Hello again a few questions and thanks for any replies & I hope you are doing OK today

Jewels1973

Hi everyone, hope you aren’t in too much pain today.

I’ve gone down the private route to find out what’s wrong with me, basically I’m in immense pain all of the time it’s got worse, it started suddenly in March 2022. I now wish I had gone on the NHS because 14 months later I’ve just been sent round in circles. My friend who is a pain consultant has told me that the Private Rheumatologist did maybe 5 percent of what she should have done for me. She never even touched me. My friend has RA which is what my doc thought I had so she does know what she’s talking about. I’ve had an MRI done on one wrist even though my pain is in all my joints and have told everyone this. Then out of the blue this week my private healthcare provider emailed me a short email saying I could not be covered now for anything to do with arthritis or RA because I have a long term condition and they treat people with acute conditions. Weirdly it was the same day as me and my friend came to the decision that I would go down the NHS route if I could. My inflammatory markers are high. I cannot hardly walk in the morning and walking is hard all day. I religiously do hand wax baths every day. I cannot close either of my hands. The pain is terrible as I’m sure all of you know. Sorry for rambling I’ve sent a letter to my GP in the hope that I can be seen by an NHS Rheumatologist. I had a question to ask on average how long would I expect to wait to see an NHS Rheumatologist? I live in the West Midlands. Can anyone tell me their story of being diagnosed with RA? Or any other Arthritic condition? I’ve been signed off work all this time & I just want to get back to some form of me whether I have RA or not. Could you tell me what happens at an NHS Rheumatology Appointment?

Thanks for any replies & I really hope you are all doing well today or whenever you read this.

Much love Julie x

yaz239

Hello @Jewels1973 ,

Welcome to the online forum where all members are supportive and where I'm sure you'll find some advice from other members living with arthritis.

The struggles of arthritis can be challenging so it is useful to know that there are others going through similar conditions. If you take a look on the forum you will find other peoples stories and useful advice.

Here's some information about rheumatoid arthritis- it can be helpful to learn more about the condition to understand the challenging side effects.

Rheumatoid arthritis | Causes, symptoms, treatments (versusarthritis.org)

Thanks, Yasmin

Jewels1973

@yaz239 Thank you so much for replying and I will have a look at the link you have included. Thank you very much it really is very much appreciated. Julie x

Sprotty

Hello Julie,

I have been recently diagnosed with RA. I was on waiting list was told in January my appointment would be up to 51 weeks. I decided to go private. Best £250 to see a Rheumatologist consultant. I got all my bloods done at the doctors and managed to get X-rays through them, so at appointment I had a copy of everything sent to him. He said because it was early stage, important to get treatment asap. So he contacted my GP to say I need an urgent appointment. GO who then pushed for an urgent referral. It was2 weeks later was seen by NHS Scotland RH and now getting treatment. Hope you have some success. Good luck!

Fif

I think waiting time seems to vary a huge amount depending on where you live. When I first presented with symptoms to my GP practice, I was first seen by a practice nurse who then felt I should see the GP. This happened at the same appointment. He was so concerned about my swollen hands, he gave me a letter and told me to go straight to A&E with it. I was then seen by a number of different people who did a range of tests and decided it was most probably RA. I was then referred to the rheumatologist. This was end of October 2021. I was offered an appointment at the end of November but got a cancellation so was seen at the beginning of the month. Judging by what I read of other people's experiences, I think this was all pretty speedy and I will be forever grateful to the GP for his rapid response. Once I started on methotrexate things settled down quite considerably and the Rheumatology department seems to be on the ball, with nurse phonecalls and consultant appointments all happening as scheduled. We're in the Scottish Borders. I hope that once you get into the system things work out well for you.

Jewels1973

@Sprotty Thank you so much for that I’m sorry you have been diagnosed with RA but I’m glad that you managed to get seen seen so quickly. That gives me some hope that it might not be as long as feared. I can’t close my hands nor walk very far at all. I will most definitely push for an urgent appointment with the NHS. Thank you so much for your support it means an awful lot and thank you so much for telling me your story. Hope things continue to move quickly for you. Julie x

Jewels1973

@Fif Thank you for the lovely reply I get the swollen hands even though I do a hand wax bath daily. I’m so glad you managed to get an appointment. Fingers crossed my GP feels the same way as your GP did. He did say I should be seen urgently last May and I wish oh I really wish I had gone down the NHS route then. I suffer from anxiety and thought going private I would be seen more quickly and things would go quicker. Fast forward to end of July 2023 my private healthcare providers have decided in their wisdom I can’t have anymore treatment privately even though I’ve only seen one rheumatologist who didn’t even touch me, then a few physio appts and a hand consultant who didn’t know what to do with me. Sorry I rambled a bit then. Thank you for taking the time to tell me your story I really appreciate it and yes let’s hope things get going soon for me. Thank you again. Julie x

toady

Hi Julie, just a quick hello (usually to be found lurking in Val's cafe, as you know, will pop in & say hi in there later too - let us know whether you are milk 2 sugars etc 😊).

