Might have the clues for diagnosis now!

It looks like I’m on my way for an official diagnosis of rheumatoid arthritis.  (though I suppose the new news doesn’t knock out Sjogren’s, which is one of the other contenders, though my rheum thinks RA is more likely)

Today I had a musculoskeletal ultrasound.  I had worried that this would be very painful, as I remember how much pressure it took to do abdominal ultrasounds.  Fortunately, musculoskeletal ultrasounds require much, much less pressure.  Unfortunately, it was still enough to be quite uncomfortable.  My hands are still crankier than normal, 4 hours later.

The ultrasound determined that I had inflammation in all of the joints they looked at, though they could only see ‘flow’ in one of them.  ‘Flow’, in a musculoskeletal ultrasound, helps to make certain that you’re looking at active inflammation rather than scar tissue.  However, as all of my swelling has happened since March, they’re willing to accept that it’s extremely unlikely that I have scarring.  As far as the exam went, there was one piece of good news for me: no bone degradation/damage anywhere.  That’s a big deal with RA, as it is known for eventually damaging and deforming bones and joints if it is left unchecked.

I’m trying to think of this as a good thing.  The proof of inflammation, which I could easily see but my rheum wasn’t as certain about, should mean more effective treatment.  I desperately need this under better control – I’ve missed an intolerable number of classes, and if I continue at this rate, at least one of my professors will fail me for absences from class.  (Yeah, as an undergrad you can get a waiver of that sort of thing, but the American Bar Association has rules that have stood up to challenge in courts about attendance, and all schools that are ABA certified have to follow those rules)  And oh, the pain…the idea of being free of this pain seems almost like a dream.  Not to mention, my fiance and I want to get an engagement ring, and my fingers have been too swollen to make sure it fits for AGES now!

Anyhow, sorry for the silence lately.  This probably-RA has been causing me a lot of pain and keeping me lying down on my side, and I haven’t figured out a good way to use my computer from that position so I haven’t been on it much.

In other news, until I see my rheum (3 weeks from now), I’m switching back to one of the meds I tried and went on from.  Salsalate upset my stomach pretty badly, but it worked really well.  That’s better than what I’m dealing with now – Mobic isn’t working well and it’s giving me badly disrupted sleep with hyper-vivid dreams.

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Ack! Ouch!

I went off my most recent rheumatological med yesterday morning.

I guess I hadn’t realized how well it was working, because man am I ever in bad shape now.  I feel like I was trampled by a herd of horses.  My hands are in loads of pain, my back is agony, my feet are tender, and my knees rebel every time I even think about going upstairs.  I’m on percocet for the pain until I can get a hold of my rheum and ask for a new med.  My fingers are up 1/2 a ring size, and my wrists are about 15% larger than normal.  It hurts where my ribs meet my spine and where they meet my breastbone.  I’m actually nauseated from the pain.

I’m annoyed.  I auctioned a lace scarf almost two months ago to support some rebuilding efforts in Haiti via Random Acts, and I haven’t been able to finish it and send it to the (very understanding) buyer.  I really feel bad as the buyer had wanted to give it to her mother for her birthday last week.  And now it’s delayed until I can get a new med, AGAIN.

I’m very glad I dropped my research class, because all of these days I’ve lost to physically not being well this summer would have added up to a very poor project.  Certainly not anything worthy of my friend’s memory.

I’m frustrated that I’m having to try another new medication for the pain and swelling.  This makes three I’ve had to be pulled off (though one of those was only intended to be a short-term fix, but it didn’t survive even the amount of time we hoped it would).  Two went down to GI side-effects, and this one went down to fatigue and generalized muscle cramps.

I’m sick of this.  Sick of being sick with whatever it is hitting my joints, sick of the meds, sick of the side effects, sick of having to stop taking things that are working.

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Test One-two-three (anything but that!)

(Why yes, that title is a Rent reference.  I ❤ the show and the movie)

I have medical testing coming up that I am not looking forward to – some because I think it will be unpleasant, some because there are no good answers.

The one I expect to be painful is an ultrasound of my hands.  I remember how firmly they press on say your abdomen for ultrasound imaging; that kind of pressure on my hands would be AGONY.  I suppose there aren’t really good answers on this test, now that  I think about it.  Either they will find inflammation that backs up the theory that I have something like rheumatoid arthritis (RA), or they’ll decide there isn’t inflammation there and we don’t know why my hands hurt nor why they look swollen.

