Having trouble believing my test results

[ckelley116]

So yesterday I got the news I wanted - my blood tests came back negative for rheumatoid factor. Basically my doctor says I have no reason to believe I have rheumatoid arthritis. Awesome right? I actually had a pretty fantastic day after I found out. But then today everything I read came rushing back. These tests commonly come back negative even when the person does have the disease. Tenosynovitis can be a strong indicator of a future RA diagnosis - many people are diagnosed within 5 years. And I still have symptoms in my foot. Symptoms I didn’t mention to my doctor because I briefly convinced myself they weren’t related. If I’d told her about it would she think differently about what’s going on with me? Would she recommend I keep my rheumatologist appointment? I want so badly to believe that this is it, that I don’t need to worry anymore, but I’m having such a hard time. This has never happened - I always believe what my doctor says. Help me believe her now?

[WiseMonkey]

Hi,

RA is an autoimmune condition and usually the markers show up if you have it. I haven't read anywhere that tenosynovitis definitely precedes RA, it's just more prevalent in those with autoimmune disorders. Personally, I'd believe the results until I see or feel otherwise. There's no use worrying about things that MIGHT happen!

Have you been diagnosed with an autoimmune condition?

[jojo0328]

Let me ask you a logical question.

You go to the store, and you want to buy some crackers. The crackers are marked 3.99.

You go to the counter, pay for your crackers, and leave. At any time, did you question how the crackers were marked? How much you had to pay? Of course not, because those people do their jobs, and you just follow what they do. Those people likely did not train for 8 years to mark and sell you a box of crackers.

Obviously, your body is different than a box of crackers. However, your doctor has studied for many years, plus a specialization in their field. They are using sensitive medical equipment to test. I understand you are worried, but it is pretty likely that there is nothing to worry about.

Perhaps keep a journal of your symptoms and asked to be tested again in 6 months if you are overly concerned. Otherwise, listen to your doctors, not doctor google ;)

[ckelley116]

Hi,

RA is an autoimmune condition and usually the markers show up if you have it. I haven't read anywhere that tenosynovitis definitely precedes RA, it's just more prevalent in those with autoimmune disorders. Personally, I'd believe the results until I see or feel otherwise. There's no use worrying about things that MIGHT happen!

Have you been diagnosed with an autoimmune condition?

I have not. This all started when I developed a sudden-onset case of carpal tunnel syndrome in my right hand, brought on by tenosynovitis which was impinging the median nerve. I saw a hand surgeon, who told me I probably had an inflammatory disease and that I should see a rheumatologist. Because I'd read that tenosynovitis has been found to be a strong early indicator of RA, I panicked. The rheumatologist couldn't take me for three months so in the meantime I called my primary care doc, who said she'd want to see me before any lab work was ordered. I saw her last week, described the symptoms in my hand and wrist, and told her what the surgeon said. She seemed pretty dismissive of his comments, which was comforting, and told me that tenosynovitis was brought on by overuse (which I had already thought, prior to my appointment with the surgeon - I'm on the computer literally 60+ hours a week so it made more sense than a disease that affects 1% of the population). She ordered the necessary blood tests, plus Lyme disease and thyroid function, and everything came back normal, thankfully.

Since last night, I've been Googling (bad, I know, but I think this time it actually helped) and it turns out that what I thought was a tendon in my foot probably isn't - it doesn't even look like there is a tendon in that part of the foot. It seems pretty likely that what I'm dealing with is Morton's neuroma. Those are most common between the third and fourth toes (where I feel the "clicking") and can produce a clicking sound when palpated (like mine does). These are totally benign. Of course other conditions can mimic the symptoms, namely synovitis of the adjacent toe joints, which brings me back to RA, but I'm determined to believe my doctor and proceed like this is just something brought on by ill-fitting shoes.

---------- Post added at 10:09 ---------- Previous post was at 10:08 ----------


Let me ask you a logical question.