Sorry you have had such a long route to diagnosis and do hope the NHS is the better way for you now, and that you can get a referral asap. I didn't have the best first experience with a consultant but that was partly clash of personality, in terms of being referred I didn't have too long a wait (this is c.20 years ago, eek) and the consultant would have started me on DMARDs based on blood results and my symptoms, so they were efficient. I later saw a 2nd consultant which was much better for me and started on hydroxychloroquine (which was a bit of a compromise - I was resistant to trying one of the 'bigger' DMARDs - & I accept was probably not the best approach to hit the inflammation early, but stood me in good stead later as it counted as one of the 2 DMARDs I had failed on, in order to qualify for biologics which is where I am now).

If you have or have had a high ESR (and possibly CRP?) these are the inflammatory markers they will look for again, I expect your friend is able to be helpful in this sort of line from experience. I don't know if you were ever tested for 'rheumatoid factor', one of the newer tests you may have too is the CCP antibody, which is quite accurate apparently. Are your joints pink and warm as well as painful/swollen by the way? Best of luck with your diagnosis, let us know when you hear anything. Assuming it is RA, methotrexate was not the drug for me in the end but I tolerated it ok (in injectable form), there are other DMARDs and then biologics, more choice these days than when I was diagnosed. All the best 👍️.

Jewels1973

@toady Thank you so much for replying it’s made me feel less on my own in this whole experience and thank you so much for explaining what you went through to diagnosis. I saw Val’s Cafe last night it looked a lovely place 😊and I’m a fairly weak tea no sugar kind of person!! Well my docs surgery got in touch with me by text today and they can’t refer me even though they have everything I’ve had by letter so I’ve got to wait another 10 days till I can have a telephone consultation with my doctor and hopefully then he can refer me. The first consultant I saw well the only one didn’t even touch me & now I’ve found out she was supposed to check and feel all the areas I am in pain with eg hands, wrists, knees, ankles and fingers so I’m looking forward to eventually seeing someone that will look at me properly. My ESR last time they checked was 72 which I understand is high. Yes they are pink and warm where I have the pain but no one has checked me anywhere but my hands and fingers. I’ve had a physio tell me I have osteoarthritis but she wouldn’t write it down, the 1st consultant the one that didn’t examine me said it was probably diabetes related so I went to the doctors and found out that my HBAC1 had halved & that I had lost 4 stone since 2018 and the hand consultant I was sent to said it was arthritis so none of them seemed to have agreed! I’m having to fill in some forms for the DWP as I haven’t been able to work (I’m a secretary who works from home I can only type with this one finger I’m doing this with) so I do want to get back to work I just need a diagnosis and maybe some of the things you’ve mentioned. Sorry I’ve rambled on I hope you aren’t in too much pain and thank you for telling me your story as it helps me feel less anxious knowing I’m not the only one & maybe that I might get seen soonish. You are very kind. Thanks again. Julie x

rebecca1001

I was in terrible pain last year around december time, I could hardly walk both my knees were swollen. I manage to push for an urgent referral in January and I got a Rheumatology appoitment this July. I have now been diagnoised Auto-Immune RA. Iv been lucky as there trying to put me on a different medication long term fingers crossed it will help me. -Becky

toady

You're very welcome, I have had a lot of help & support from this forum myself over the years. Once it's obvious there's something wrong all most people do want is to know what they are dealing with, so I hope you can get a better idea what's going on (no-one hopes for someone to be diagnosed with an inflammatory condition of course but you know what I mean!) I know I expected diagnosis to be simpler but of course there are various things that can cause inflammation & symptoms and they have to be ruled out etc. Good luck with the phone call!🤞oh and sorry I had already read about your t2 diabetes so fairly weak tea no sugar it is ☕️.

Jewels1973

@rebecca1001 I’m so glad you pushed for an urgent referral thank you for telling me your story and I’ve got all my fingers and toes crossed that you are on the right medication now I’m sorry you had to be in pain for so long before you got your appointment and I’m really sorry it turned out to be RA but I’m pleased the medication is working for you. Sending love your way Becky I’m definitely going to push for a referral as today I found out I’m even having to wait 11 days to get a telephone appt with my doctor to even talk about it even though last year we talked all about it and he has all the necessary paperwork. Really thank you Becky. Julie x

Jewels1973

@toady You are fab yep got Type 2 diabetes so weak tea no sugar 😊. That’s exactly it you have hit the nail on the head once you know you have something you just want to know how to handle it and I’m so glad you’ve had lots of support from other group members. I know exactly what you mean don’t worry you just want some help and thank you so much for the good luck with my telephone conversation. After all I’ve read and all of you being so kind in telling me your stories I’m definitely going to push for a referral as quickly as they can do one. You all really have helped me. Shared stories are great so thank you from the bottom of my heart. Julie x