21 year old- really confused about diagnosis and symptoms

muchalucha

Please help, I am confused and feel alone in this. So, I have had on-and-off knee pain since I was 18. I went to the doctor, nothing really happened. I recently visited a Rheumatologist because I have been getting itchy rashes and had a high RF. I haven't had any other real pain until recently. I just started taking Plaquenil 1 month ago and recently my hip and shoulders have started to hurt, I don't know if this is from the Plaquenil or not.

My biggest problem is my Rheumatologist can't give me a diagnosis. She said my hands have no swelling but my lab tests indicate I have what she thinks is either RA or Lupus. My pain is not usually on both my Left and Right joints at the same time, when I get a flare up it is usually in one joint. Additionally, I don't have any sun related rash or obvious swelling. I am so confused. Below are my only elevated tests:

RF : 50

lymphocites: slightly low

Gamma globulin electrophoresis: high

sedimentation rate: high

c-reactive protein: high


Has anyone's RA progressed in this same manner? Could this just be fibrmyaglia or some other AI disease? I am honestly so lost.

[Deleted User]

Welcome to Arthritis Care Forums muchalache from the moderation team

As mods we are here to help with any problems you may have on the message boards.

There are lots of lovely people here with a wide range of experiences with arthritis and the problems of living with the condition. Just join in wherever you like you will be made very welcome.

I look forward to seeing you posting on the boards.

Best wishes

Mod JK

Chazmoore

Hi when I was 25 I took a very painful swollen knee . I went to the doctor & got some bloods tests done. To cut a long story short my bloods had high inflammation results. I then had an appointment with a rheumatologist & blood results showed I had the arthritis gene. Nearly 9 years down the line I've tried various drugs & was doing really well on the injection enbrel. I have been diagnosed with anklylosis sponditis. I'll not lie times have been really hard & I have been really lucky with help from family & friends. I hope you find out what's causing your pain. When I was first told I had arthritis I was in shock & denial. I stupidly thought it was only old people got the disease. Hope you feel better soon.

Katycobz

Hey!
I am 23 and was dianosed around a year ago with rheumatoid arthritis, mine started in my right knee and after going to physio for about 2 years and it not helping, I was finally told to see a rheumatologist, they were also unsure but it then spread to my other knee and now wrists and elbows.
I believe that my blood tests don't show anything unordinary but apparently this can be normal. I have been in sulfasalazine for about 8 months, they worked quite well to begin with but now they aren't so great. My dosage has just been put up to the highest it can be and I have been on steroids for 3 weeks (which have helped but made me feel awful).

I guess what I am trying to say is that you need to keep bugging the doctors and rheumatologist until they can give you a diagnoses, be it RA or something else.
I hope this helps in someway

pingergenguin96

Hey! I started having symptoms when I was about 11, and now I am 20.

I got a diagnosis of "something autoimmune" by a rheumatologist when I was 18 (very technical I know ) but they way she explained it, was that although my bloods were fine, given my symptoms and family history there is something autoimmune going on but we just don't know what it is... I started on Hydroxychloroquine that same day, then when I was 19 we changed my diagnosis to "inflammatory arthritis" and it is now believed that I have some for of seronegative arthritis, but again we can't tell what type. I started Methotrexate in March...

The point is, that you don't necessarily have to have a name for your condition for it to be treated appropriately... I would definitely prefer to have a name for it, but I'm cool with only getting treatment provided it helps.

I really hope you get some answers, and maybe you should consider phoning your rheumatology clinic to say that you are having pains elsewhere too.

Jenni x

[Deleted User]

Hi pingergenguin96 welcome to Arthritis Care.

There are lots of interesting people here who all have experience with the multiple flavours of arthritis, so do join in

I look forward to reading your posts across the forums.
Best wishes
Mod Bryn

stickywicket

pingergenguin96 wrote:

The point is, that you don't necessarily have to have a name for your condition for it to be treated appropriately... I would definitely prefer to have a name for it, but I'm cool with only getting treatment provided it helps.

I do wish all our newbies thought on those lines, Jenni. I know people are often frightened and amazed by the diagnosis, then they become frightened of the meds too and sometimes shy away from them because they 'don't have a proper diagnosis'.

We often have to explain that the particular 'flavour' of autoimmune arthritis is of less importance than getting on DMARDS asap and that they can be wily beasts defying categorisation. I'm so glad, for your sake, that you have a really sensible, helpful take on it.