View Full Version : The disappointment of the unknown & untreatable

09-06-2012, 06:08 AM
So, as y'all probably know, I've had this slowly-getting-worse lower right abdominal pain for five or so months now. I had an ovarian cyst (smallish) on one ultrasound, so we thought that was the cause of the pain, but on a follow-up ultrasound, no cyst. So, at the behest of my doctors -- and against my gut instinct that it would be unhelpful -- I had a CT scan. I won the bet: it was normal. Perfectly, perfectly normal. (That is just how my medical tests roll.)

My primary care doctor was almost sure it was my appendix. I can pinpoint the epicenter of the pain with my finger; "you're pointing at your appendix," he said. So when we talked yesterday, and he told me the CT was normal, I asked him -- really trying hard not to get weepy, as I am prone to do over Unexplained Pain -- what else it could be, what could I do to control it that I wasn't already doing?

And he responded honestly, "I don't know." And I respect him for that. But I feel heartbroken. I have spent every day of the past year with my legs in pain -- a strange, unexplained pain that Mobic and tramadol can reduce a bit, but that never, ever goes away. But I've sort of gotten used to it, learned to cope. Now I have this worsening abdominal pain that is also somewhat lessened by the Mobic and tramadol, but it's definitely worse than the leg pain, more distressing.

And I'm fatigued, and there's the rash, and the tingling hands and feet, and the blepharitis and other eyelid problems, but seriously I don't give a crap about any of those issues compared to the pain. (Luckily, Plaquenil has really toned down the rash and the eyelid problems.)

Anyway, I'm just venting here. I'm still undiagnosed (right now it's query UCTD? hypocomplementemic urticarial vasculitis?), and doctors have called my combination of symptoms and lab and biopsy results "weird." Whatever. I don't need a name for it. But more and more pain with no explanation and no treatment? And no diffuse, vague pain. Freakish, pinpointable pain. Why, why, why. And I'm at the point where you couldn't pay me to have another medical test done. It's so frustrating.

And I freakin' hurt.

End rant.

09-06-2012, 06:53 AM
I'll see your rant Derrie and I'll raise you one. Re appendix - I have heard of "floating appendix" but I went to Google it and cannot find anything worthwhile.

Meanwhile back at the ranch, I'm still undiagnosed too except for possible UCTD. Going to a new rheum in October. Now I have these weird pains/tingling/burning in my feet and ankles - kind of like when blood starts to flow back into an extremity. The doc I work for is wondering if it's tarsel tunnel but thinks there's a circulatory component as well.

I do describe my pains as freakish as well. I don't know anyone who has them. And the rashes come and go and are never there for a medical professional to see. Bloodwork always comes back okay - not great but still within lab values. I'm starting to think I should pack it all in and call it stress.

Good luck Derrie - I know; it's frustrating as all get-out.

09-06-2012, 06:54 AM
when is your next appointment with your rhuemy?

could you ask a doctor is a short dose of steroids may help relive your pains.
some doctors use this as a test to see if it is auto immune.
(steroids help if it is...)

all i can really offer is a hug.
i understand.
(i went to doctors for over 30 years before i was diagnosed.)

09-06-2012, 07:42 AM
Manderson -- I think I can safely say I know exactly how you feel! Sucks, doesn't it? I will say that my tingling/pain in my extremities sounds similar to yours. My neurologist originally thought carpal tunnel for the tingling and pain in my hands, but we ruled that out, and my gut feeling is that it's circulatory (and honestly, my gut instinct is as about as accurate as anything else these days). I did want to give you some advice regarding your rash-- get a doctor to care about it! I had ignored my rash for years (it was the first thing I ever had show up, I've had it for like 6 years, coming and going, but didn't pay it much mind until my other symptoms started), but my neurologist saw one of the spots one day and got excited about it. He sent me straight to a dermatologist, calling her himself, and she saw me on her lunch break to take a few biopsies. The biopsies proved interesting: histopathologically, they looked just like lupus or dermatomyositis, but immunofluorescence was negative (filed by doctors under "weird"). Those biopsies were the key (along with consistently low C3 and C4) to defining my health problems as autoimmune/connective tissue and got me started on Plaquenil. So, I'd say chase that rash, if you can.

Steve -- My next appointment is in late October. I've tried steroids before, and they helped on a higher dose (about 60mg), but they also made me hypertensive and highly agitated at that dose, so we weighed the benefits, and I stopped taking them because the side effects were worse than what was being fixed. I wouldn't be opposed to another steroid trial, though. Maybe a lower dose for a longer time or something.

But thank you for the hug! I know y'all get it, which is why I rant here instead of to people in my real life who, while sympathetic, just don't totally understand how insane this stuff can be. Like, they'd all think I was crazy if they knew that I actually hope for abnormal test results, so we can get somewhere with all this!

09-06-2012, 08:11 AM
Derrie - everything going on with me started with itching and rashes. The itching and rashes always precede the joint pain. I'll get a little spot of red with the prerequisite itch and within minutes the burning in that joint starts. And it's bilateral. Which makes me think of RA and PA (I do have psoriasis on my scalp like WHOA). I did go to derm who did a scraping on a rash on my left foot. He said fungus after looking at the slide. Then he looked on my scalp and said psoriasis - did not take a scraping. There's something that's making me think the crap on my scalp is not psoriasis, so I am going to another derm. I feel like a drug seeker or a munchausen patient going from doc to doc.

09-06-2012, 08:43 AM
I feel like a drug seeker or a munchausen patient going from doc to doc.

