Going to GP at 4pm - working out what I need to say - is this a big deal?

[Weegle]

Quite long and complicated so please bear with me!

Going to doctor later to dicuss a chronic condition. I was diagnosed 15 months ago but a new consultant is now doubting the original diagnosis. I should add this is fairly serious as I have been rendered disabled by it. Fair enough I want a correct diagnosis but new consultant is saying that I present with all the symptoms of original diagnosis and in 5 years time it may be proven that I have this disease but because I don't have the genetic history for it she's not going with that at the moment. Consequently I won't be given the key drugs I had previously been put forward for (I should point out these cost 10k per annum, so that's why I wonder about her motivation for not wanting me to have them) - these drugs would slow and halt deterioration. Without them if I DO have the condition I will end up further disabled. I left consultant's completely confused. She is keeping me under her (rheumatology) despite saying she doesn't think it's rheumatic - so I don't understand why I'm not being referred back to orthopedics (where I started two years ago). She's precribed different anti-rheumatic drugs - why, if it's not rheumatic? She said she was prescribing me 7.5mg of one drug but the actual prescription turned out to be 10 micrograms so I haven't taken it yet but have run out of my original 5 micrograms. I don't have confidence in her, especially given she made a simple mistake over a prescription, so what about the diagnosis? I'm going to the GP to discuss it because I don't know where else to turn - but should I just put up and shut up and jump through the hoops she wants me to? But if the original diagnosis is correct and I lose more time then more damage will happen and I could end up wheelchair bound. I'm so wound up and frustrated that I feel like I'm back at the beginning. Can the GP do anything? I'm worried I'm going to burst in to tears on him because I'm so frustrated by the whole thing.

I think you should tell your GP the same as you have posted here. Your GP may be able to explain to you what the consultant meant, or if they dont know maybe arrange to get you seen again by the consultant so that she can explain to you. Might be worth phoning the consultants secretary to see if the consultant could call you back and talk over your concerns?
Dont worry if you cry, its understandable.
Good luck.

Thanks - I phoned the consultant's secretary about the prescription error and the consultant never called back. I rang again the the secretary said to speak to the GP. She refused to make me another appointment before July as she said there is nothing else she can do until I've tried this other drug. Which I can't take whilst TTC - which we want to do ASAP but I'm in too much pain to consider that at the moment so we're in a catch 22 and I feel the consultant is wasting my "fertile" age!

Write down the points you have just made here. The basics, quick note not long speech

• diagnosis? Right or wrong?

• could be proven in 5 years

• drugs to slow deterioration

• rheuma drugs, when not rheumatic?

• prescription mistake

Try and stay calm and present your case without getting too upset.

Say you are unhappy with the consultant's diagnosis.

You would like a 2nd opinion.

You have the right to question the consultant, especially as she has reversed a previous decision and the consequences are extremely farreaching for you.

Is there perhaps a Rheuma society where you could get info from other sufferers, perhaps someone who has had similar problems?

Thanks Kindersurprise - I've jotted it down. Thing is if he does refer me for a second opinion I know that will be back to my first rheumatology consultant (there are just the two of them in my area) and he's the one who made the original diagnosis. So I don't see how that will work but don't see what option I have. Will try to be brave, DH is coming home early to come with me so that should help as when I get flustered I just don't say anything.

If he sends you back to the original consultant, that is even better. He knows you already and will be more inclined to stick to the original diagnosis.

Good luck.

Thank you. Just got back. He was very supportive and is going to ring the consultant who has changed the diagnosis and question why on my behalf. He's also going to try and see if he can get me seen by my original consultant again. So that's cool, something's being done.