anyone else have a long road to a dx?

[mopinko]

i'm sure some of you did. i started having trouble about 7 years ago. fatigue, swollen glands, etc. totally by accident i found out i had a positive ana. (had a kid come up with an antibody abnormality, caused by mono. but the doc thought i should be tested. hers resolved, mine did not.) had to wait 6 months to repeat that test, and when it persisted, i started seeing rheumies. went through 3. the first was just a whacked out bitch. she told me i had sjogren's syndrome, even though i had NONE of the symptoms. the second was a pompous ass at a big research hospital. he told me i had lupus, but wrote to my doctor and said i might, maybe, possibly have lupus. the third was a nice lady, but didn't think i had lupus. i had west nile virus, and that was what really ramped whatever it was up to where it was really affecting my functioning. she decided that i was still suffering from a sort of a hangover, and didn't have lupus at all.
none of the meds that i was prescribed did anything for me. several made it worse. i gave up, went back to smoking marijuana, and waited to start feeling better. i was functioning decently, and the pain was not that bad. i just adjusted to the new normal. fewer hours in the day. but still seemed like i had a life worth living.
over the last week or so, i think i finally have a definitive symptom. i have just the faintest shadow of the classic lupus rash. it is barely visible, but it is very itchy and tingley. shit.
i had waded through all this, i thought. i had accepted that i was sick, then had hope that i wasn't. now i have to go back over all that.
fuck, fuck, fuck. that's all i can say.
so, who else wishes they did not know the truth?

[RedFireDiamonds]

1. I Understand

In May, about three years ago, I started to get headaches. Not full-blown migraines or even simply bad headaches, just these annoying aches in the front of my skull that would not go away, even with medication. Got the eyes checked and all that, needed glasses but those weren't the cause of the headaches. Then I started to hurt. Shoulders, back, knees, ankles. I felt like I was 80. That was when we saw a doctor. Over that summer I was "diagnosed" with: leukemia; lupus; Lyme disease (stage 2); a brain tumor (CT scan came back normal, so they ruled that out); and rheumatoid arthritis. After the last I was sent to specialist were preceded to tell me (I was 14 at this time), that I wasn't really in pain, it was all in my head and I was just depressed and trying to get attention. Well, bet your ass I was depressed, I was 14 and there were days I couldn't get out of bed. But it was the pain causing the depression and not the depression causing the pain. Finally, my family doctor told me that I have Fibromyalgia and Chronic Fatigue. That was tough, because after reading up on it, I realized that most people weren't diagnosed with this until their 40's. The two years after that were hell, trying to find the right meds, dealing with the depression thing. It was just bad. I'm better now, though, finally rebounded. Still have the pain and all that but not as bad anymore. Sometimes I wish I didn't know, because I'm always afraid that I'm going to use my Fibro as an excuse not to do something. My mother is always afraid that she's going to overlook something serious and write it off as symptom of the Fibro. But it's nicer to know than it is to simply be sick and have no idea why.

[newyawker99]

9. Hi RedFireDiamonds!!

Welcome to DU!! :toast:

[Warpy]

2. Look at it this way

That rash will save you a fortune on blush.

Other than that and having a ready excuse to duck social events you're not too keen on attending, that's it for an up side.

It can be controlled, though, and lupies now have a normal life span.

[mopinko]

3. well, i don't wear any make-up either way.

it just sucks to have your denial taken away!!!

and so far none of the meds have done anything to help me. even the pain meds. vioxx and bextra worked pretty good, but that's out. i tend to get a lot of rebound pain, so nothing helps for long.
i was on plaqinel for a while, which did nothing. even steroids didn't help. this is one of the reasons the last rheumy thought it was not lupus. back to the doctor shuffle, i guess.
i use my excuse to make my kids get themselves up and off to school in the morning.

[Warpy]

4. My guess would be fibromyalgia

Have your rheumy check you for trigger points. It's often associated with lupus, Sjogren's syndrome, rheumatoid arthritis and several other disease processes. You could be asymptomatic with lupus but have a raging case of fibro. Make sure he checks it out. If he's one of the old school who says it's all in your head, find another doc with experience in it.

The good news is that there are treatments available, although it's a relatively new condition as yet. A good rheumy will be able to diagnose and treat it so that you can have a reasonably normal life. Just make sure he's considered it. There's got to be a reason for that kind of pain.

[mopinko]

5. just so sick of docs

got 2 kids with problems that always have me at some appointment or other. blech.

[mopinko]

6. so, what do they do for fibro?

seems like all this stuff gets the same blunderbuss treatments, anyway.

[Warpy]

7. Fibro has several components

including a large amount of pain neurotransmitter in cerebrospinal fluid, the fact that sufferers experience pain in a different part of the brain from non sufferers, and a lack of deep sleep.

Docs attack all these things with analgesics, sleep aids, muscle relaxants and an exercise regimen of slow stretching to keep people with the condition from becoming completely physically deconditioned.

Steroids and DMARDs are generally useless on fibro, although they may be used for related conditions that I mentioned above.

A good rheumatologist who has kept up with the latest developments in fibro research is the best resource.

Five years ago, nobody took it that seriously. They all dismissed it as "all in your head" and not particularly serious, since it didn't involve actual tissue or joint destruction. That's changing slowly as they discover new things about its physical findings.

[mopinko]

8. very interesting.

you could be right. one of the reasons they back off the lupus dx was a bone scan that showed absolutelty no joint problems, and pain that was not in my joints. and yes, i did get some "all in my head". i am a woman, after all.

