Officially one year since symptoms began... - NRAS

NRAS

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Officially one year since symptoms began...

JamesPlagued
JamesPlagued

and no diagnosis yet. I've seen a handful of doctors (including a dermatologist), and nothing. My primary says it looks more like an inflammatory arthritis, my rheumy continues to rule out RA and PsA (even though the Derm. thinks PSA isn't out of the question) because of "lack of clinical evidence", and my symptoms continue to change and make no damn sense.

What I mean is that, while I do get some symptoms of RA (red joints, some burning in said joints, pain, etc), the pain is deep and more of an ache like Osteoarthritis would provide, the burning/tingling is sometimes in BETWEEN the large and middle knuckles (Aka the length of finger), and I've acquired osteoarthritis in my knees. I've still shown no visible swelling in my hands, and rest helps my pain rather than increases it. I've been feeling really well until a few weeks ago when my symptoms manifested again and a little differently. I went under a pretty heavy period of stress because of a work situation, so that's likely what caused it.

This post is basically just to vent my frustrations with this entire situation. I'm still hopeful that it ISN'T Ra...but who knows anymore. I have one more appointment with my Rheumy in December, and if nothing happens with that than I'm going to look somewhere else.

Welp, back to vitamins and eating a health diet to control the pain a little more (it was working!)

22 Replies

Keep plugging at them don't let them fob you off James. I am so sorry you can't get a proper diagnosis yet,but with ra it does take time i am afraid. Hugs xxxxxx

JamesPlagued
JamesPlagued in reply to sylvi

Thank you Sylvi, it's appreciated!

It took me a couple of years before I finally got diagnosed with sero negative RA. in fact my rheumy says that this may eventually morph in to something else but they are treating me for that until such time as what ever I have actually shows up properly. He has also thought perhaps rhupus a crossover of lupus and RA. Who knows. But I suppose my message is don't give up, we are here for support and we are happy to listen. I felt very down and wanted to give up a few times and everyone here was so supportive.

Thank you! The positivity helps boat loads.

I understand the sheer frustration of knowing there is something very very wrong but not being able to get to the bottom of it while continuously feeling like you are just going downhill. Have faith that you will eventually get an answer of sorts, like me, it may not be a final one, but it will put you on a road to feeling some relief.

I have just been diagnosed with seronegative RA, after 4 years of pain and problems. In my case, and it sounds like yours too, diagnosis was complicated because I also obviously have OA - I already have the classic knobbly fingers (starting in my 40s) and I had a hip replacement last year (at 48). But like you I had deeper, achier, warmer pain, including between my joints, and especially in my hands, wrists, feet and ankles. And a whole load of other symptoms too that I won't go into here...

I have had to be quite assertive and persistent, because doctors have tended to see negative blood tests and no significant visible swelling, and dismiss the possibility of inflammatory arthritis. But in the end, hand X-rays showed small erosions and an ultrasound scan showed synovitis, so that led to the RA diagnosis.

Personally, I still suspect PsA, and am sure I have significant enthesopathy for a couple of years, which is characteristic. You might find this interesting (the website is put together by Leeds university/NHS trust research rheumatologists): enthesis.info

JamesPlagued
JamesPlagued in reply to flow4

Thank you so much for your advice and for sharing your story.

flow4
flow4 in reply to JamesPlagued

You're welcome :)

Hidden
Hidden

I'm other way round to Flow and was diagnosed 4 years ago this month with RA. However mine has changed and moved out of joints into nerves, tendons, circulation and is now perhaps affecting my renal and cardiovascular systems. I have failed to tolerate four disease modifying drugs so am now left high and dry on a shadowlands shelf of not sure what! I do have confirmed autoimmune disease and hypothyroidism but the rest no one seems to want to commit to yet so the RA diagnosis still stands although no sign of joint involvement these days so no further medications offered.

These things are so complex and mysterious for some of us I guess it's just a question of continually flagging ourselves up to doctors, researching the immune system within reason and hoping it either goes away or proves to be benign. Not that OA is benign but you know what I mean I'm sure. Twitchy

JamesPlagued
JamesPlagued in reply to Hidden

Thank you for sharing your story! RA is such a terrible disease.

