Rheumatologist appointment tomorrow and I’m scared to death

[ckelley116]

I don’t know what I’m more scared of. Answers? If my symptoms are as obviously indicative of rheumatoid arthritis as I think they are, she should be able to tell upon examination, right? Or am I more scared of no answers? What if she tells me my symptoms and test results are too vague or too mild to determine anything right now and she asks me to wait to see if they get worse? How am I going to make it another 3 or 6 or 12 months with “what if” hanging over my head? I feel so sick to my stomach right now I can’t stand it.

[joe23_martin]

I think if you are worried about having RA or do indeed become diagnosed with it. Then you should probably look into how diet can reduce the symptoms. As in a diet with low inflammatory foods, will help. So it is condition that can be controlled by yourself.

Secondly if you do indeed suspect you have it or become diagnosed. RA itself is not something I would be fretting about to much. Millions of people have it and go on to lead a fairly normal life. Only restriction being on bad days you can't be to active. However, that can be controlled with the point I made up top.

Think positive, you are not alone in this worry I am sure.

Sent from my SM-G950F using Tapatalk

[ckelley116]

Well, I guess I'm about to find out if all of that is true. Pending more comprehensive bloodwork, I was all but diagnosed with RA today. I came right to work after my appointment and it's been insanely busy so I haven't had time to process it, really. I almost don't want to go home so I don't have to face it. I've never been right before. I don't know how to handle this. It's such an unpredictable disease - many people do live normal lives, but many more people don't. Which camp will I fall into? My primary doctor said I had nothing to worry about; even though it wasn't her fault, how do I trust her again? How do I make plans for my future when I don't even know if I'll be able to get out of bed tomorrow? I'm about to be promoted to my dream job of book designer. How can I design books if my mouse hand is flaring?

I guess I am lucky in that my symptoms are very mild right now, and I have no joint damage, so it seems to be very early. I have a shot at remission if treatment starts right away. But even that's no guarantee. I have visions of myself that I don't even want to think about. I know RA isn't one of the "deadly" diseases, at least not directly, but it's so scary. This sucks. I so badly wanted to be told I needed therapy instead of anything else.

[damo123ie]

The golfer Phil Mickelson was diagnosed with Psoriatic arthritis at the end of 2010. Not quite the same condition but very similar. I'd say he is doing ok!! British Open and US Masters champion in the last 8 years and still winning on the tour at age 47 this year.

The horror cases you here about re inflammatory arthritis relate to prevalency and not incidence. The drugs available now were not available in years gone by and so those diagnosed now have a far better chance of leading normal lives.

Got to take the positives.

[melfish]

What did the doctor say about your negative RA test? You're not diagnosed yet, and you still may not be. That's the way I'm approaching my upcoming glaucoma specialist appointment ...

[ckelley116]

The golfer Phil Mickelson was diagnosed with Psoriatic arthritis at the end of 2010. Not quite the same condition but very similar. I'd say he is doing ok!! British Open and US Masters champion in the last 8 years and still winning on the tour at age 47 this year.

The horror cases you here about re inflammatory arthritis relate to prevalency and not incidence. The drugs available now were not available in years gone by and so those diagnosed now have a far better chance of leading normal lives.

Got to take the positives.

While I think Phil Mickelson probably has a bit more money at his disposal for treatments and may not be at the mercy of the US healthcare system as I am, I do see and take your point :) And I'm doing my best to take the positives. Since I'm close to a diagnosis I figured I could now Google with abandon and while there are lots of horror stories, there are also lots of inspiring ones. I'm trying to focus on those.

---------- Post added at 09:40 ---------- Previous post was at 09:35 ----------


What did the doctor say about your negative RA test? You're not diagnosed yet, and you still may not be. That's the way I'm approaching my upcoming glaucoma specialist appointment ...

She didn't mention my negative test except to say my primary care doctor didn't order enough bloodwork. Anyway, I'm sure she's used to seeing negative tests in positive patients; seronegative RA isn't uncommon and even patients who have had a positive rheumatoid factor before can turn up a negative later (and vice versa). Negative tests unfortunately don't mean no RA, which makes me wonder why they use them at all...

Good luck with your glaucoma appointment! :)

[melfish]

Thanks. I want it over, but I also want it never to come, if you know what I mean. It's not even the possible glaucoma that I'm most worried about, it's the other crap that's going on with my eyes. But ... it is what it is

I didn't know that about the sero-neg RA thing. Why do they even use it as a screening tool then?

[WiseMonkey]

I didn't know that about the sero-neg RA thing. Why do they even use it as a screening tool then?

They use it because the majority of people with RA will show up as positive. However, a minority won't, or these people may show up later with the RA pointers. Autoimmune conditions can fluctuate like this, that's why regular testing is advised.

[ckelley116]

It's very frustrating. I just want to know for sure so I can start treatment and give myself the best chance at a good prognosis. I'm not sure how long the blood test results will take (previous results took ~72 hours, but more stuff was ordered this time) and I alternate between never wanting to find out and wanting to know NOW.

[ckelley116]

After waiting for two weeks, I finally called my rheumatologist to request my blood test results. The rheumatologist's assistant called me back within the hour and told me "No RA" - all results were negative, but my CRP and sed rate were mildly elevated. Still, nothing the rheumatologist was concerned about.

So I should be jumping up and down in celebration, right? Except I'm not. Instead I'm trying really hard not to freak out. When she had my MRI results in hand and I told her about my foot, she seemed convinced I had RA and the blood tests were just to see how far along it was. I know it's not unusual for tests to be negative, especially in the early stages. I have this popping in the ball of my foot when I put pressure on it that sounds more and more like synovitis the more I read about it. Something is causing that, but she didn't order any imaging of my foot so I don't know. And why were my inflammation levels elevated? Why are there so many people out there who spent years in pain before diagnosis? I'm seriously trying so hard not to cry right now because as much as I want to believe I'm fine, I'm so afraid that I'm going to waste my window of opportunity for early treatment chasing a diagnosis. Why can I not just accept that my doctor is confident I don't have rheumatoid arthritis? I want to, but every time I feel the joint in the ball of my foot pop I *know* it's not the whole story.

