I don't get it : I saw my doc today and all the new... - NRAS

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I don't get it

Lilynette profile image
11 Replies

I saw my doc today and all the new symptoms i explained to her was not heard i feel like. I asked to be refered to a rheumy but they continue to tell me it's not necessary bc they say theres no way i have RA or OA bc of one blood test ruling out RA. I understand my symptoms could be other things but how can rule out something so fast. I know my insurance is also a problem so i bet that makes finding one impossible.she did order an EMG for me i hope that gives some answers. My symptoms are a bone spur on my sternum and left hand middle knuckle on the right side with tendons that slide off and make it very difficult to use my hand. Cracks that cause pain weakness tightness grinding sensations that are uncomfortable pain with come and go in joints of fingers and wrist, the sensation is also in my knees ankles toes wrist. But when i explained this to her she kind of smiled at me like i was making it up, then she ordered me cymbalta some major depression thing which makes no sense but gave me diclofenac sodium tropical 1 cream. Will the EMG help? I also have other symptoms theres just so much I'm only 18 and can't even do my normal activities anymore like okay guitar, my left pinky locks when i move it and my right hand middle knuckle snaps every time i open my hand like a tendon shealth i dunno i always thought i had OA and I'm scared my joints could get so damaged it'll be too late to be able to play music anymore. I'm scared to even get a job

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Lilynette
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11 Replies
helixhelix profile image
helixhelix

It sounds like your doctor may not be very good at explaining things, but is being thorough and checking other possibilities.

A diagnosis of RA or OA is made by a combination of blood tests, physical exam, and reported symptoms. What you've described doesn't sound like classic symptoms for RA, so it seems that the doctor isn't seeing it either and the blood test result hasn't given any reason to reconsider. Did you decide for yourself that this is what you have?

Doctors can get it wrong of course, but we also have to give them some credit for years of training and hands on experience. Which should mean that their diagnostic ability is generally better than Dr Google's.

An EMG can be a very useful diagnostic tool for other physical problems, so it's good that one has been ordered. And anxiety and stress can also exacerbate problems like trigger finger, so good that the doctor is trying to help you with this too.

You haven't been dismissed as having nothing wrong with you, so the doctor is taking what you say as being real. Which is a reasonable outcome, even if not what you expected.

Lilynette profile image
Lilynette in reply tohelixhelix

Thank you for the reply. Maybe, my doctors just have a plan but just aren't communicating with me well on what it is. No, i always thought maybe i have OA when the bone spurs occurred not RA. And i only wish i could work but I'm scared that if maybe i do have a disease thr injury to my left hand may get worse, same feeling i have with playing guitar bc when i do for even 3 min the feeling is unbearable in my left hand to where it feels difficult to make a fist bc when the tendons slide of the pain is just terrible

8sandylou profile image
8sandylou

I am the opposite & have been diagnosed with RA & OA from routine blood tests for another disability and was fairly shocked. Cymbalta isn't always just for mental illness. I am on it also (60mg-120mg/day) and it is to help my neuro transmitters to talk better to each other in the presence of long term nerve and mechanical pain. Please don't wish RA on yourself as it is a serious auto immune disjunction disease and I hope you never get it. Finromyalgia might explain your pain??? I had it while on Methotrexate for my RA and it is way worse than the pain of RA. all the best .

Lilynette profile image
Lilynette in reply to8sandylou

Thank you for the reply about cymbalta, it just seems maybe they have a plan without talking to me about it so i think maybe they just ignore me. So, thank you.

oldtimer profile image
oldtimer

I don't think that the doctor is "ruling it out" but it does sound from the symptoms and signs that you have given on here that Rheumatoid Arthritis is unlikely. You and the doctor should be looking for a more likely diagnosis with continuing investigations as necessary. The medication suggested is to give you some relief at present.

Like all of us on here, leading as normal a life as possible is the aim. Don't be afraid to do things - that way leads to much more illness, disability and impairment. We are all fearful of the future - but it's the only one we have so we have to get on and do things.

I hope this doesn't come across as unfeeling - we do know how uncertain life can seem when things aren't feeling right in our bodies.

Artroc56 profile image
Artroc56

There are forms of arthritis that don't show up in blood tests eg psoriatic arthritis

Mandalou profile image
Mandalou in reply toArtroc56

Equally different joints are more commonly affected than others within the plethora of inflammatory autoimmune diseases.

For example PSA affects the hip much more commonly than RA can.

While appearing very atypical of RA or PSA, poor Lilynettes symptoms sound dreadfully uncomfortable and worrying.

I hope you get a definitive diagnosis soon so you can get appropriate treatment.

Mx

marie66 profile image
marie66

Hi, my GP wasn't looking for RA is my bloods didn't show any factor but after months of pain and swelling in my wrists, a visit to orthopaedic surgeon ruled out the suspected Carpal Tunnel.

5 minutes with rheumatologist and finally a diagnosis 'no doubt it's RA'.

Not the diagnosis I wanted - like most I'd have preferred a quick fix! Keep strong they'll find it in the end! ((hugs)) M x

Lesley_ann profile image
Lesley_ann

Hi lilynette,

I'm on HU because I have RA, fibromyalgia and pulmonary fibrosis.

I'm actually responding to your post though because I have a 16 year old daughter who struggles with similar problem's as you have mentioned. She was diagnosed early this year with severe hypermobility by a rheumatologist. Her joint pain is actually caused by her tendons and ligaments having to much elasticity.

I'm not saying that's wrong with you but it's another problem that's easy to diagnose or eliminate.

Take care and all the best linda

pinksugarmouse profile image
pinksugarmouse

The grinding feeling in your hands and fingers sounds like an RA symptom but the other symptoms less so. But whether its arthritis or not you know when you are in pain and when something doesn't feel right so I am not surprised you feel upset about not being believed. Have you noticed any swelling? Do your joints feel 'warm to touch'? Hopefully you will find out more from the EMG but best of luck x

Make sure to get to a rheumatologist....and if that one doesn't HEAR YOU, find another one.

That is MY story. GP and first rheumy just wouldn't listen. Literally said I was just overweight...even after ACCIDENTALLY losing 100 lbs in less than a year. I directly asked my GP if it could be lupus because of the rash on my face and he said no without even running a test.

Found an Internist who HEARD me, tested me and did t like what he saw. He sent me to new Rheumy (quite a drive away) who has found RA Lupus Fibro Raynaud's & Mixed Connective Tissue Disease (as of this post). Funny...all that caused by me being overweight, right? 🙄 Internist is now my PCP and being a 2nd set of eyes on all my meds. (He is awesome!) My new Rheumy communicates all the time via email and phone. (She is awesome also!)

FINALLY a team who believes me. It's a great relief!

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