Don't I know that feeling! I've seen half the specialists in my small town, and conversations with healthcare providers often start with, "Oh, I have heard about you!" Which is at once both heartening (they care enough to discuss me with colleagues to try and figure out what's wrong!) and horrifying (I'm considered an interesting topic of conversation?!). That said, not a single doctor has not believed me or accused me of malingering or drug-seeking -- even when I have doubted myself and suggested that maybe it's all in my head. "When you wonder to us if your symptoms are all in your head," one of my doctors said, "that usually means they're not. We believe you."

So try not to let the self-doubt stop you from seeking excellent medical care and an answer.

09-06-2012, 08:56 AM
All I want to know is "what is this?" That's all. Just give it a name and I'll quit carrying on like a House episode. It's the not knowing and then I think "am I doing more damage the longer this goes on?" I read where Steve took 30 years for a dx and I have coworker who got one immediately. I just don't know; I'm in the medical field, I get that AI diseases overlap and are difficult to diagnose right away, but that doesn't prevent me from getting frustrated. Aye yi yi!

09-06-2012, 01:02 PM
And I think that is the balance we have to find-- I've pretty much avoided doctors and tests and diagnostics for the past five or so months because I was getting exhausted by it, and there are no indications that anything life-threatening is going on. So, with my doctors, I decided it was better to just step back from it for a while. However, now with the new and increasing levels of pain, I have to ask myself, am I ready to start chasing this again? I could go to a GI doc and get a colonoscopy. I could have exploratory surgery on my abdomen. But for now, I think I'd rather have so pain than do either of those things!

09-06-2012, 04:31 PM
I'm arriving late to the party, but here's my rant. Today, my doctor decided to go the blood sugar route. I had to spend nearly a hundred dollars to buy a glucometer and test strips. It's a shot in the dark, but I'm in a "determined to get a diagnosis" phase. I swing back and forth. When all the symptoms are tolerable and I'm having no seizures, I just thank my lucky stars and live with the pain and exhaustion. That's when I feel like Derry -- couldn't pay me enough to go to one more doctor, have one more test, and try one more expensive medicine on a shot some wacky theory might be true. But when I start having the power surge-like brain zaps that sometimes lead to a seizure, I get after it again. Try explaining to a doctor what a kinda dizzy but not really, kinda off balance but not really, kinda like a power surge type zap in the brain feels like. Impossible. And talk about being the topic of conversation...I know the employees at the small town pharmacy I go to talk about me. I'm sure they think I'm a complete wacko. Today, I don't care. I'm determined. Tomorrow, I'll be right there with 'em, questioning my own sanity. We do what we do, and because we do, we know there's still hope. Without it...well, then what would we do?

09-08-2012, 02:55 PM
I agree with what has been said here. I have that tingling in my hands and feet. My right foot is numb most of the time. My leg muscles are constantly contracted and spasming, and the docs seem baffled by it. I've been tested for disc problems, spinocerebellar ataxia, MS, and Spastic Paraplegia. Everything comes back negative. I've been to a Sjogren's Conference, and I saw others who walked and talked like me, and learned about the neurological manifestations of Sjogren's.
Still, my silly rheumy claims that SJS is "only dry eyes and dry mouth and is easily treatable" - sigh. Back in Texas, I was also told that I have scalp psoriasis. My rheumy there thought that I might have Psoriatic Arthritis. My current rheumy says "you don't have psoriasis", but doesn't even look at the scaly sores on my head. I gave up on the PCP when he called me a hypochondriac.

Derrie - I know that I've mentioned this before, but has your gyno ruled out endometriosis? Have you seen a gastro to rule out things like gall bladder issues or Chrone's disease? I've been through those weird abdominal pains with my daughters. It's no fun to get the docs to take it seriously.
I've had my appendix out. Believe me, that pain is unmistakable and unrelenting!
Good luck!

09-08-2012, 03:19 PM
Derrie - I know that I've mentioned this before, but has your gyno ruled out endometriosis? Have you seen a gastro to rule out things like gall bladder issues or Chrone's disease? I've been through those weird abdominal pains with my daughters. It's no fun to get the docs to take it seriously.

Thankfully, my doctors take me very, very seriously. They also have no idea what's causing the pain. Endometriosis was suggested, but since it's not changing with my cycle, they feel that is unlikely. I haven't seen a GI doc yet because, as my other doctors put it, "They're proceduralists, and you're guaranteed a colonoscopy." Also, I don't have any other GI symptoms like bloating, vomiting, diarrhea, etc. So I'm not quite ready to go there.

Instead, both my internist and rheumatologist seized on this pain as support for their working theory of HUVS (hypocomplementemic urticarial vasculitis syndrome), which I still don't quite buy, but a large number of HUVS patients have abdominal pain like this, apparently, that doesn't show up on scans. So after my normal CT, both doctors were insistent: "You have to let us refer you out." They encouraged me not to see a GI here, since I might be faced with repeat tests when (if?) I go to the Big City Teaching Hospital. I reaaaaally don't feel like becoming a guinea pig for a new set of doctors (and residents and interns and med students), but I probably don't have many other options.

And Marla, when do you get to go back to your good doctors? Poo on your current rheumatologist and PCP. They sound stupid.

09-08-2012, 03:42 PM
I've found the docs and residents and interns to be pretty nice at teaching hospitals. I've seen them in Houston, San Antonio and San Francisco.
My hubby will graduate next March, and we'll move back to SA in April or May. I'm not looking forward to the awful heat and humidity, but I am looking forward to my great docs there.