I asked the assistant if my MRI results had been taken into account and she didn't know; she's going to speak with the doctor and call me back tomorrow. I just don't want this dragging on. This is literally the worst disease I could've picked to obsess over. I feel like I will never put this behind me.

[jojo0328]

Hey, im sorry you are going through this.

I truly do understand how difficult this is. I was on here a month ago fearing I had cancer because my symptoms were so awful and doctors were telling me I possibly had tumors. Last week I was diagnosed with a rare disease very similar to RA.

If you are using google, dont use it, that really freaked me out, a lot. Would it be possible for you to gef a second opinion? Not all rheumatologists are alike, and many have specialties they treat and xan recognize better than others. The first rheumatologist I went to did not even listen to my symptoms. I just had a positive ANA so he tested everything. The second one listened to everything and gave me a diagnosis on the spot. Autoimmune diseases are tricky things. I have been on this road for 6 long years. I know many other people with autoimmune disease would say the same.

I do hope you arent in a lot of pain, but if so, I'm so sorry and I hope you get better soon. Dont obsess too much, it wont do any good love.

Also, my doctor told me that the medications used to treat RA are the same used for my condition. They will first get the current flare under control, then perscribe drugs for flares. It isn't a death sentence, you will be able to live a normal productive life and your doctors will do the best they can to ensure that. There is a lot of research about RA going on currently, so that is a big positive. Try to focus on the good things. I am so incredibly happy that my disease has a name and I finally have some treatment options. Once you have a diagnosis, the only place to go from there is upwards!

[ckelley116]

Hey, im sorry you are going through this.

I truly do understand how difficult this is. I was on here a month ago fearing I had cancer because my symptoms were so awful and doctors were telling me I possibly had tumors. Last week I was diagnosed with a rare disease very similar to RA.

I'm so sorry to hear that! But glad for you that you've finally got a diagnosis. I can't begin to imagine what you're feeling, but I'd venture a guess it's better than the wondering :)

I'm not in any pain at all (insert collective groan here). I know, I know - pain is the hallmark symptom of RA. As are stiffness and swelling, neither of which I have. The absence of those symptoms was the only thing keeping me from flat-out panicking. But funny enough, the rheumatologist's office called me back this morning and now, taking my MRI into account, turns out she wants to see me again after all. This week. Meaning sooner than later. I'm going Friday morning. Rheumatoid arthritis wasn't specifically mentioned - she said "to discuss your MRI and a treatment plan" - so possibly they just want to address my carpal tunnel syndrome? She did ask if my cortisone shot helped (it didn't). I really don't know, and I'm exhausted from trying to guess. If I have it, I just want a diagnosis. I've only been at this for about 3 months, and I know that's nothing compared to some people! I will be truly lucky if I'm diagnosed right now. I'm in the very early stages (if I have it), and I agree; exciting research is being done. Some researchers are even saying a cure is on the horizon. If that's the case, I'm very fortunate to have this now as opposed to 20 years ago. But I just want to know. I want to know what I'm dealing with, and I want people to stop getting angry with me for not putting my full confidence in blood test results. My husband and sister are furious with me, but my gut is saying something is going on.

Jojo, best of luck to you! I'm so glad you were finally able to find out what's going on :)

[ckelley116]

Next appointment is tomorrow. Today I woke up and for the first time since developing this popping feeling in my foot, it was accompanied by pain. Nothing severe, nothing keeping me from walking, but definitely noticeable. Could be the boots I'm wearing, could be the fact that I keep testing it (but I've been doing both of those things all along), could be the fact that there's finally enough inflammation in there to make it hurt. Blah. I want this to be done. I want to move on.

[jojo0328]

I'm so sorry to hear that! But glad for you that you've finally got a diagnosis. I can't begin to imagine what you're feeling, but I'd venture a guess it's better than the wondering :)

I'm not in any pain at all (insert collective groan here). I know, I know - pain is the hallmark symptom of RA. As are stiffness and swelling, neither of which I have. The absence of those symptoms was the only thing keeping me from flat-out panicking. But funny enough, the rheumatologist's office called me back this morning and now, taking my MRI into account, turns out she wants to see me again after all. This week. Meaning sooner than later. I'm going Friday morning. Rheumatoid arthritis wasn't specifically mentioned - she said "to discuss your MRI and a treatment plan" - so possibly they just want to address my carpal tunnel syndrome? She did ask if my cortisone shot helped (it didn't). I really don't know, and I'm exhausted from trying to guess. If I have it, I just want a diagnosis. I've only been at this for about 3 months, and I know that's nothing compared to some people! I will be truly lucky if I'm diagnosed right now. I'm in the very early stages (if I have it), and I agree; exciting research is being done. Some researchers are even saying a cure is on the horizon. If that's the case, I'm very fortunate to have this now as opposed to 20 years ago. But I just want to know. I want to know what I'm dealing with, and I want people to stop getting angry with me for not putting my full confidence in blood test results. My husband and sister are furious with me, but my gut is saying something is going on.

Jojo, best of luck to you! I'm so glad you were finally able to find out what's going on :)

Thanks, I do hope you get some answers soon. As I said, I understand, this has been ongoing for me for 6 years, so im sure you are fearful. I dont have HA, so I cant say I understand that part of it. Im sure it makes thing a lot worse. If you have appointment tomorrow, then would be a good time to discuss all of your concerns. Good luck!