I’m supposed to have an MRI of my brain done, because my former headache specialist worried that I might have pockets of fluid building up in my brain, due to the kind fo headaches I get on a near-daily basis now.  Again, there aren’t really any good answers – if nothing shows, then we have to keep investigating to see what is causing the headaches.  If it does show, that means brain surgery.  And oh yeah, having a MRI is no walk in the park.  This one will be with and without contrast, so they will fix my head in a specialized vice that partially blocks my vision, put me head-first into a long narrow tube I barely fit in, and then there’s all the noise and the vibration (which hurts a lot!).  As if that wasn’t bad enough, they’ll pull me about 2/3 of the way out so they can put in an IV and inject in the contrast material, then put me back in the tube.  I’m mildly claustrophobic, and both the head vice thing and taking me out and putting me back in considerably aggrivate the way I feel about it.

Then there’s a rotational CT scan of my neck and where the head meets the neck.  I have symptoms that could match up to craniocervical instability (CCI), which is vastly more likely in people who have connective tissue disorders like mine.  If I don’t have CCI, then we have a question about what is causing a lot of symptoms that include pinched nerve symptoms in both my arms.  If I do have it…whoa.  Surgery, but that surgery might take care of a slew of issues that have affected me over the last 4 years.  However, I won’t be able to get the botox injections into my neck that they think would stop my migraines because my head would already be unstable enough on my neck that they would be worried about destabilizing it more.  The test itself isn’t too onerous, at least – I turn my head all the way to one side and go through a mechanical doughnut rather quickly, then turn my head to the other side and go through it again.

I also need an MRI of my mid-back to see if the maybe-RA is attacking my spine or if the pain is coming from something else.  This is another relatively painless test, but the results are something I’m not sure I want to know.  If it is the maybe-RA, I suppose they’ll treat more aggressively.  If it isn’t…well.  We have to figure out what’s causing new back pain, how and why, because this back pain is neither normal nor tolerable for me.

I don’t really know what I want at this point.  I am tired of feeling like crap, so I would like to feel less like crap, but I don’t know what test results or medications will offer that solution.  In the meanwhile, I guess I keep on keepin’ on.  It starts to feel a bit surreal sometimes, and other times it feels like I keep going out of habit or lack of palatable alternatives.

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Up? Down?

One of the things that comes with having chronic illnesses is new medications.  Getting a new medication is this awful mixture of hope and fear.

You hope it works.  You really do, because you’re sick of the pain and other symptoms.  At the same time, you’re often getting a new medication because either an old one stopped working or because the side-effects were intolerable, and you worry that the new medication will be more of the same.

I’m starting a new medication for the maybe-it’s-RA that has been plaguing me for a while.  We discovered today that it may have moved into my spine; I’ve had pain there for a while, which a horrid nurse practitioner dismissed as being because I’m fat without even looking at it.  I mentioned it to my rheumy today because it seems to be limited to my spine itself and it doesn’t respond to stretching or exercises, only to heat (well, and it gets cranky when I sit up or stay in the same position for long).  My hands, wrists, feet, and ankles are all crying out right now, and my left knee has warned me that it is displeased with me.

So you see, on the one hand, I am desperate for something to help with this.

On the other hand, there’s a reason I stopped the other med.  It worked quite well, and the reduction of pain was astonishing.  But it had side effects I couldn’t tolerate.  I already have stomach problems, and it exascerbated them.  My stomach hurt terribly, and I was nauseated and had heartburn.  I could hardly eat, and felt quite miserable all the time.  I don’t want to go through that again – my stomach is finally behaving itself and I’d rather let it be!  But I need relief from the maybe-it’s-RA, especially as that can do permanent damage if it’s not kept in check.

So I sit here, staring at the bottle and wondering, will this work as well as the last one?  Will it have fewer side effects?  I can only hope.

I go through this every time I add a new medication, hoping it’s effective and that the side effects are tolerable.  Can you imagine doing that over and over and over?  As each new condition rears its head, as each medication loses effectiveness or develops intolerable side effects, a new medication has to be attempted.

Wish me luck.

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