You go to the store, and you want to buy some crackers. The crackers are marked 3.99.

You go to the counter, pay for your crackers, and leave. At any time, did you question how the crackers were marked? How much you had to pay? Of course not, because those people do their jobs, and you just follow what they do. Those people likely did not train for 8 years to mark and sell you a box of crackers.

Obviously, your body is different than a box of crackers. However, your doctor has studied for many years, plus a specialization in their field. They are using sensitive medical equipment to test. I understand you are worried, but it is pretty likely that there is nothing to worry about.

Perhaps keep a journal of your symptoms and asked to be tested again in 6 months if you are overly concerned. Otherwise, listen to your doctors, not doctor google ;)

You're exactly right. Thank you! (And now I'm craving crackers :roflmao:)

[ckelley116]

Looking for some advice. I haven’t cancelled my rheumatologist appointment yet; I was planning to do it tomorrow. My primary care doc told me I can put the RA fear behind me and proceed with carpal tunnel syndrome treatment. But then I realized my blood test didn’t include a check for anti-CCP, which is even more important than the rheumatoid factor. I’m afraid I won’t have any peace until I get the all-clear from a specialist, but I’m also afraid that going to that appointment will just feed the beast (not to mention indicate that I don’t trust my primary doc, and she’s actually pretty wonderful). Meanwhile the mild aches in my knuckles continue to come and go. What would you do, in my position?

[Fishmanpa]

In your position having HA, I wouldn't cancel the appointment. Your dragon won't allow you to rest if you did.

Also, in your position, I would seek professional real life help so you can better cope and rationalize.

Positive thoughts

[ckelley116]

In your position having HA, I wouldn't cancel the appointment. Your dragon won't allow you to rest if you did.

Also, in your position, I would seek professional real life help so you can better cope and rationalize.

Positive thoughts

Thanks, FMP. Your advice has always been appreciated, even going back to the AZ days.

I will keep the appointment but in the meantime will try to remember that my doctor knows what to look for and I should trust her when she says I’m fine. In the meantime, I am looking for a CBT therapist who will work with my schedule and I have a CBT workbook I bought. Maybe I’ll crack that open tonight.

[ckelley116]

I did something really stupid.

The hand surgeon treating me for carpal tunnel syndrome had me get an MRI, which I did two days before Christmas. I haven’t heard from him since but I’ve been following up with my primary doctor and will be seeing a rheumatologist, so I wasn’t too concerned. If he didn’t reach out it couldn’t be too bad, right? Well yesterday I got the bill for my portion of the fee and went to the facility's website to pay it. Lo and behold, there were my results. I tried so hard but it got the best of me and I read them. Apparently my hand is riddled with tenosynovitis. I have a swollen median nerve, a perforation of either a tendon or a ligament, and in my wrist, a “small distal radioulnar joint effusion”. I’m not even positive which joint that is or what it means, except that effusion means swelling. Joint swelling is a symptom of RA. I know I'm not a specialist so all of this could mean nothing sinister and I KNEW I shouldn’t have looked at them but I couldn't stop myself. Add to the fact that my knuckles have been achy and my wrist is hurting as I type this (when I haven't had much pain at all, until the last few weeks) I feel like I’m going to throw up. I just wish I could trust my blood test 🙁 Or fast forward 3 weeks to my rheumatologist appointment.

[jojo0328]

Joint swelling is a symptom of a lot of things. Did you know that HA can cause swelling/inflammation?

Obviously in this case, there is something wrong with your hand. Tendonitis can cause swelling, a sprain can cause swelling. You say you have a perforated ligament? That is obviously going to cause swelling. Swelling is a natural thing your body does to protect itself.

There is no reason not to trust your bloodwork. It was done by professionals who studied for years. I totally understand that waiting can cause stress. I'm in the same situation. I have an appointment tomorrow for RA results among others. Worrying about it isn't going to change the outcome.

