Still no official diagnosis

Bones, joints and muscles
1

Im still trying to get an official diagnosis for whatever is going on with me.

May this year I stated getting pains in my right hand, thought it was just the workload of Uni cos it was end of year exams. By July/August it had started in my left hand and left ankle. At this point I went to my gp, who wasn't too concerned but ordered blood tests and a hand X-ray. All tests came back clear, no rheumatoid factor or anything and clear X-ray.

At this appointment to collect results I saw a different gp, who couldn't have cared less that I was still in pain despite the clear tests, my vitamin D was 51 (which is still a normal level?) so he advised 1000 units of vitamin D a day but didn't actually say that my vitamin D levels could be causing the pain.

Unhappy with still not receiving any answers I made an appointment after a few weeks of the vit D with my usual GP. At this point my right ankle had joined the party and my L index finger is getting stuck in a weird position (from google I think it's boutonniere deformity).  I was told to continue the vit D for 3 months (even though she said it was an acceptable level and didn't sound like the kind of pain you'd get with a vit D deficiency) and if there was no improvement to go back and see her and she'd look at referral to a rheumatologist, I don't think she knows anything about RA and the fact it can be seronegative as she said she doubts it's that, that I'm 'a mystery' I felt like I knew more than her which is never good. 

Anyway, since then (November) I've been getting pain in my spine, upper and lower, my shoulders and my elbow. My spine hurts even to touch it, but I've read that RA usually only affects the neck? 

Kinda worried my GP won't actually refer me but I'm in a lot of pain everyday now, it's hard to even get out of bed most mornings and my grades are starting to slip.

Anyone else had trouble getting referred or experience with RA back pain? 

Sorry this is so long! 

Thanks!

2

Hi Ker.

I think you need to press for referral to a specialist. I cannot speculate on what is wrong with you.

My own experience with the onset of RA involved widespread joint pain which mainly spared my spine, but I did have shoulder/neck pain when things were at their height. My first interim treatment was with prednisolone, which gave rapid relief, but it has its own negative consequences so it is not something you can stay on. 

The main thing is, your doctor should pass you on to someone better equipped to diagnose and treat you, so that they are not leaving you in pain or potentially causing you harm. 

You have to be your own advocate.

Good luck.

Blair

3

Mine also started in my pointer finger or first finger, swollen knuckle joint.

​Some questions please, - do you suffer from psoriasis, I have a very low level and less angry form, almost looks like dandruff in my hair line, and my skin does not like any kind of bleach or strongly scented cleaning products.

​for your GP - he should be able to do a ESR and CRP blood test, for you to have RA or even sero negative, both of these blood levels would have to be higher than normal range, but remember an infection can make them high as well, so its a little bit of a guessing game.

​Can I get you to try something that has worked for me, only taken me many years to figure it out.

​CUT OUT all wheat, check everything, eat rice instead, just for a few days, say a week to see what happens, you will not starve for a week, eat more fruit and veges instead, and try those polystyrene rice biscuits, UGHHHH, but they do as a snack.

I have been able to get my ESR down to 41 from years in the 70's and 80's, even with medication, and CRP which is usually in the 20's and 30's is 8, wow, even my rheumo was amazed at the difference, and silly me I wasn't even brave enough to tell her that the only difference I have made is cutting all wheat, at 50 years old why did I become suddenly allergic or sensitive to wheat, have they changed the breed of wheat in the last 15 years,  wouldn't be surprised at all that there has been a change, I have even been able to cut out my very strong meds, have reduced the amount I am swallowing, with the intention of stopping if I can completely.

​I had already discussed with rheumo the possibility of food intolerance, she dismissed as nothing to do with it.

 

4

I suspect that your index finger problem is probably something called trigger finger. Google that and see if it fits with your problem.

I and being treated for rheumatoid arthritis even though I am not positively diagnosed with it. The RA blood test came back negative and so my rheumatologist did an MRI of my right hand which is the one that hurts the most. The MRI showed inflamed tissue and with that and my ESR and CRP being elevated makes it look like rheumatoid arthritis. Not only that but I also have osteoarthritis in many of my joints including my lower back and my neck.

Since you're in school I'm guessing you are probably pretty young. And it would be very unusual for you to have OA but you certainly could have RA. Hopefully your doctor will refer you to the rheumatologist and that rheumatologist will do an MRI of your hand. An MRI shows more than a x-ray will.

