4 days til next rheumatology appointment

4 days to go and I’m getting a bit nervous about Monday’s appointment with the rheumatologist. I had hoped to see this particular consultant at my appointment three weeks ago, but for some reasons, the powers that be had allocated me an appointment with a consultant who had never seen me before. Without going into too much detail, the appointment left me extremely distressed, as well as leaving me exactly where I was before in terms of treatment. I had wanted to discuss changing to a different regime of “disease-modifying” drugs as I had felt that the ones I’m on weren’t substantially reducing my flare-ups enough.

I was so upset by this appointment, that I phoned up my consultant’s secretary in tears and she managed to get me an appointment with him. At least I hope it’s with him. I can’t count the number of times I’ve turned up expecting to see Dr S. and ended up seeing a registrar instead. So, yes, I’m anxious about whether I’ll even get to see him.

I’m also bringing along a couple of bits of scientific research papers with me that I wanted to discuss. I found one to do with diet and palindromic rheumatism. When I showed the horrible consultant the paper, he barked at me “how did you get hold of that? you’re not supposed to have that!” and refused to read or discuss it rationally. I’m hoping that Dr S. will have a more mature attitude.  I think my symptoms are pretty complex, so I think it could be tricky to prove a link, but I did want to discuss it anyway.

I am also bringing an abstract of a paper about a type of antibiotic. While I was living overseas in 2007/8 I was taking a type of antibiotic used to stop you getting malaria and I had fewer flare ups. Now, this could have been down to many many other factors – different diet, being under a LOT of stress, the good weather – or a combination of all of them. But when I did a search on the internet I found out that this antibiotic is sometimes used with people with rheumatoid arthritis. So, I wanted to discuss this with Dr S too.

With only a short appointment allocated by the NHS – 15 minutes – I may not get the time I need to fully discuss or consider these options. So that makes me nervous too. The last horrible consultant had told me off for taking up too much of his time. But how can I fully appraise the implications of new treatments, discuss pain management AND discuss what has been happening in the previous six months in such a short space of time? It’s hard enough with a consultant who has seen you before. Even harder with one who has never met you or read your notes and goes over a bunch of treatment options you’ve already tried. At least Dr S. has seen me before, so hopefully we can get straight down to business. I hope.


5 responses to “4 days til next rheumatology appointment

  1. I completely understand where you are coming from. And dont you find that when your appointment does take longer you are the one ending up feeling guilty. I know i did at my last appointment – after going in late I was then in there for 40 minutes. Discussing management of my arthritis whilst drug free in order to conceive is not a quick chat. Remember your rights at your appointment and explain that you need to discuss these things as you are the one having to live with the effects of the condition. Good luck x
    p.s. feel free to look at my blog too and find out a bit about my story.

  2. Good luck with trying to convince the doc about antibiotics! There is a site with info and a very active bulletin board, http://roadback.org/

  3. I know exactly where you’re coming from. Don’t give up. I’ve lived with a mild form of this for 20 years. It’s incredibly frustrating to have to explain why you can’t shake hands from pain or why you’re limping a few days and all you can say is “I have this thing and the doctors don’t know what it is.” Make your doctors get informed, and if they’re unwilling, find another doctor. It’s one thing for them to disagree with a diagnosis, but unacceptable if it comes from a place of ignorance. Doctors are not the gods they think they are.

  4. Loved reading your blog, so nice to relate to someone else suffering with PR. I was diagnosed in June of this year, have good days and bad days. Wishing you all the best with you appointment.

  5. Thanks everyone for your comments. I shall report back after the appointment. I’m making sure I have everything written down that I want to cover.
    Shazzy – I guess the best thing about PR is that we still have good days amongst the bad. Today it’s somewhere in between with tolerable pain in my fingers.

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