My appointment Monday

Well it has been around 31 years since I last saw a rheumatologist. He was horrified I was not being looked after even if I can't take medication. After all something might be made that can help and also operations etc might be suggested sometime...will decide on that. He took x-rays and blood tests and I see him again in Feb.

Also baffled as to why no one was caring for me re coeliac etc and left quite alone. He thinks my GP might be annoyed I got an ND etc and also that I had to go to the Czech Republic to find out what was wrong with me when they found the coeliac etc. He did at least look at the joints etc though no knowledge of why my body is twisting yet, neck, spine, fingers and wrists, hips, knees, ankles and toes so far.

4 Replies

  • what's a ND?

  • That was going to be my question too. I do think it's shocking that no one has been prepared to monitor your disease activity over this long period of time, whether or not there are drugs you can take. It seems to me to be the ultimate failing of doctors if they can only rely on drug therapies in order to make any progress in combating the disease - they should feel shame about this as there are many other types of intervention, from surgery to splinting and physiotherapy and checking your mineral and vitamin levels were right as well new medications that are coming on the market all the time. I am also startled that they didn't want to research why you couldn't tolerate drugs more thoroughly? So glad you seem to have found a new and much better rheumatologist at last.

  • I was diagnosed when I was 2 years old and under the care of Paediatrics till I was 18 when they discharged me - and I never saw a rheumatologist until after I had both hips replaced when I was 35. By then there wasn't anything he could do - the disease had wreaked havoc on every joint. He only sees me once a year - and then refers me to surgeons, for MRI's etc when he feels the need. Although the disease had also taken its toll by the age of 5 I do wonder if things might be different for me now (I'm now 57) if I'd beein seeing a rheumatologist from the age of 18.

  • When the GP said no one could help me cos I could not take any drugs I went to complementary medicine. My Gp said "I was too allergic for the NHS and to go to Complementary medicine - back in 1996". He also said 'to give him three weeks notice of wanting to be ill'. I was "so allergic to everything" my IgE the allergy one [simply put] was uncountable and should be ,05. Now once I had got the info my therapist said one day "you could learn this". She expected me to do an ITEC roughly like an A level. Anyway being academic went for a BSc in Medical Studies, then MSc in Naturopathic Medicine and Natural medicine [2 degrees] and then ND Naturopathic Medicine, HD Natural health Sciences and then the PhD Immunology "How Allergies and Intolerances become Auto Immune Diseases".

    I did go to friends in 1994 in the Czech Republic who proved the coeliac disease and dairy foods. The reasons I could not walk for 14 years 1980 to 1994 was cows milk. They believe the rheumatic fever added to the allergies caused by peanut butter both in 1944 caused the body to go wrong.

    I did most of my qualifications in medicine in the States. To finish thus lot I used to be a lawyer, accountant and eventually teacher of them in London Secondary School.

    I am not in the least bit practical. Now you know why I feel like answering Some medical questions.

    Wasn't going to say as I am not a big head. But had to answer the questions

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