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Autoimmune disease
Cancel Rheumatologist appointment or not? All advice welcome
wolfsthistle · 07/10/2021 15:36
Hello,
I have a private Rheumatologist appointment scheduled in the next couple of weeks and I’m really unsure whether it’s worth going to (and paying for).
Background- I saw GP in June after 3 periods over the previous 3 months where my wrist became completely stiff and painful for a week or so at a time before gradually going back to normal. I assumed I must have hurt it through some heavy work I had been doing in the garden but was concerned that it kept going away then recurring for no reason. GP didn’t think it was a soft tissue problem as it came on suddenly and not after any trauma and said the pattern of coming and going didn’t fit this. Basically she queried some kind of arthritis and asked me about other areas and there were a few other things she found concerning, eg dry eyes and periods of fatigue. I have a long history of lower backache but I’ve just come to accept this as my normal and never thought in terms of anything else.
She ordered a wrist x-ray and bloods and I got the results after about 3 weeks and they were basically normal except slightly low white cells. During that time my wrist had flared up again with some involvement in my knuckles plus I had a stiff and painful neck so she said I needed to see a Rheumatologist and did a private referral due to waiting times.
The neck pain has been an issue for two to three months and I have taken anti inflammatories at times for this. However my wrist and hand has gradually improved and is now about 80% normal. I can’t weight bear on it but most of the range of movement is back. This is partly due to input from a Physiotherapist. My neck was bad a couple of weeks ago but after 5 days of naproxen and further input from the Physiotherapist and ongoing exercises it has also really improved.
Long story short, Rheumatologist appointment is just over a week away and I’m currently feeling pretty good. My bloods were mostly normal. The recent issues and pattern were possibly concerning but I’m worried that they will wonder what I’m doing there if I see them as I am today. I’m tempted to cancel but also unsure.
Thanks to anyone who has read this far and if you have any advice I would really appreciate it. Thank you.
poblwc · 07/10/2021 16:12
I think it's still worth keeping the appointment.
I have palindromic rheumatism and between flares I am completely fine (including my bloods). I am on long term DMARDS which have helped lessen the frequency and severity of flare ups.
In the ten years I've been seeing a rheumatologist I think I've only managed to see them during a flare up once or twice.
Good luck!
wolfsthistle · 07/10/2021 16:17
Thanks so much for the reply poblwc. It’s really helpful to hear your experience. Do you mind me asking how the rheumatologist knows your issues are arthritis if the bloods are normal and you’re not normally in a flare when seen? I just wonder what they can go on for me when my bloods are fine and I’m still wondering whether I did somehow hurt my wrist and maybe my stiff neck was just a stiff neck. Not sure whether the referral is a fuss about nothing or whether I’m in denial. Thank you again.
nocoolnamesleft · 07/10/2021 16:21
Which would you regret more? If you spent the money, and were reassured that all was fine and it all settled. Or if you cancelled, and then it all flared up again, and you couldn't get another appointment for a while. Personally, I'd regret the latter more, so I'd keep the appointment.
poblwc · 07/10/2021 16:34
Essentially they took a long history from me (I had been having steadily worse flare ups for 18 months or so) in order to diagnose me. I had also had various x-rays and blood tests to check for other things/underlying damage.
Then there was a process of trial and error until they found the right drugs for me.
Throwntothewolves · 07/10/2021 16:55
I have rheumatoid arthritis. Like another poster said, I often don't see my consultant during a flare up as they come and go. I have gone private before when it was particularly bad and the wait was too long for an urgent NHS appointment.
If I were you I would go to the appointment. It's not a waste of time or money if you get to find out what's going on, even if it isn't anything to worry about that's better than not knowing.
wolfsthistle · 07/10/2021 18:25
Thank you all very much for your replies.
It is a good point @nocoolnamesleft I have thought if I cancel and it happens again I will back to needing to be referred again.
It's interesting to hear that others aren't necessarily in a flare during the appointment itself. I think I'm irrationally worried that they will think I'm wasting their time or be dismissive etc and that it might be an unpleasant experience (as some Consultants have this type of manner with people). I don't know anything about the one I'm going to other than that my GP chose to refer to them.
wolfsthistle · 07/10/2021 18:26
Also in terms of the cost, I am not stuck for money though obviously would prefer not to wast a couple of hundred pounds on something I don't need. And as I'm feeling so good right now it's easy to convince myself that it could be better spent on something more fun!
choirmumoftwo · 07/10/2021 22:50
There are types of arthritis which present with normal blood results (sero-negative). Diagnosis is made largely on history and presentation.
There are also specific tests which GP's don't always do but a rheumatologist will.
I would definitely keep the appointment, especially with current NHS waiting times.
Good luck.
wolfsthistle · 08/10/2021 11:03
Thanks @choirmumoftwo I appreciate the reply.
I’ve actually woken up today with worse backache and stiffness than I’ve had in quite a while so that’s definitely pushed me more towards going.
Whenever I have taken naproxen the effects seem to continue for a while after I stop taking it then things kick in again. I don’t know if that’s even possible but I think I get lured into thinking I’m fine when I’m not.
wooliewoo · 10/10/2021 11:25
@wolfsthistle
Do bear in mind OP it may be considerably more than a couple hundred pounds in rheumatologist wants to do some more tests. You pay for everything separately in private healthcare.
Good luck and I hope you get some help with your symptoms.
wolfsthistle · 10/10/2021 15:18
Thanks @wooliewoo that’s a good point. I will see what they say at the appointment about whether they’re suggesting any other tests. I’m guessing they might suggest additional blood tests beyond what the GP has done already but I’m not sure what else they would want beyond that.
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