5

Hi I think its quite unusual to have backache but whatsoever is de reason u should try anti inflammatory meds like plaquenil 200 mg 2 tabs divided into two doses and prednsolon 5 mg one tab a day. And continue vit D or folic acid 5 mg tab once a day. Hopefully u will feel better. But in case you notice some adverse effect or no improvement see a rheumatologist. Wish u a speedy recovery. I am not a doctor but I am using those meds for the last 2 yrs and feeling much better. So this is my personal advice and dont take it as an ra prescription.

6

Hi Ker, I can understand your concerns. I’m assuming you’re fairly young being at uni? Are you getting any swelling, redness, hot joints? Are all your blood tests negative? I’m thinking about your inflammatory markers? I often would find any physical signs like swelling would be gone when I saw the doctor so took photos. I would have thought a Rheumy referral would be useful even if it turned out to be something else. Ruling something out can be just as helpful and delayed diagnosis can have negative consequences. Can I suggest you go back to your GP and take someone with you who can reinforce your symptoms? Sometimes you just have to be persistent and it can be easier to speak out for someone else. I’m not doubting your capability at all but what if they’re missing something? You might find it useful to look up the NSF guidelines for RA before you go if you haven’t already. ( I think they’re CG 79. )  Best wishes and good luck. Carol 

7

Hi Ker

I’m in a similar position to you, but there are lots of other auto immune diseases that have the same symptoms. RA is said to present with symmetrical symptoms, there are other types of arthritis and also Lupus which behave similarly, might be worth seeing if you identify with them, i first thought I may have RA but am now thinking my symptoms (new and old) are more in keeping with Lupus, I’m currently seronegative too..good luck.

8

Thanks to everyone for the replies! 

Blair- I'll definitely push for referral, might bring my mum for back up 

Lyn- I've had eczema since I was young, and later into my teens ever since a hair dye reaction I've had scalp eczema, it often looks and feels more like psoriasis but my GP keeps brushing it off as eczema. I have sensitive skin so never use any fragranced products either.

I had full blood works, CRP and ESR all normal, but not sure how high in the normal range, my vit D showed as normal at 51 but 50 would have been flagged as low. GP did mention it was strange that my ANA came back clear as I have vitiligo, which apparently should have shown up.

Amkoffee - GP assessed my index finger and said it wasn't trigger finger, that maybe the tendon was thickening, but didn't have much more info. I'm 22, I feel 90 though, I've heard MRI is more effective at diagnosing joint issues/inflammation, hopefully I'll get referred for one, are you diagnosed with seronegative? 

Carol- there was no swelling or hot, red joints in the beginning but the last month or so my little finger is swollen most of the time, that's about it so far though. All of my blood tests were negative for any inflammatory markers, just vit D showed as low in the normal range, I've been taking a supplement for 3 months now and no improvement. Photos is a good idea, it's so annoying when on the one day you need to show the GP, its not swollen. Oh I'll check that out! Thanks!

Laura - at the min all of my joint pain is symetrical, I thought lupus too for a while but I have no rash so I wasn't sure it fitted 

Best wishes 

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I really don't know if Ive notever been tested for seronegative. I don't even know what that is. I do know that when she tested me for rheumatoid arthritis it was negative but some of my symptoms and my MRI indicated an inflammatory arthritis. therefore she is treating me as if I had rheumatoid arthritis. The problem is I have another diagnosis that causes similar symptoms so it is difficult for me to separate the two.

10

I’m not sure how old you are you didn’t say but if I want to see a specialist I call that dr tell them what’s going on they tell me call my primary dr to send a referral don’t wait for them to do it because a lot of dr don’t like to do it because it makes them look like quacks ....so you must do it my I have had the same things happen and mine is rheumatoid Arthoritis or it could be lupus don’t wait or it could be many thing ...find a dr call them tell them you need to make an appt like I said then call your dr tell them to send a referral to that dr don’t ask them to do I TELL THEM TO DO IT...I had problems with my stomach for yrs my dr couldn’t find anything wrong so I did my homework found the best dr called them had to have a referral my dr did the referral and I had a paraesophageal hernia which my intire stomach slipped into my chest I suffered for yrs because my dr is a idiot so I had my surgery in feb 

11

Look up the symptoms of lupus 

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Just wondering, where are you from? Carol

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North Carolina 

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Hi, I only asked because I suspect your approach may not work here in the UK unless if maybe going private? Carol

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I was just wondering if you got any answers. I have been having finger swelling too. My blood results were also negative.