Posted 11/1/2009 1:39 AM (GMT -6)
Warning - this is going to go all over the place, so you might want to take notes.
Hi there! I'm new and here's my story...
I'm not sure where to begin here... well, I've felt not-quite-right since February--ok REALLY not-quite-right--and nobody can give me an answer. I'm in Ontario which translates to waiting a ridiculously long time to see a specialist of any kind. I've got two little girls (2 and 3 1/2) so not having an answer is pretty stressful when I NEED to be able to run around every day!
So... ok I don't want to spook anyone here but things seemed to get really bad after I got a flu shot last November. I'd never gotten one before but I had just started selling lottery in the mall and I'd seen one too many people cough into their hands before handing me their money. So after that shot, the first thing I noted was that my heartburn (which I've had for over 15 years) got worse. On top of that, I had started having what I guess were panic attacks--sudden unexplainable bouts of racing heart and thinking I was going to faint. Several trips to the ER resulted in four clear ECGs. Over 10 months I've tried every PPI in the book, after they decided the chest pain was inflammation from heartburn. Every single PPI makes me feel horrible, so I quit trying. Despite those, I still had bouts of chest pain. Keep that in mind, it'll come up again.
In April I started having pain in my hands to go with this weird chest pain thing... and headaches. Nasty headaches. The sort that made an ER doc give me 6 Demerol and tell me "If it gets bad enough that you have to take those, come back." CT scan was clean. Blood test after blood test was normal (CBC, various chem panels, ESR/CRP), except for the occasional rise in WBC that usually coincided with a UTI or something else I knew about. Another ER doc suggested it was some autoimmune reaction to a virus, and gave me the ridiculous dose of 30mg of prednisone a day. I weaned myself off after 3 days of feeling near-psychotic, and later found out that 30mg is a HECK of a lot... I should have suspected when the pharmacist told me "we only have 5mg pills, so you'll have to take 6." Helped nothing, at any rate. From there, my Dr started scheduling specialist appts. First stop was the head OBGYN in town, who sent me for a pelvic MRI that came back clean (no explanation for the pain and heavy bleeding there). Along the way I also developed appendicitis that took 2 days to diagnose and that one Dr tried to suggest was just stress. That didn't solve anything. Onward to a general surgeon, who scoped my stomach, did a biopsy for celiac (also neg.), treated me for h.pylori (still didn't fix anything), did a HIDA scan (ALSO perfectly normal) and sent me on my way. Somewhere in there I had an ECHO that told me I have some mitral regurgitation ("but it's nothing," so says my Dr.) and the scope also showed that I have a small hiatal hernia (SOME explanation for the chest pain there).
Still with me? I commend your perseverance!
Ok, so next stop, a rheumatologist that was out of town that I waited for MONTHS to see (over 5, to be exact). He asked me a bunch of questions, admitted that a lot of them had to do with Lupus (something several other ER docs had asked me about), and sent me for a battery of blood tests (including ANA, anti-DNA antibody, more ESR, platelet count), hand and foot x-rays, and a bone scan that I have yet to schedule (bad patient! bad!).
So, here I am, waiting until JANUARY 5TH(!!!!) to find out the results. I assume that if he found something that was going to kill me in the next two months, someone would phone me. Many days I feel OK. Most days, I have to nap on the couch in the morning because I'm exhausted - either I just am, or I couldn't get to sleep until 3-4 AM the night before (and you are not allowed to scroll up and check the timestamp on this post). On bad days--and I'm having a string of them now--my hands REALLY hurt, my ribs and back hurt, my hips and knees hurt, I'm tired, I don't feel like eating... and when it gets really bad, I lie on the couch wondering if I'm going to survive the next week or if whatever this is is going to kill me. People keep asking if I have a rash on my face, and I don't. My cheeks and nose sort of do if I get warm, like with a hot bath, or if I'm tired... my husband insists he doesn't see it. I do get hives, or rather, hive. One or two at a time, almost like a mosquito bite, but it's spontaneous. I forgot to mention that to the rheumy... oh well, I can tell him again in JANUARY.
So I wait, and I suffer, and nobody takes me seriously around here. Either "it's nothing" or I'm just being lazy.
I hope everybody here will!
(thanks for sticking it out with me there - and I'm sure there's a dozen relevant things I forgot, but my mind is all foggy right now)
Waiting for an answer since Feb. 2009...