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Hi Terri

Im really sorry you are being messed around by what seems to be quite an incompetent Rheumy. Clearly she is bad for your health if she is not following the progression of your disease. It sounds like you would need to have a tape recorder with you during your consultations:(

I think its a very wise idea to search out someone else but remember it is no harm to remind them what they had planned to do at your last appointment. Its a fact that doctors do miss things and can forget things from one appointment to the next so if you take notes you can then question why the 'plan' has changed from the previous appointment. For example perhaps you could have asked if she had now changed her mind about the biopsies and if so why? I know its not easy to advocate for oneself in these situations but sometimes we gotta just take a deep breath and ask the questions.

I had a similar experience over a year ago when I asked my Rheumy for a letter in writing stating my diagnosis (I needed it for a mortgage company so that they could officially refuse me protection cover and then I could make the choice as to whether to apply for an insurance waiver). She then said to me that she hadnt diagnosed me with Lupus but was still leaning towards UCTD. I was really taken aback because my GP had already received a letter from her some months previous stating that I was diagnosed with Lupus:rolleyes:. She had also told me herself that I had SLE and I was, at the time, taking part in a research study in the Dermatology Department of the same hospital because I had SLE! :rolleyes: :rolleyes:

Anyway she rambled on more or less talking to herself and musing about how we didnt know enough about these diseases and how at some stage we would learn more about what the specific antibodies meant and that probably lots of peoples diagnosis would be tweaked or changed, etc etc etc. Thats all very well my dear but here I am in limbo land and needing an important letter for my insurance company who dont recognise UCTD and it would have presented me with enormous difficulties trying to sort out my mortgage. :rolleyes: I spoke to my GP about it and he poo pooed her ramblings. He had the evidence on file as well as various blood antibody results - anti DS DNA, Anti Ro, ANA, etc.

He advised me to contact one of her Registers (there is a team of 'underlings' under ner). I did that and lo and behold I received a letter stating that I had SLE. :rolleyes: So I know how frustrating this kind of thing is Terri.

Let us know how you get on with the other referral. I really hope you dont have to wait 18 months:eek: If you end up going back to the other Rheumy, just stiffen your spine and make her answer the awkward questions.

Lots of love and strength to you and I hope you can get some better treatment soon.

Joan:rose:
 

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Hi Terri

What a wonderful GP! It makes such a difference in our care to have a supportive GP. And thats excellent news about your insurance company :)

I sure can understand not being able to advocate for yourself given the circumstances of that last appointment:mad: Well done though for picking yourself back up again and taking on the fight!

Luv n stuff
Joan:rose:
 
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