Worried about rheumatologist being dismissive

yamyam

Hello

I'm waiting for an appt with a rheum on 17 April, and I'm trying not to get myself into a tizz.

Basically, I've been "unwell" in one way or another for years, and pretty much been fobbed off throughout. I had swollen ankles on and off for years (literally, years) and the GP said they looked fine to her. But they were completely different to my "normal" ankles. I had lymph nodes up everywhere for years and the Drs said I probably had a virus and that I was so slim, my lymphs would show up more. I did have some blood tests with a hematologist that showed high inflammation and something weird with my white blood count, but she said it wasn't HIV or lymphoma (their suspicions with that type of bloodwork) and that I must have a mystery virus and packed me on my way.

In the intervening years I have been experiencing severe burning pain in my hands and hips. I have developed OA in my left ankle and my right big toe. I'm waiting to see a surgeon for the OA. Since being referred to a surgeon for the toe and the ankle, however, my "inflammation" has got so much worse.

About 3-4 weeks ago my knees swelled up and it felt like my kneecaps were going to pop off. I could barely walk, and when I did it was a serious exercise in concentration - it was like someone had replaced my legs with someone else's, disabled, legs. My thighs were on fire. Stairs were nearly impossible. My ankles also swelled up as did my left foot. I went to the Dr - the office is a quarter of a mile away and I could barely walk it - and she examined me and said she thinks I may have an inflammatory arthritis as well. She's given me diclofenac 150mg and referred me to the rheum, which as I say is on 17 April.

I've been on the dic. for a week and a half now, and it is helping. The pain is lessened but my legs still don't feel like "mine". I wake up and my hands are stiff (not that you can SEE the stiffness, they do still move) and my legs, knees, and ankles are stiff also. The balls of my feet feel like they are walking on rocks when I first get out of bed. My wrists have been painful and just the tiniest bit stiff for some months now also, since about January.

I went for my hand x-rays this morning - I was actually having a "good" morning hand-wise, which kind of annoyed me! - and now I'm waiting for the rheum appt I am very worried about being fobbed off, which is how I felt when I saw the hematologist some years ago who said I must have a mystery virus and sent me on my way. My uncle has RA and I have realised my dad must have had undiagnosed PSA as his symptoms matched it exactly (he passed away some time ago). Therefore I think an RA diagnosis would make sense for me. But I have been through this before where I get a referral, the Dr semi rolls their eyes at me because I'm young (now 30) and to them over-reacting, and then I get sent off again (see: hematologist), or they find there is something wrong (e.g. I have loads of breast lumps, all benign, I've been in four times with them as they appear, and the Drs think I'm feeling nothing, then there's a scan and tada - benign lumps really are there) but because they're benign I still get this weird *pat on head, see, you were over-reacting* demeanour. I'm really worried this is going to happen with the rheum, that I'm going to get a negative blood test and they'll just send me on my way, especially since the dic. has reduced the swelling in my knees.

My GP said that even if the blood test is negative, I may have an inflammatory arthritis. I'm just not sure how to propose this should the bloods be negative without sounding like a hypochondriac, especially since the diclofenac has taken the edge off. I don't WANT to have RA, but at the same time, these symptoms are here and proving very difficult to live with - a diagnosis would mean treatment. The OA biomechanics Dr was very dismissive - stop running, watch my weight. I'm 5ft4 and 116lbs. There's nothing to watch. I don't want to have to put up with these symptoms with no help.

Apologies for the essay here. I'm lucky that my new GP took me very seriously and phoned around several hospitals to get me the earliest possible rheum referral, having examined my knees, but I really am panicked that I'll just be dismissed again as some over-reacting young woman.

Thank you for reading, whoever manages to...

helpline_team

Hi yamyam
Sorry to hear that you are having a difficult time getting things diagnosed.
It may be helpful to get the evidence clear - perhaps write a few notes to remind you? (You can't control what a doctor may think or say, but if you are clear in your own mind, that may be a helpful start?)
It seems that the inflamed knees were verified by the GP?
If they are still inflamed an ultrasound or MRI may be helpful, as they show some kinds of inflamed tissue.
If there were some blood tests that showed things - maybe write down those? (inflammatory tests; examples include: ESR, CRP but find out from the GP any that they thought might have been significant.)
Once that's clear maybe that will be helpful to you? - so you will see what supports your description of what's happened.
Then you may want to write down your symptoms - a list of headings may be better than writing sentences. It's just to jog your memory.
If you'd like a chat about things, you'd be most welcome to ring us at the Helpline on our freephone 0800 5200 520.
Very best wishes
Guy