I feel for you, I do wish everyone had a clear cut diagnosis & started on appropriate treatment at the earliest signs but it can be tricky to diagnose in some. If you have no clear diagnosis or treatment plan at your next appointment I would certainly be all for seeking out another Rheumy, for your mental health too. You've had imaging I suppose, did nothing specific show up?

Remember not to put OA on the back burner & include OA friendly food in your diet. You need to hit a happy balance between protecting your joints as well as knowing what sets off inflammation. Please ensure you're not masking inflammation in blood tests & examinations with the supplements you're taking , do make your Rheumy aware of what you're taking if you haven't already. I'm all for self help as long as your Rheumy's ok'd them. If you haven't before it might be worth stopping all your vitamins or any over the counter meds you're taking in the run up to your appointments to give a treatment free picture of how things are with you.

Do keep updating us James & I hope for a good appointment for you.

I've had my hands, and knees both checked out. My hands didn't have any "significant" or unnatural deterioration, while my knees did show OA.

I just received cortizone injections for my knees, but prior to that I had been handling it pretty well with stretches and general excersize twice a day.

Another issue I had with my doctor is her lack of testing...only called for hand/knee/feet xrays and was going off of blood work I had done way earlier.

I'll do what you suggested for the vitamins though, thank you!

Seems odd her relying on previous bloods, moreover I don't understand how she can continue to rule out or confirm anything without up to date or recent bloods. I used to see my Consultant every 3 months & he always requested bloods 7-10 days prior to my appointment. My current one uses my most recent monthly drug monitoring bloods (MTX) & whilst I think too much score is held by them they are necessary. Previously mine have been part of but not solely an indication of the greater picture, rather imaging plus full examination (I'm seropositive & have OA too, both diagnosed at the same time). As it's been some while since you had x rays done do request another set is taken, with no treatment how does she know whether there's been more degeneration or not since the last set were taken? Better to confirm one way or the other rather than assume no damage has occurred.

I'm pleased you've had a steroid injection in your knees & I hope that gives you relief for a good while.

That's what I was thinking too, honestly! She's a good person and very friendly, but I'm afraid her passivity is going to be a negative going forward. I'm demanding blood work and X-Rays in December, and going from there.

I know I need to ask about C-reactive, and RF values...anything else I should inquire about?

Hidden
Hidden in reply to JamesPlagued

Ask for a full blood count James, to include renal function, electrolytes, liver, inflammation markers including CRP, ESR and PVC and haemaglobin, white and red blood cell counts. If possible get these printed off for your own record and get to know them personally! Twitchy x

It sounds like something I went Thru. I was diagnosed with PSA. They thought I had Lupus/RA and every other disease.

Find out who is the best Rheumotoligist in your neighbor and they will run a blood panel that doctors won't do because it's expensive. Good luck and don't give up you will fight this.

Thank you Vivian! They were actually leaning towards PsA , but I tested negative for psoriasis...so she ruled it out...but my dermatologist isn't so sure.

have you taken photos of your joints when they are red and swollen? I ask because my blood tests tend not to reflect the inflammation that I get and I felt disbelieved until i showed the photos.

I do have them, but I keep forgetting to show her *shakes head*. The nerves get to me and I just vomit words.

flow4
flow4 in reply to JamesPlagued

Ha! That happens to me too!

I find it helps to write a crib list on the run up to my appointments James, just bullet points of the things I want to discuss. Also, is there anyone close who could accompany you to your next appointment? I find it particularly helpful that my h comes with me for support more than anything but it's particularly helpful if it's not my Rheumy I see, if its someone who doesn't know my past history. I find delving back difficult sometimes if I'm being rushed.

Hope you're ok today? x

I will have to do something along those lines, definitely. No one to come with however, but I think if I can set an alarm in my phone for the time i'll be there, i should be alright lol.

I'm doing alright today. My girlfriend and I had to clean a bunch (moving in the spring hopefully), so i'm feeling stiff and sore in weird spots (sides of fingers) and something is up with my right thumb to the point that anything cold touching it causes sharp , sharp pain. It's odd , but i'm just trying to push on. Thank you :)

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