I doubt this will help but my aunt and a few friends have RA. They, as well as my doctor told me that RA is almost always a bilateral condition (occurs on both sides).

[ckelley116]

Joint swelling is a symptom of a lot of things. Did you know that HA can cause swelling/inflammation?

Obviously in this case, there is something wrong with your hand. Tendonitis can cause swelling, a sprain can cause swelling. You say you have a perforated ligament? That is obviously going to cause swelling. Swelling is a natural thing your body does to protect itself.

There is no reason not to trust your bloodwork. It was done by professionals who studied for years. I totally understand that waiting can cause stress. I'm in the same situation. I have an appointment tomorrow for RA results among others. Worrying about it isn't going to change the outcome.

I doubt this will help but my aunt and a few friends have RA. They, as well as my doctor told me that RA is almost always a bilateral condition (occurs on both sides).

I did sprain that wrist as a kid and it's been "clicky" for as long as I can remember, though painless (unless I put pressure on it, like closing a window or doing a push-up). In my rational moments - I do have them; just not many - I realize there are other things this could be and that if my primary care doctor was dismissive, I should be too. But it's so hard. My symptoms are somewhat bilateral (definitely worse in my right hand, which is where all the tenosynovitis and the CTS are, but I do have a trigger finger in my left hand and the knuckles on both are periodically achy, though it's very mild). And my primary care doctor didn't see the MRI results, since the imaging center the hand surgeon sent me to isn't part of the same health network. I can't help but wonder if her impressions would have been different if she'd seen them.

I'm so sorry you're going through this too, and I really appreciate the time you're taking to give me support in the middle of it! I hope everything works out for you. Please keep us posted!

[jojo0328]

I did sprain that wrist as a kid and it's been "clicky" for as long as I can remember, though painless (unless I put pressure on it, like closing a window or doing a push-up). In my rational moments - I do have them; just not many - I realize there are other things this could be and that if my primary care doctor was dismissive, I should be too. But it's so hard. My symptoms are somewhat bilateral (definitely worse in my right hand, which is where all the tenosynovitis and the CTS are, but I do have a trigger finger in my left hand and the knuckles on both are periodically achy, though it's very mild). And my primary care doctor didn't see the MRI results, since the imaging center the hand surgeon sent me to isn't part of the same health network. I can't help but wonder if her impressions would have been different if she'd seen them.

I'm so sorry you're going through this too, and I really appreciate the time you're taking to give me support in the middle of it! I hope everything works out for you. Please keep us posted!


I know it must be really difficult for you. I don't have HA, so I wasnt really worried about my test results at all. What my doctor told me (he isnt a rheumatologist, but i've been referred for positive ANA) was that I should try to test again in 6 months, or to test again when things are flaring up. Just because your RA test is negative doesnt mean you have or dont have RA. It only means that you arent showing any symptoms in blood now. It also may not be RA, it could be any number of other autoimmune issues. I've also heard that carpal tunnel affects people bilaterally quite often, but i'm not 100% sure on that.

Look, I totally understand what you're going through. I have had to fight (and fight hard) to get any doctors to take me seriously, and this has been ongoing for 4+ years. I came to this forum because my doctors started telling me I just had health anxiety and nothing could fix me. Actually, from my results today I have recurring calcified tendonitis that has caused multiple tears in my rotator cuff, but no doctor, until my current one, even took the time to do an ultrasound to find out. So, I really understand you. If you believe this is legitimate and not just your HA talking (I dont know how you would know the difference, but I think you just know), then maybe you can approach your doctor about retesting again when you are in more pain.

I do hope you find some answers (and I hope I do too!) Just request testing again in 6 months or when things get worse, or wait and see if what they plan to do for your Carpal Tunnel helps at all. I have tried so many things to fix my issues because doctors didnt believe me. Just try to listen to them and exhaust all the options they give you so they can't say you didnt try. Best of luck, I really hope you get it sorted!