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Bobby Dazzler

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About Bobby Dazzler

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    Bronze Member

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  • Location
    Livingston Scotland
  1. Hi Jo, Yes it's been too long without keeping in touch and this time I will not become a stranger. Goodness, it seems such a long time ago that I was a "Newbie" and so many things have happened.( that's for another post as it will be like a 5000 word essay ?? I think I now have a consultant for every part of my body ? I haven't looked at previous posts to get a catch up, but hopefully you are keeping well and I wish Amanda was not having such a rough time. As always if I can pass on any advice due to my own experiences with scleroderma then I will be delighted to do so Take care and I
  2. Hi Amanda, It's the stranger from Scotland! It's great to see that the site is going strong and it's great to see some of the familiar names and Hello to anyone else who is new to me. In response to your question, yes I have unbearable heartburn and it seems worse since I started the hydroxychloroquine (plaquenil) I am also on 2g Mycophenolate Mofetil daily plus numerous other meds. I currently take 60mg and Ranitidine for the heartburn but it is still bad. They now want me to stop the Ranitidine because I have a lump on the left hand side of my breast and although not that common in males
  3. Chris, Like me I know you would rather not have the illness that forces early retirement but I am delighted you got there in the end. I know how you feel it is a great relief when its out of the way and you feel that people do believe you. Its the next chapter of your life so good luck for the future and dont be a stranger All the best Bobby
  4. Hi Everyone, I suppose in one sense like us all I am unlucky to have this illness, but in another sense lucky that my employer was very supportive and worked with me not against me throughout my illness since it was diagnosed in February 2009 (if they had only supported me for the previous 18 years !! now thats another story!!) I have to admit my managers, Human Resources and the occupational health doctor played it by the book so it did not cause me any further stress,they had not previously heard of Scleroderma so they had to research the requirements and law from an employers positi
  5. Hi Ann, I also had same problem,I tried various options but recently invested in an portable media player (wireless gizmo, very trendy) and now I can just listen to the books and have the pick from thousand of titles. at first it was strange lying back with headphones on and totally hands-free and listening to the book being read out, but now I am used to it I love it as I feel its "me time" and totally relaxing. I know it can never replace actually reading a book and not for everyone but its just another option. Take care Bobby
  6. Hi Everyone, as it says in title I travelled all the way to London from Scotland for my first appointment at the Royal Free Hospital on Thursday and although very tiring what a beneficial journey it was. First of all can I put anyones mind at ease travelling from Scotland, I travelled by train to kings cross then got the bus (number 46) right outside of station that then stopped at the Royal Free (perfect !!). I First saw Mrs rheumatologist who took all my details and gave me an examination and gave me assurance that although I have my condition that I am not alone and that they were n
  7. Hi Alex, I am glad you had a good break.I have just noticed in the last week that I am covered in little brown spots all over my body and a few on my face,they look like freckles and some are bigger than others. I tried to open your picture but got same message that I did not have permission Have A good day and Take care Bobby x
  8. Hi Amanda,Susie and jensue, Has The iloprost worked for me? Honestly I havent got a clue the only thing I noticed was the swelling in my hands went down a bit and of course this pain behind my knee.I went to the general practitioner yesterday and she put the pain medication up from 20mg to 30mg daily plus I was given liquid pain medication that I have to take if the pain is unbearable, It is painfull 24/7 so your guess is as good as mine when to take it without overdosing. My general practitioner is referring me for an ultrasound so hopefully I will get an appt soon as the pain medication
  9. Hi everyone, I had my first appointment with the physio today since I got out of Hospital 6 weeks ago. I explained to her that my mobility is very poor at the moment and that I cannot stand the pain at the back of my knees, on a level of 1 to 10 my pain is a 10 plus. The Physio informed me that the pain is in the hamstring area and appears to be a vascular problem not a physio related symptom and suggested that I go to my general practitioner. I explained to the Physio that the pain at the back of my knee started during the 3rd (6 hour) session of iloprost infusion whilst I was in hospita
  10. Hi Monica, I also have all the classic symptoms of Sjogren's with dry eyes and mouth. The eye specialist is reviewing me every six weeks and I have had to get new glasses twice in the last six months due to a significant change in the lack of vision in my left eye. I had never worn glasses previous to diagnosis six months ago. As my specialist does not have a lot of knowledge about scleroderma combined with Sjogren's she is going to seek advice and see me in 3 weeks with a suggestion for meds. I cannot say that I have a problem with sunlight all of the time only occasionaly do I have
  11. Hi Everyone, Thank you all for the advice and support given to me. I am glad I plucked up the courage to start posting on the forum and will continue to do so. Hi tricia thank you for info, I am going to Hampden Park in Glasgow next Saturday to watch Scotland playing football in a world cup qualifier,so I am sure I will get a lorra lorra laughs there :rolleyes: then come home in tears :angry: Have a great day.
  12. Morning all, its a sunny day here in Bonnie Scotland now take note of this date as it doesn't happen very often this year. I would just like to say thank you to all of you for getting back to me and for the advice that you have given it means a lot to me and My Wife as we realise that we are not alone in this world coping with the Illness on our own ( sorry girls yes I do have a wife I had to be upfront in case you were all booking flights to come to scotland to see me I think if you saw me you would have stayed at home anyway ;) On the subject of my wife She has been fan
  13. Hi Jefa, Thank you for that. I think I must be having a major senile moment. I saw the post Royal Free Hospital started by Bobby Dazzler and thought someone has pinched my topic :angry: then I remembered that was me I think I should go and take my medication and have an early night ;) Lots of Hugs
  14. Hi Amanda, I think I am having one of those senile moments ( please dont tell me thats also linked with Sclero !! only joking ) I have went into the my controls section, edit profile then got page that shows aol identity,yahoo identity etc. and dont know what to do next. Hi Joelf, sorry I didn't say hi in previous post but your post was not there when I submitted mine, thank you for advice and if you have appt at the Royal Free in September who knows we might meet up. I was thinking of flying down to London but although the train will take longer it would be better for me to leave an
  15. Hi Janey, Amanda and Peggy, Thank you for replying to my post and for the encouragement and help that you have given me I think one of the hardest parts of this illness is that I spend all my time explaining and educating others about Scleroderma so it is great to communicate on this site and be able to relate with others and not to have to explain. At a recent hospital appointment a nurse was writing down my details and asked me where I had been on holiday ( I also have hyper pigmentation all over my body and I look very tanned and dark skinned ) she also commented on how smooth a
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