What!? Not PA!?

dvaidr

I am staggered, following a letter I received from a consultant informing me throughout my time, (since 1998), suffering significant pain and presenting symptoms of psoriatic arthritis, it transpires that my bloods have never shown any inflammation markers, my x-rays don't show any signs of arthritis and a hard diagnosis hasn't ever been made!

I have been taking painkillers and anti-inflamms for all this time. I was on methotrexate for 3 years before it made me too ill and have just tried sulfasalasine with disastrous results. The sulfasalasine was prescribed by another, chosen Rheumatologist, when I effectively sacked the one who sent the letter.

The Dr sent me the letter in response to a complaint - he thought my problems were stress related! He had no prior notes, taken by other consultants over the period from 1998.

I also mentioned problems with losing my voice and asked if it could be related to the cricothyroid joints - this was dismissed immediately.

So, the upshot is that since I don't have arthritis, I will be demanding a diagnosis - let's face it 13 years should be ample time to diagnose something. I begrudge paying £600 a month tax for this kind of treatment. My God, I could have BUPA cover for the whole family!

It's an absolute joke and I think we'll be seeing more of this when Doctors get to manage their own budget. :evil

skezier

Hi David,

That seems a bit odd and very bad reflection on their diagnostic skills at least.....

Not sure what you are going to do about it but hope you can move this forward somehow cus well.... they have to sort them selves out re your diagnosis at the very least. hang in there and hopefully you will be able to get something sorted. Cris x

valval

this is awfull and do hope they find out what wrong and help you a lot of treatments the same for other things as well as arther so i could be they were hedging there bets with treatments. but they should know what going on by now i know it not easy as no two people the same but demand answers you have waited long enough val

dreamdaisy

I apparently have PA, but this was only 'diagnosed' after a bout of P. Xrays only ever showed inflammation in the synovial linings, my bloods did record raised inflammatory markers but I never had a positive rheumatoid factor - apparently PA does not show this anyway.

I suspect you need the pain dullers and the anti-inflammatories, the other drugs are the standard ones for RA and PA (they are treated with the same meds even tho they present differently - blanket bomb approach or what?) - unlike you I do tolerate the meth and sulph but they don't appear to do much. I think the sulph keeps the P thing at bay, dermatology told me that it was a treatment for it and for me it usually works on that front.

I was initially diagnosed with PVNS - pigmented villo-nodular synovitis but they changed their minds as I had no pigment in the synovial linings, so was re-classed as an 'inflammatory arthritis'. That stayed for four years, then the PA judgement was given, but they write RA on my blood forms.

Does it matter? I guess not. I have some form of inflammatory arthritis which is doing its thing in fine style at the moment, now I have reached the stage where I care not about the label but I will use PA for convenience. Knowing your enemy can help in fighting it, and we all know that there are many forms of this vileness which are very hard to categorise/diagnose - I think you have been ill-served but, basically, I think that rheumatologists don't know much about their chosen area of 'expertise'. That's my general conclusion after nearly 14 years of this rubbish. I wish you well. DD

carola

Sorry to hear about this.

I was initially misdiagnosed with Rheumatoid Arthritis and just knew that wasn't it.

I pestered them for different tests as through research thought I had SLE (a form of Lupus) and lo' and behold .... 5 months later I was diagnosed with SLE and PolyArthritis caused by the SLE.

So, I didn't have to wait so long for a correct diagnosis. Stress just makes symptoms worse so it is important for you to feel in control of your health (as much as we can anyway!) so I would say to keep at the docs for more tests so you know what your are tackling and HOW to tackle it.

I found that writing to both my GP and Rheumy did the trick as my requests were then in writing.

Good luck and keep us updated.

Carol

tillytop

Hello,

Sorry joining in late on this post but when I read it my flabber was well and truly gasted! I was interested to read what you said about losing your voice - I have RA and have had a problem with varying degrees of hoarse voice for many years and it has always been dismissed either as "probably inflammation of the voice box" or "not my department, you need to be referred to an ent speciailist if you want to get it investigated." I have learned recently that cryo wotsit arthritis is not uncommon, but it often not recognised for what it is.

Really good luck with pushing ahead with a diagnosis.

Thinking of you.

Love Tilly xxx