am really confused.

[heather29]

Hi am really really confused.

was diagnosed with sero negative non erosive RA in 2012 but did not respond well to mtx, cizmia sulfa and toclizumab, i am really sensitive to meds and had problems with all four. Docs are thinking because i did not respond to meds ultrasound showed no imflammation and mri did not either i cant have RA, I have swelling in hands ESR IS RAISED 34 and then last month B12 went through the floor and needed B12 injections. I felt i was being fobbed off at my local hospital so asked GP to transfer me to a london hospital and had an appointment with them yesterday ( i felt i was not really listened to and am having to go through all the same tests again that i have recently been through)

am expericing pain in hands, swelling in hands warm and swelling in ankles with pain in feet which has affected my mobility.

i am on the verge of giving up and its affecting my mental health - has anyone else experinced this and how did you get through it.

heather.

[Hidden]

Yes I'm in a very similar boat to you on almost every front Heather - except that my ESR is usually much higher than yours - but I think these markers are completely unique to each of us so your 34 might be normal for you or not - your doctors will look at in the context of your history and symptoms.

Like you it really does affect my state of mind - feeling disbelieved, feeling I have to fight my corner and learn more and more just to challenge my doctors' indifference. Mine is still called RA but I'm challenging this. I too have failed to tolerate four DMARDs and don't have swollen joints so don't qualify for the Biologics unlike you.

Part of me just thinks I'm going to re-diagnose myself with Fibro soon just so I can try to self manage it and avoid trying any further immunesuppressant drugs. Three have been formally registered as allergies and one, MTX, was just too cytotoxic for me.

I'm currently on Prednisolone and it's taken my ESR down from 70 to 18 in a few weeks so I guess this proves that there is something inflammatory/ autoimmune going on. I wrote to my rheumy in the early hours (insomnia) explaining that I've had enough of being abandoned just because I'm very allergic and demanding that he rediagnose me or send me back to one of his colleagues to look at Vasculitis as a possiblity. He wrote back a short dismissive email which made me feel he hates me now. Not sure I care anymore!

I totally understand and sympathise with your feeling of wanting to stop the medicalisation of your life for the sake of your mental health. Can't really advise you but if you have Pernicous Anaemia/ B12 issue then you obviously have autoimmunity. Don't give up - don't let the disease win and don't let the medical profession dismiss you without fighting but equally try to find as much to divert you and use as many self help strategies as you can to get through it all. I see a councellor and it does really help - not least because she gets so angry on my behalf!

You are not alone I promise - there are many of us in the shaddowlands. Hang in there - all will become clear one day I'm sure. Twitchy x

[heather29 in reply to Hidden]

Thanks twitchy appreicate the reply. My B12 came back really low at the beginning of April, so have had 6 injections over a two week period, now they are every three months, so the next one is in august - the injections made me feel really rough - i have the swelling in my hands and in my ankles the weather when it is due to rain makes me feel worse and its the tiredness it started with fatigue then bang the hands have the symmetrical swelling in both hands and both feet.

Am glad a new hospital has agreed to take me on, so that is one battle that has been raging for nearly four months so have won that won with perisistence just have to keep plugging at it.

hope you get some support soon, take care now. x

[Hidden]

Hi Heather. I am going through a similar thing. Rheumy discharged me back to GP in April telling me bloods not showing inflammation even though I hadnt had a blood test for 6 months and last scan done a year ago didnt show sinovitis but did show erosions and as the 2 DMARDs I have tried and couldnt take because of horrendous side effects didnt work, I was told I dont have RA based on these things. I have asked my GP to re refer me which he has reluctantly done but the Rheumy has come back saying that their decision is correct but they will see me in 6 months to check again. They are very contradicting in what they say as they have also said I have refused treatment. I havent refused but I did question the way they wanted me to take Hydroxychloriquine without an eye check or take notice of what I told them about my blurry eyes and visual disturbances. As Hydroxy can cause eye problems I was extremely concerned about taking this drug but they dismissed my worries. I have just written to PALs (patient advice and liason service to see if I can get my med records changed as I dont want it on my records that I have refused treatment when I havent and I want a second opinion. My inflammation markers in blood test are not extremely high but are raised and I feel so rubbish. Everything hurts and energy sapped. I am sure because I have tried to stick up for myself they will try to give me anti depressants again. Anything but treat me for what is really wrong. I have osteoarthritis and they say fibromyalgia too but I have also been told by ENT that I have Sjorgens which I believe is linked to auto immune disease. Try to get your GP to get you a second opinion but make sure you have up to date blood tests etc. Dont let them fob you off. Good luck and let me know how you get on. Gentle hugs Joolz.x