Why wont GP allow me to see RA soecialist!

Bones, joints and muscles
1

My joint pain and imflammation started over a year ago and all bloods came back negative. At this point GP refered me to early diagnosis clinic. Where my bloods came back negative and specialist said my hand swelling wasnt enough to make a diagnosis.

Managed to get a referal to orthopedics who said i certainly have immflamatory arthritis and to take paracetamol and anti immflamatories on a more regular basis. But no further help to diagnose what immflamatory arthritis. No 'decernable degeneration' noted on my xrays.

Have referred myself to physio and podiatrist as i can no longer walk bare foot. I have had to increase the size of my rings as swelling is so bad in hands. All pain and inflamation is symmetrical and i have a 'strong autoimmune' family history according to the ra specialist. Immflamaotries arent always reducing my swelling. Hands, wrists, knees, ankles, feet, hips and shoulder blades affected. Still getting negative bloods results and cant get past my GP to see the so called special interest general surgeon that make diagnosis in the area i live in.

So do i go to the GP AGAIN and insist on being referred to specialist? Should i ask for scans rather than xrays? Is it ok to just keep taking anti immflams and pain killers and trust the GP to send me to specialist for proper diagnosis and DMARDS? How bad do my symtoms need to get?

2

Sorry to hear about your problems.  Perhaps it is the case that they feel you have a diagnosis and so there is no need to refer onwards, but I'm certainly no expert here.  My experience was similar, despite a strong presence of autoimmune Conditions, bad joints, swelling, fatigue etc, I couldn't get referred onwards to rheumatology for love or money.  My advice would be to make a pest of yourself.  When I was really ill and could not wash, dress or feed myself properly, my doctor would just send me away to monitor and I would come home and cry.  Sadly I had to wait until I was actually feeling  better to gain some gumption and challenge decisions, ask questions and discuss agreeable treatment plans.  I didn't go away and I eventually got my rheumatology app although it took about 7 months. I am still working through things, have ongoing issues and not 'there' yet, probably like most people but I really do appreciate your frustration about the GP as a gatekeeper. ... Stick at it and all the best :0)

3

Field mouse it can take a long time to get sorted don't give in keep pushing be a right bloody pest every time something happens try to see your gp so she/he can see with there own eyes what is wrong be strong eventually things will work out but you must make them see you are not going away god bless and take care ps if you don't blow your own trumpet no one else will .

4

I'm really sorry you are having a frustrating time with it. My advice is that the squeaky wheel gets the oil! It's your health here and I would suggest you definitely see the rheumatologist and I'm sure your GP will give a referral for you as you are in pain and you need to get trearnent. Good Luck with it. :-)

5

You are entitled to change your GP. So do so. Then insist on seeing a rheumy.

The problem to some extent is an enormous shortage of rheumatologists, especailly tough in more rural areas, so they are reluctant to refer you 

if they don't think it is absolutely vital.

However, if you change GPs on that condition, someone might sit up and take notice.

Good luck!

6

Yes, all the evidence is that early management improves outcomes in all inflammatory arthritis - never mind reduces the pain burden for the patient.

I have an inflammatory arthritis that a GP can manage well in that the only option for management is prednisolone and there is no joint damage to worry about. But if it weren't that particular option I would expect to be under a specialist unit for diagnosis and then at least once a year for follow-up. GPs cannot use the best medications, only specialists can do that.

Insist you want to be referred to rheumatology, go to a different GP in the practice if necessary and if that doesn't work even after an "interview" with the practice manager, change practice.

Paracetamol has been shown in clinical studies to be no better than placebo for pain management and it poses risks for liver and kidneys (that's newish). It has no inflammatory effect - and long term use of NSAIDs (ibuprofen and its friends) is not good for stomach and cardiovascular system. You shouldn't be left on them indefinitely.

7

Hi Fieldmouse

I would say you need a new GP, one who will take you seriously.  Also go to the GP when your symptoms are worst and dont wait for them to calm down first no matter how much you just want to rest.  

A GP can only treat what he/she can see or proof.  My GP has been fantastic, I went to see him when I could barely move.  Muscles in both my legs and arms where scorching, I could barely move, you could see the tierdness on my face despite sleeping well over 12 hours a day.  i was out of breath and had also told him about the symptoms he couldnt see. 

Joint pain is hard to diagnose there are some conditions which dont show up on xRay but still produce inflammatory results. so dont be put off. 

From the start my GP knew I was/am unwell. we both thought it could have been viral to begin with, and then possibly chroinc fatigue but then other symptoms quickly developed. As the scorching muscle pain calmed the joint pain came on, it was a gradiant between the two.  he said it is likely that the joint pain was always there but masked under the muscle pain.  

Anyway ...   he has also proved an inflammation with very high LDH levels. with the extreme levels of fatigue, muscle and joint pain he started to think towards an arthritic condition, and at the begining of the year I developed a butterfly face rash - tested for Lupus came back negative.   My GP still strongly suspects that I've Lupus, there is a history of both RA and OA in my family but not lupus so we've a little bet on - whose right.    I think its RA. and he thinks its Lupus. 

My GP also said that paitents can test negative and there is such a thing as zero or negative test result patients and that a Rhemy will be able to carry out more specalist tests. 

I've been refered more then 6 weeks ago, although I've also been assigned on I still dont have an appointment as yet.  last night my GP said to give them a call today. 

Im telling you this because it woudl seem you have lost hope in your current GP, and to assure you that there are some really good ones out there. 

You know your body and when you are well or not.  Get a second opinion, but do not expect the new GP to have looked at your notes previously - tell them everything, 

Hope you fell better and that this helps

warmest regards

Andy x

 

8

Money