Spiraling - rheumatoid arthritis

[ckelley116]

We in the UK complain about how long it takes to see a specialist but when I see posts from the States it seems that your healthcare system goes the wrong way.

I have RA and I can assure you that it is not a symetrical disease.

BUT I was diagnosed by a blood test ordered by my GP before getting near a rheumatologist, and dont understand the logic of you going there without doing this first.

I would also do a search for "I dont see how this could be anything else" it is everywhere on the HA boards

My insurance doesn't require referrals so I was able to see the hand surgeon without my GP sending me there (although she did recommend it when I first started having issues last fall, which I thought then were related to carpal tunnel syndrome). The hand surgeon is the one who said I needed to see a rheumatologist when I asked if I should see my GP for a blood test.

I'm finding periodic, minor comfort in the fact that I don't have inflamed, red joints, fatigue or serious pain, but that comfort doesn't last long. This isn't my first HA rodeo and in periods of sanity I realize how ridiculous it sounds to say that it can't be anything else. I wouldn't even be here if the surgeon hadn't said "inflammatory disease" - I'd be thinking "overuse injury". Even with the involvement of my left hand, which does not get overused. Unfortunately though all of my anxiety-reducing techniques (journaling, coloring, drawing) require use of my hand, which I can't use without reminding myself that something's wrong with it, which starts the spiral all over again. It's quite the vicious cycle.

Hi

This is just a courtesy reply to let you know that your thread was merged with another of your threads

It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.

Elen

Thank you

[ckelley116]

The nerve conduction study I’ve been waiting a month for was supposed to be this morning but they cancelled on me. Woke up super early and wasted a personal day of work, and I’ll have to request another one when I get rescheduled. Haven’t heard from the rheumatologist either about scheduling that appointment. Starting to feel like this is never going to end.

[Elen]

So basically I have wasted my time telling you how I was diagnosed.

My rheumatoligist consultant still relies on my blood tests to determine how my treatment is going.

[melfish]

So basically I have wasted my time telling you how I was diagnosed.

Yes, it appears so

OP, RA is easily ruled out by a simple blood test. You don't need to see a rheumy for that. You are doing yourself no favours by convincing yourself you need specialist treatment when you've not even been diagnosed with anything.

You say you need help through this, so why not listen to Elen, who actually has the condition ...

[ckelley116]

So basically I have wasted my time telling you how I was diagnosed.

Not at all. The nerve conduction study was scheduled a month ago when my hand surgeon was operating under the assumption that all I had was carpal tunnel syndrome. When he decided it was more likely that my symptoms were being caused by an underlying inflammatory disease, he advised I keep the appointment but see the rheumatologist too. I never expected the NCS to diagnose (or clear) me with RA. But it was supposed to provide me with more information about my situation. I understand very well how RA is diagnosed. I explained in my previous reply that the rheumatologist will be the one giving me the blood tests. That’s how I was told to do it. Maybe I wasn’t very clear. The frustration of being kept waiting is not helping my anxiety. What I’m looking for right now is support while I’m waiting for answers. I thought that was what we did here.

[Elen]

Support yes but fuelling and enabling your fears no.

[melfish]

Time to give up when the hostility comes out

[ckelley116]

Time to give up when the hostility comes out

There was nothing hostile about my reply. I’m sorry if it read that way. My intent was to explain why I’m going to a rheumatologist rather than my GP, since there seemed to be some confusion over that part. I specifically asked the hand surgeon if I should see my GP for blood tests. He specifically said I should go directly to a rheumatologist, and gave me that doctor’s name. That might not be the way it’s normally done, but it’s what I was told to do. In the meantime I thought I would come here for some help in allaying (not enabling) my fears while I wait for information. I’ve done that several times on other forums in the past and have gotten some great support. That’s all I was looking for. But focusing only on the fact that I’m “doing it wrong” isn’t helpful, since I’m only doing what my doctor directed me to do.

[tryingtosurvive1]

You don't seem horribly hostile to me.
Make sure to get blood tests for inflammatory markers, a MRI, and a nerve conduction study. Sounds like all that is in the works already.
I may regret saying this on an anxiety board but your surgeon could have been thinking of relapsing-remitting MS, since you had hand numbness/stiffness that came on and went away once already with steroids. If you do have that it will show up on an MRI.

I think you will have some answers soon and you will NOT have anything that can't be treated successfully.

[ckelley116]

You don't seem horribly hostile to me.
Make sure to get blood tests for inflammatory markers, a MRI, and a nerve conduction study. Sounds like all that is in the works already.
I may regret saying this on an anxiety board but your surgeon could have been thinking of relapsing-remitting MS, since you had hand numbness/stiffness that came on and went away once already with steroids. If you do have that it will show up on an MRI.

I think you will have some answers soon and you will NOT have anything that can't be treated successfully.

Thank you - I appreciate that! Funny enough, MS isn't even on my radar. I went through that scare a few years ago (not for me, but my husband; he's fine of course). I also know a few people who have it and they're doing great. I like to think I'd be okay if it were that. Eventually. It's the thought of joint pain, medications with (seemingly) terrible side effects, eventual disability and things like that which terrify me. I am petrified at the thought of losing my independence and having to quit the jobs I adore. But you're right; nothing I can do until I get the tests. Hopefully soon.