FED UP

hellywelly1

Over the last few months occasional extreme pain in some joints, Both shoulders both wrists knee and thumb after the second episode I went to see my GP who did the usual blood tests etc and seemed to think I had RA .He referred me to rheumatologist who I have seen today I am not sure if he believed me !! I have no pain today. He says he does not think that I have RA as the large joint are not usually affected but may have either an infection or virus! He felt my joints and gave me X rays of my chest and Hands. I now have to go back to my GP for more blood tests and back to see the rheumatologist in about 6 weeks. I am a bit cheesed off with this as I was hoping he would give me a definite diagnosis and offer me a treatment plan. I know within the next week or so I will have another episode where I will be in severe pain.

Sorry for the moan I feel a bit better now

queenfan

Hi I know how you feel I feel like you at the moment what with one thing & another I went to see a GP again yesterday in tears,
She has sent me for more blood tests she now thinks I have polymialgia on top of every thing else but wont give me any medication until she gets the results back from my kidney scan, so all that I am using at the moment are patches for my pain,
please don't feel down there are such lovely people on here who can give you lots of advise & support i wish I could be of more help to you
take care sue

woodbon

Hello, Its horrible when you see the rheummy and they can't give you a diagnosis but it can be difficult to diagnose RA in the early stages. I'm sure the rheummy would'nt have ordered tests and x-rays if he thought you had no problems. I have OA, not RA, so its not the same for me, but, I know that sometimes people get arthritis after an illness or virus, and that is still an illness. Waiting to find out the result of tests is one of the hardest things, I think. Maybe it would help you to have a talk with your GP. Hope you soon get sorted out! Love Sue

skezier

Hi,

I think it is often very hard to get a diagnosis if it doesn't come up in bloods.......... Hang in there and they will get there. For me it has taken years and years to find there is more than oa going on and now after 15+ years they tell me I have pa as well. I am sure they will get there with you, sometimes the more you tell them the better they are at getting to the diagnosis but I was lucky mine was having a flare when I saw my Rumo in April and it still was when I saw him last month so that helped.

I hope they will have a better idea what is going on with you soon. Take care, Cris

carol71

Hopefully the x-rays will give you answers. Unfortunately they take 2 wks for the results to come through.
Sorry you are in pain. Keep posting here with people who know what your going through.

Carol xxx

topgirl

Hi......
I know just how you feel.....20% of RA is called seronegative..basically this means that a blood test they do for RA comes back negative...so then the rumy looks at other things to try and get a diagnosis and this can take much longer....
When my started a thought i'd broke my toe!...few weeks later thought i'd torn cartlidge in my knee...It was only when they did an op to mend it( which in the end it wasnt :shock: )the consultant did a biopsy of fluid and tissue..and hey ho RA...Massive shock...
I then got sent to Rumy..like you at my first appointment i was fairly well but he told me to start taking Sulfasalazine because it should stop it progressing as much....
So please dont think you are going mad!...and keep insisting treatment if you feel the need.....
Good luck
Kay x

babette

Did the Rheumy not tell you what was on the x-rays? Mine let me know immediately as they were downloaded to her pc. You have to be a pain in the neck to get anywhere. My GP kept telling me back pain was due to IBS ( I have that too for my sins!) until I told him I was fed up and demanded a battery of blood and other tests. They all helpfully (ha ha) came back negative or fine. So as a last resort he sent me for x- ray and guess what I had OA. I nearly cried with relief as I was beginning to think I was a hypochondriac and so was GP. Just remember you are the one who keeps them in a job and helps pay their wages so be prepared to be bolshy and refuse to move till something is done...don't be fobbed off by lame excuses. Rheumy said I had saved a lot of time for myself and her by doing all the initial legwork.

Babette

eckstardeluxe

Hello, I don't have RA, I have OA but I remember being where you are now.

I had a Consultant tell me there was "nothing on the MRI" in October. When I eventually got my appointment with the Ortho Consultant he told me I had end stage OA spine, sacral area, Spinal Stenosis, 3 slipped discs and possible cauda equina syndrome!!!!

So much for nothing. That time was horrible, they had me convinced it was in my mind and I was making myself worse by being depressed. I knew I was in this pain but felt so awful not knowing what was wrong and them telling me nothing, like I'd never find out.

Don't wait if you have an episode, if it happens phone the Dr, keep at them, people who sit and wait get nothing, it's the ones who constantly complain (who usually aren't that bad) who get everything. I decided to keep going back everytime something happened until eventually they took proper action.

I know it's hard, you feel you are being a burden and they don't believe you, but you know your body better than anyone else, so listen to what it is telling you and fight for what you need.

Good luck, let us know how you are doing if it's ok, posting does help, just to hear other people say they feel the same. I am in a good place just now and I can honestly say the biggest part of that was finding this forum.

take care

Eck

page35

He says he does not think that I have RA as the large joint are not usually affected but may have either an infection or virus!

hi i was diagnosed with early RA a few months ago, i had simptoms for about a year before that.
i had or have pain in large joints from the begining, feet, knees, hips, hands, wrists, shoulders, neck and jaw.
looks worse writen down, i dont have all the pain at the same time thank goodness, and the pain is alot better since i have been on all the meds.
i hope you get sorted soon
good luck
page

hellywelly1

Hi

Thanks for all of your comments. I feel a lot better about things today. I will be getting the other blood tests done early next week but I am not due to see the consultant again until late september.But at least I will be able to get the results from my GP.
I think I was expecting to see consultant yesterday, he would give me a definitive diagnosis give me a treatment plan and send me on my way.

lesleygraham

Hi folks
I too have sero negative inflamatory arthritis, which is in short, RA without the rheumatoid factor in the blood. A rhummy once told me the major difference being, it essentially attacks the larger joints, knees, ankles, shoulders, elbows, wrists, etc.
Don't be fobbed off or like many on here you will have a fight to get someone to listen to you, whatever your diagnosis.
Take care
Les

joyful164

queenfan wrote:

Hi I know how you feel I feel like you at the moment what with one thing & another I went to see a GP again yesterday in tears,
She has sent me for more blood tests she now thinks I have polymialgia on top of every thing else but wont give me any medication until she gets the results back from my kidney scan, so all that I am using at the moment are patches for my pain,
please don't feel down there are such lovely people on here who can give you lots of advise & support i wish I could be of more help to you
take care sue

Hi Queenfan
You must be feeling extremely fed up. When I had the extreme pain, a good while after starting on MTX etc, I woke up one morning and the pain was extreme and it was different. Saw a new GP at the surgery as an emergency and she said that she thought it was Polymyalgeria Rheumatica and put me on 15mg a day steroids for 2 or 3 days. She said that if it was PMR, then I would get some relief within 48 hrs. She contacted my Consultant who saw me within another week.
I will be interested to hear from you if they can detect PMR through a blood test.

My own GP has PMR and I think it is always there in your system and you will find that your muscle are very weak at times.

joyful