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Hi Everyone out there

I've got a Rheumi appointment after wearing down my GP, not sure how to deal with it coz I'm not good with Doctors. I'm assuming that going in and talking mostly about the things which are affecting my work is the right tack to take, what do you think?

Actual biggest difficulty I have is Psychosis which means I think I'm God, but have managed to work through this for 20 years, or at least mostly; also on good neuroleptics so can't complain. However the pains in my joints are now intruding on my working life, was diagnosed with psoriatic arthritis 2 years ago in my neck and have been left with grating pain on turning it - sometimes feel when I'm driving I won't be able to turn my neck back once I look over my shoulder.

Just been diagnosed with psoriasis again. Getting more and more migraines/headaches. Stiffness in joints also affecting my ability driving, which is reasonably dangerous as I have 150 mile round trip to work.

Would appreciate any advice around how to tackle this 1st appointment, without a diagnosis I feel like a bit of a fraud, don't feel able to talk to my partner and friends about my fears coz feels like whinging - feel quite alone in this and not a little bit sad...wish I could be a bit more positive.

Any suggestions how to get the best out of my appointment on 2/1/09?

Thank you for reading this far - you are strong indeed!
Beth:sad:

 

[LolaLola]

Hello Beth,
One of the first things I would suggest is that you look for any family history of auto immune conditions. That would be a good starting point.
x Lola

 

[cemc]

For a start, make yourself some notes - just short bullet points.
As Beth said, look for family history of autoimmune conditions (rheumatoid arthritis, thyroid stuff, coeliac disease, lupus, etc). Then make a summary list of the problems you have been having, perhaps noting how long you have had them for, how severe. Its hard to know how to deal with the psych stuff. If you don't mention it, then they will find out (from your notes) and may put everything down to that. If you do mention it, they may still discount a lot of the physical stuff. I'd probably choose to mention it right at the end of going through the physical stuff. Say that you have had psych problems but they are well controlled by drugs at the moment, and that you feel you are well able to distinguish physical complaints from psychological distress.
The other thing is to take someone in to the appointment with you. Someone you know, and you have explained all the physical stuff to before so that they know where you are coming from and can help you out with reminding you to say stuff. they can also act as another 'rememberer' to help you remember stuff you were told by the consultant.
Ask if they are going to do any blood screening tests. You should at least get some of the general screening tests for autoimmune disorders. I'm not sure what has pointed you towards lupus, but there are other disorders like psoriatic arthritis, etc, and all will get the same sort of initial blood tests done.

Good luck with it all.

 

[nicky00]

Hi Beth

Psychosis may be something do you think that a doctor may think he needs to take into consideration with making a diagnosis.

If that is the case , then I would take somebody else into the appointment with at least the hope that they can support you and be beneficial all round.

You could also write it all down and pass a list of symptom, historical info to him , regardless of how the appointment goes.

I would also read up as much as possible ( posting here is brilliant) so that I felt more confident for my appointment.

Most of us have felt the hurdle with this disease of trying to convince the doctor we are ill.

Remember that.

Good luck

Nicky

 

[birdie]

write a list of everything that you have had no matter how trivial it seems to you, also how long you have had these symptoms and I am sure you will work through them and get some positive result.

Good luck and hope everything goes well for you.

 

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Thank you for your advice

Haven't checked the replies as yet, have been a little swamped with work and family. Also was very nervous about reading the replies, this all seems like such a big deal! Was very afraid of allientating/offending anyone re the God thing - delusions aren't a picnic but you can learn to live with them.

I was first investigated 20 years ago for MS when I had neuro symptoms but then went mad enough to end up in Psych Hospital; have gone mad enough again another 3 times but all three have been proceeded by at least 3 months of dramatic physical symptoms. I have now been left with the residual hangover of thinking delusional thingys. When I'm mad blood tests show I'm ill, but I don't know in what way, don't know what blood tests, am too mad to ask! Am too mad to care!

Mum's got sticky blood, arthritis; Aunts got fybromyalgia, Aunt and Uncle have got diabetes. I've got a good few lupus symptoms spoken about on this site. It's splendid advice you've all given me, for which I'm very grateful and will arm myself with a piece of A4 full of writing about these symptoms and family history, I accept I can't avoid the Psychosis thing and will mention it but it is a good idea to tag it on the end.

It remains to be seen but moving forward in any direction is progress.

Thank you again for your help, am nervous about 2/1/09 but fingers crossed I will be able to have an adult conversation with the Consultant and he won't make assumptions just because I am clearly mad!


Stay well one and all, special Chrimbo wishes to everyone!!
Bethx