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HERBIE

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  1. Dear all First of all a huge thanks to your really helpful and supportive replies - your kindness made me cry, Iwas feeling really low (beginning to doubt myself and feeling totally isolated), and your support was really lovely. To update: after your replies I decided I would appeal the DLA decision, and as part of that, I requested a copy of the report from the ATOS doctor who came to do the medical. I was gobsmacked when I got his report - there is a whole page which goes through daily activities (from dressing, to bathing, preparing food, using stairs etc) and he has put that I can do ALL of these with no help (despite when I completed my renewal form saying I can't do any of these without help). Then in several other boxes he has put the following comments 'normal pace/gait/balance' - I didn't even stand up when he came round! He certainly didn't ask me to walk either. 'Significant disability is not likely' (regarding my feet - which have deformed claw toes and excessive swelling), and despite the fact I had recent bruises on both forearms from recent falls ''unlikley to have any risk of future falls' ending up with ''severe restriction in walking ability is unlikely'. After being speechless for some time (doesn't happen often with me, lol), my first thought was that the form I filled in was clearly completely ignored (where I point out I have to have help with dressing, bathing, am in constant pain with my feet, knees and hands (so much so that my general practitioner prescribes me methotrexate, hydroxychloroquine, and pain medication). Secondly it made me really angry, as I felt as if my own experience of this rotten illness is completely disregarded by the decision makers, and one visit from a doctor with no experience or specialism in rheumatology (let alone sclero) over rides what I say. It really does make you feel demoralised. So I decided I would appeal, and collected together a range of documents - one of them being my recent podiartrist's report - which clearly states that the autoimmune disease has damaged my tendons, synovial fluid, I bursitis, tendonitis, claw toes, cannot walk properly (in a lot more medical terminology about toes, bones etc), and suffer acute pain (bear in mind this report was also send to the DLA with my application - so it's not new to them). I have produced a very long and detailed document as part of the appeal, going back through all the criteria headings in the DLA application form, and giving concrete examples of why/how I can't do things, and including things like I have Sjogren's syndrome, ulcers on my lower legs etc. I have added the podiatry report, plus a letter from my rheumatologist stating that as my symptoms are significantly worsening (ironic then that I got DLA last year with no questions!) since October last year that I have been put on methotrexate, and have to see him every 4 weeks (at one stage it was every 6 months, then every 3 months and so on, as the pain in my feet became harder to deal with). I did show all of this to the doctor who did the examination, but clearly this had no impact on him at all. I have booked a double appointment with my general practitioner this week, where I hope to get them to write a report or letter to go through how the disease has impacted on my life and increased need for help and support. In addition, I printed off the brochures on this site, and other scleroderma ones, and put the websites for several support groups and information sites, and included all this in the letter too. This has all gone to the appeal section of the DLA, recorded delivery. When I hear back, I will update you on the process. I am lucky that I am a confident person, good with computers and used to form filling, and standing up for myself - but even so this process has been so far, really horrible, and distressing. I am determined to follow this through, and keep fighting - especially frustrating with a disease that no one has heard of, and has so many different symptoms. Thanks again for your kind replies - much appreciated. Lois x
  2. Hi all I have been diagnosed with limited scleroderma for about 3 years now - and the worst problem I have is excruciatingly painful feet. It was because I had such difficulty walking (and swollen, shiny feet!) that I kept going to see my general practitioner, and the result of a blood test showed it was limited Scleroderma. I have all kinds of treatments to help with hypertension, double base moisturiser, etc, but no one can seem to help me with my feet. It's meant that my life has been considerably altered in the past few years (I am 48 now), and where I used to be active and sporty, I can hardly get round a supermarket now. I have to use a walking stick, and have a range of painkillers and pain medication, but although they may dull the pain if I am resting with my feet up, they do nothing at all to help with pain in walking or standing. I work fulltime as a department head at a University, but they have been very supportive, and have got me things such as hands-free computer training, special chair etc. Last year I received DLA (disability living allowance) with the high mobility needs component - it was fantastic, as I could get a motability car, and the money enabled me to get taxis if needed, and specialist shoes. However, when it came for time to renew my DLA application in December, I was turned down from any kind of award (they came and took the car away in January). I am now about to appeal, and wondered if any of you had any advice I could use? Both my general practitioner and my Rheumatologist haven't treated anyone with scleroderma in their practices (not very reassuring) and it's got to the stage where I feel I know a lot more about it than they do. The rhuematologist had to complete his part of the DLA application form, and the benefits people said it wasn't enough information. They sent an independent Doctor to give me a medical at home, and it was really hard going. He had no experience or knowledge about the condition, and seemed to think that if I could work full time, I must be OK. I feel I have to battle all the time to get people to understand the illness. The problems with mobility affect all areas of my life, from doing up my own buttons, to not being able to hang out washing any more. My husband is brilliant, but it has really changed our lives, and dealing with fatigue and constant aches and pain can get so debilitating. Anyway, if anyone does have any experience with appealing DLA with scleroderma, and any suggestions of how I can improve my chances in appeal, I would be so grateful if you could let me know. Thanks Lois
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