Re: Confused, need support (long, sorry) UPDATED

March 31, 2011

Hi again

Thought I would update as I have had some positive developments and am feeling

much better, after being at such a low the other day.

I spoke to my Rheum again this morning and she was really helpful. She let me

know that the reason making a diagnosis for me was so complex early on was that:

a) I also have a back issue which causes chronic pain but she initially wasn't

sure if it was spondyloarthropathy or a completely separate issue (has now been

proven to be not caused by arthritis but can sometimes be exacerbated -more

muscle spasm etc, when my arthritis is very active).

When I first saw my Rheum my arthritis was very mild and isolated to a few

joints and my blood tests reflected this.

Today she let me know that over the past 15 months she has seen my arthritis

escalate very dramatically and quite aggressively. Even though she had told me

that she felt my inflammation was becoming much worse she had never really made

it clear that this changed her assessment of my overall condition over time

(perhaps just a miscommunication).

I explained to her today that the pain management unit were confused about my

lack of specific diagnosis and were questioning that I had arthritis at all and

she explained that she would absolutely be happy to use the label of RA for my

arthritis and that it is definitely not mild but is actually quite serious,

hence the need for aggressive medication.

She also clarified that while my latest blood tests do show some changes in

white blood cell count it is not to a level that would pose a risk to me. She

explained that perhaps the pain management people don't fully understand

arthritis and the way that these medications work, which had been my gut feeling

when I met with them.

I was always quite confident that my Rheum would keep a close eye on my blood

test results and take action if required but the pain management team were quite

alarmist in their interpretation of my blood test results and this made me quite

worried.

My Rheum also clarified that the reason no bone scan was done earlier on was

that I was still breastfeeding when I first saw her and naturally a nuclear bone

scan would not have been safe.

I feel so lucky to have such a caring and conscientious Rheum.

Thanks to those who replied to my other message.

Theresa -I have read about vitamin D too and decided that it is something that I

would like to try as I know I have had low levels in the past.

Thanks again

Ali

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