[fed-up]

12. thank-you, thank-you thank-you for the term trigger points and fibromyalgia

I just googled the term and came up with some diagrams and lo and behold those are sensitive/painful spots.
http://www.google.com/search?client=safari&rls=en&q=fibromyalgia+trigger+points&ie=UTF-8&oe=UTF-8

I will print out the pics and take them to my doc and my physical therapist!!

So not only am I Bipolar II, with GAD and PTSD (mild) but also probable CFS (from way back in the early 1990's, with shortened, bulging, herniated, degenerating, spurring discs, wheat and dairy intolerances and chronic headaches

but now I may get to add fibromyalgia to my list

I will also stop beating myself up for never really "making something" of myself after dropping out of Berkeley in 1984 due to health issues.

And I am ever grateful for the free clinic which is where I got help filling out the forms for medical and where I got my BP diagnosis...

Having been without health insurance since 1988 has probably cost me a huge loss of income and work time, not to mention mostly unmanaged pain.

[OKthatsIT]

10. hmm...so many people with immune disorders

Just a thought...by the time a child is 5 yrs old, he's has 95 foreign antigens in the body, keeping the body on high alert, from childhood vaccines.

The AMA, FDA, EPA and drug companies have much to answer for.

Keep researching 'diet'. Absolutely, stop eating wheat, corn, and, sugar. Repairing your digestive tract is key.

[Warpy]

11. It's not the vaccines

Some very preliminary research has turned up an RNA virus vaguely similar to the HIV virus in a lot of sufferers. People with autoimmune diseases like Sjogren's syndrome and lupus often have false positive tests for HIV antibodies, again suggesting a viral origin.

The more one learns about the real risk of complications and death from childhood diseases, the less of an anti vaccination fanatic one becomes.

As for eliminating foodstuffs, people can certainly try that, but don't expect it to work. It's rarely allergy, too, although some people have reported that eliminating solanine veggies from their diets (tomatoes, potatoes, peppers) has reduced their symptoms.

[Warpy]

13. I got sick at 14 but didn't get any sort of diagnosis until I was 27

and that's 13 years of thinking my mother was right, that I was just lazy, that it was normal to have periods when I hurt all over and could barely make it from bed to bathroom and back, and that everybody in the world had to flog themselves into doing temp jobs because they couldn't handle full time work.

Eventually, I lucked into health insurance for a few months and went from pillar to post at Mass. General Hospital. One genius finally did an immune panel and I flunked all the tests. Mystery solved, I was no longer interesting and a stuffed shirt of an old supervising doc informed me I had RA and probably an overlying other disease and that was it, don't let the door smack ya in the ass. No follow up, no suggestion to see an internist, no prescriptions, no news that there was any treatment at all. So I hustled down to the library and started to read and put myself into a deep six month depression. Most of their books were old and dated from when the illness was a hopeless one.

It was another 3 years until I started getting treatment, thanks to an ER doc who saw me for about my tenth case of "mumps." I found a good ENT doc and an internist and got at least some of the symptoms under control. I eventually managed to crawl through nursing school thanks to the CLEP program reducing my course load and was an RN for 25 years purely out of self defense against a deeply flawed medical system.

Unfortunately, the diagnosis has caused our wonderful insurance industry to declare me a nonperson, ineligible for insurance at any price. Since there are no viable candidates on either side who are willing to deal with out health care industry with honesty and compassion, I'm planning to leave.

My story is not unique. Most people, especially women, with collagen vascular diseases are labeled neurotic or depressed and handed Valium or Prozac and told to accept their roles as subservient women/workers or else. It usually is years between onset of symptoms and diagnosis and damage occurs during all of those years.

It's a perfect storm of a difficult to diagnose illness, a rushed and often distracted medical profession, an inhumane health care delivery system, and the fact that collagen vascular diseases do mimic other diseases and are likely to be dismissed as psychosomatic when those other diseases aren't confirmed.

[mopinko]

14. you never want to see this note on a test report.

ANTI-SSB (LA) 341 0-73 U/ML
This test, showing elevated anti-SSB, together with
normal anti-SSA is an unusual clinical pattern.
Interpret the results with caution and in the context
of clinical findings.

funny this old thread would bob up now. i am in the midst of a big attack that i am hoping will at least put a fucking name on this shit. doing ANOTHER short course of prednisone, to see what happens. if the damn thing would respond to the pred, we would call it sjogren's, even though i do not have much in the way of dry anything. what good it would do to have a name, i don't know. but it seems like it would make it a little easier to battle, mentally anyway.
kinda po'ed at my rheumie right now, which is always a drag. i was leaning a little heavy on the vicodins to get through a 3 day art show. he knew about this show, shot me up with lidocaine which didn't do shit, wrote the scrip for the damn things in the first place, then cut them off without talking to me about it at all. i was especially pissed because i did cut them back to the prescribed dosage the next day. luckily i did try to fill the script before i was out, and was able to taper down for a few days. but if he does that to me again, i am going to have to loose my cool. i hate not being able to chew out people who are WORKING FOR ME!! but you just can't when their prescription pad is the only thing between you and hell.

at least i now know about fibromyalgia, which i do have and probably have had all my life. that would be 30 years longer than it has been recognized as a disease by the ama. yes, i have had some fun with doctors.
i feel for you about insurance, warpy. i thank my lucky stars for being married to a guy with one of the last good jobs in america. i just don't think i would be here today if i weren't. what a horrible waste of human potential we have here. you are not the only person i know who could have added much, much more to the gdp in their lifetime with a little fucking maintenance. we treat people like rented mules.