Well I saw the rheumatologist and paid .....read on

Hi all, well I did see the rheumatologist Dec and he ran some tests. OK confirmed the RA, OA and osteoporosis and fibro then announced I was a mess. Oh yes included the various arthritis in the spine and the kyphosis and so on. But of course no treatment as I can't have anything. Did suggest knee braces. Want ankles as well but then I could not walk at all. Boots Ok to hold the feet as they go over so much the muscles and tendons are in a state and tight and painful. I have to hold my foot on the far edge by the big toe to get the knee in line on the right side with the hip. So no real progress.

Any ideas on whom I should see next?

Not sure I am even taking in Vit D as I cannot tolerate any fat or very little. Spine is quite painful on the lumbar part and the neck as well. [crumbling started - as seen on x-ray]. No help for that either. Said it was difficult to sleep cos of neck pains and added knee and muscles.....did not comment. Paid out £150 today. £180 last time but at least he confirmed what I was told in 1994. It is now on my records.

[for those who do not know me I am qualified in medicine and have an ND and PhD for Immunology. NOT a GP type medicine though.]

6 Replies

  • Sorry Skeggy - my only thoughts are about alternative practitioners who may be able to treat you by working out vitamin and mineral imbalances. Would you be able to tolerate supplements at all? If not is this because you have Ceoliacs? Does it help you to be able to call a disease a disease you are the one who studied immunology so I'm sure you are best placed to answer your own questions? The only think I do which seems to help me is gentle yoga and other muscle exercises on my Wii fit. I built up very slowly though and haven't got your long term untreated RA as a starting point. I know you do tai chi. Lots of sympathy anyhow.? Tx

  • What about seeing an orthopaedic surgeon? Maybe they could help somewhat with the tendons and ligaments in your ankles. I really feel for you because I was told when in my 20's that I had the spine of an 80 year old. Well, I wish I could have seen that 80 year old who had my spine! And that was 20 + years before I got my diagnosis of PsA so I too have had no treatment for my various back and joint problems other than a spinal decompression 16 years ago. Wish I had a magic wand for you to take the pain away, I really do. Clemmie

  • Not sure what to recommend but gosh I do so feel for you. Good luck x

  • Thank you for your support it is worth millions to me. love to you all

  • It must be so frustrating to work in a medical capacity and yet, being unable to help oneself. I am really sorry. Was the rheumatologist not able to forward to an orthopaedic regarding your knees and ankle? I am surprised at that. I am really sorry for you.

    You take care and sorry for not having any suggestions for you.

  • Thank you. It is the muscles and joints twisting and causing the muscles and tendons to change and thus rebel and hurt. The hospital can't make me any more shoes as the feet have twisted so much. If I get my knee in line with the hip it means walking on my big toe. I have no clue on what to do. Am 71 and it will it will get worse. So making the home as secure for me as possible. Now thinking of a stair lift. But who? So many firms and so many prices????? I am coeliac and also on a low fat diet and have a massive malabsorption problem. Wish I could eat a large cream cake or something naughty.

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