Anyone else without a diagnosis?

glitter

I'm new here

I'm wondering if there's anyone out there in the same boat as me. I've had problems with my joints since I was 8 years old. I was diagnosed with synovitis in my ankles and wrist and treated with cortisone injections.

I went from aged 12-20 without any major joint symptoms, but a lot of fatigue and I was also diagnosed with Celiac Disease.

Just before my 21st birthday I noticed my fingers and knees started to swell. I tried to get on with things and not think about it. I brought it up with my GP and she said she could feel a bit of swelling and ordered blood tests, all which were negative which she was surprised about and referred me to a rheumatologist

To cut a long story short, my blood tests are negative for everything but I apparently have a lot of symptoms suggestive of some sort of inflammatory arthritis (joint heat/spongeyness/stiffness/pain, mouth and nose ulcers, dry eyes and mouth, Raynaud's, rashes that they say are common in autoimmune diseases, Psoriatic nails etc).

But because my blood tests don't show anything at all, they won't give me a diagnosis. But they're treating me with Plaquenil and Tenoxicam and Prednisone during a flare up and I'm doing a lot better.

Is there anyone else out there without a solid diagnosis but being treated? I find it really difficult to explain to people what's wrong when I don't have a diagnosis

Thank you.

dreamdaisy

Hello and welcome to the forum, it's lovely to meet you. I went for a good while without a confirmed diagnosis apart from 'inflamatory arthritis' but once a more specific label had been attached, well, it changed nothing drugs-wise. Some of the many and varied arthritic conditions are very tricky to accurately pin-point, but from what you have said it is obvious that something akin to inflammatory arthritis is happening to you. A positive rheumatoid factor is not the be-all-and-end-all and it would appear that they are giving you meds which I hope are helping, so keep up with those, keep in touch with rheumatology and if anyone asks you what's wrong say 'I have IA which means inflammatory arthritis.' That's close enough to the truth I reckon. I wish you well. DD

barking1

Hi glitter
dont have an ansew for you but just thought i would say hello, i have waited a long time for results so know sort of how you feel i have rhumie appointment on monday and apparently my doctor has said i have an aggressive inflamitory arthritis and she will let me know at appointment which one , but iv spent several years traipsing up and down to the doctors with chronic back pain and a bad hand i was told i had a bit of sciatica , :roll: could of cryed at the time and probably did you just have to keep at it and hopefully in the end you will get your ansew xx Jane

stickywicket

Hi glitter. Welcome from me too. Mine's RA but, as you'll see, you are not alone. Many people take a long time to be diagnosed and others just have to stick with Inflammatory Arthritis.

valval

i to am inflammatory arthritis on naproxen hydro and sulfa now with pain meds nails much better joints still swell but so long as they get it under control will wait for a name for the beast that attacks me val

glitter

Thank you so much everyone, I appreciate all of your responses. It's been really difficult without a diagnosis, I begin to question whether I'm actually sick at all. They've thrown around a number of different possibilities, but nothing sticks.

I have an amazing GP and she never doubts anything despite my negative blood tests. She feels my joints and can feel the fluid. But my rheumatologist relies so heavily on blood tests and rarely even touches my joints.

I shouldn't complain I'm receiving treatment and getting quite a good amount of relief from it.

Thanks again everyone for making me feel so welcome.

L1985

Your story is similar to mine and I can relate to your frustrations. At my last rhuemy appointment I was told I had Behcets and was so happy....I know that sounds weird....but happy I finally had a name and could explain to people im feeling this way because of Behcets.

Anyway I was then referred to a Behcets specialist who said he wasnt confident it was behcets yet as I had no eye involvement....then in the same breath told me not everyone gets the eye involvement...confused?!? yea me too!

They are treating me as if it is Behcets and I was told to tel other health people I have possible behcets so I have come to the point where to me it is that until told different.

I sympathies with the mouth ulcers I get loads you can get mouth washes to help with them if they become a problem.

You have to be careful too in getting a name as I thought id be diagnosed with Lupus as I had alot of the lupus symptoms so was surprised when rhuemy said Behcets. Its easy to look at diseases and think yes I get that and that so I must have x y and z. I do know how hard it is when your wanting a name.

Its good that they are giving you some treatment and your getting relief from it.

take care

lulu x x x

woodbon

Hi, I have had negative blood tests, and yet symtoms of several inflamitory symptoms and with all the other replies you've got you can see that you'r not alone!

I've been told that often arthritis is diagnosed by finding out the things you've NOT got. :shock: I hope that you soon find out your diagnosis. I know people say that its only a name, but to me its knowing what treatment you will need to stop it getting worse and damping the symptoms down. Also, it matter to me when other doctors, like occy health at work, or claiming benifits, ask the problem up have, help to be able to give a fairly exact answer. Hope all goes well with your treatment, sounds as if they are fairly sure of your condition.
Love Sue