that he had. So he suggested I saw my doctor to be referred to a specialist in SD, which I did. Since then I feel that I have had the best care that is possible as far as treatment and monitoring is concerned. Even though I have a 150 mile round trip, it is definitely worth it for my own peace of mind. I hope this helps you decide which way to go.
  14. Well done Lisa ;) your work around the site is invaluable. Glad you are part of our team, and good luck in your new role.
  15. Hello Irene, Steve here (moderator). I just read your post about the new anti-inflammatory that you have been prescribed. Don't worry about mentioning the name of it, so long as your doctor has allowed you to take it, it is okay to post the name. You will then get some feedback from other members who have taken it. Thanks for posting, and I look forward to your next message.
  • Create New...