shoe Posted June 12, 2009 Report Share Posted June 12, 2009 I am new around these parts. It's been an interesting ride -- it got way too interesting the week between Christmas and New Year's... And I have questions that I could ask my doctor, but he doesn't have first hand experience (lucky guy).Shortish version -- as a kid, I had some issues. About 14 years old, I definitely had some lovely migraines (temporal lobe epilepsy was also suspected, but it never seemed to pan out that way) and there was anecdotal evidence of a mitral valve prolapse. Over the years, it seemed I didn't have an MVP. A doctor would hear it, another wouldn't, and then I was told the classification changed for MVPs and they had to be... I don't know, blessed by some higher entity.I had episodes between the ages of 14-28 that basically resulted in my being tested periodically for mono. I never had it. I think it's pretty rare I ever have had a blood test come back odd for anything -- and if one did, there was some way the doctors could say it was a fluke. I had the same doctor who heard the MVP originally say that he thought there was definitely some orthostatic intolerance going on (I was in my teens), as I would stand and frequently get light headed.These are things that I learned to kind of roll with. They were a gigantic bother, but if I was slow rising, if I made sure I didn't get overheated, it tended to only be an issue when I had those really tired periods. It's funny, because I think everyone with stuff that's ongoing learns to sort of subconsciously find workarounds and not realize they're working around anything.I left graduate school, and got my dream job in January 04, and into the summer months I did a really great job ignoring the stabbing pains in my head, behind my eyes, and in my lower legs (yowch, those killed). I figured that I was getting so tired because -- I always get tired. Maybe if I walked to work more I'd get more sunlight and I could shake it. Of course, I was getting dumb as a post (bad thing to do when you're working the reference desk -- hard to pass off your follow up reference interview question with a patron as a joke when you asked in all seriousness, "Remind me again, what state is Texas in?"). September came, I took my first vacation from work. Second day of vacation, I got in the shower, felt like I'd been smacked in the chest. I crawled out of the shower, took a nap, and I don't think I've woken up yet.Six years later (five years after I was forced to quit my dream job because no doctor really believed anything was happening except me not wanting to go to work) things got really ugly. Late December, I got up, I exercised as I'd been doing because, y'know, they tell me it will solve my problems, and my sweet, long suffering husband and I go to the mall. I get really dizzy. We come home, and I just have to lay down. I notice my hands and feet are swelling up all weirdly, and they are red. I also can't wake up. I mean, even MORE. Next day I see my GP (who was not the one I started with six years prior) to show her my swelly hands. Nurse takes my blood pressure (low), and nurse notes pulse is high. Really high. (This isn't unusual. I lost a lot of weight in that past year -- 75 lbs -- and it'd been beating aggressively since the 50 lbs lost mark) Doctor comes in, has the proverbial kittens. Checks my oxygen sat, which was at 85%. She calls 9-1-1. I feel like the biggest idiot EVER. Paramedics ask when the heart trouble started -- Last June? I get sent to the ER, where I am told I am "just anxious and I should try to calm down before I come to the ER." Right. I didn't call 9-1-1, guys. That was my physician. So for the first three months of this year, I have many tests. I lose the ability to stand up (walking with cane currently), I have a right facial droop (mild). I have pain in my calves, and my neck (insert pain in the neck jokes here). My heart rate can be 65 bpm, it can be 135 bpm in the same hour. I often roll over in bed and have heart racing. I don't have chest pain or shortness of breath, but it's really uncomfortable and hard to breathe (there's a huge difference which I am sure you guys understand but doctors don't seem to). I sweat. I sweeeeaaaaat. At night I might have to change clothes, or the sheets if I'm not wearing any bedclothes, twice... I sweat during the day, just not so badly, and not generally in the usual areas (my armpits are fine. My stomach and chest, not so much). I turn blue. My feet and legs, mostly, but my hands will do it too. They also turn burning red (as opposed to the normal freezing cold) and my veins get very defined. I hurt for a half hour after I eat. It's 80 degrees F, I am wearing sweaters. Anyway, because writing this bit has now taken two days (I am having a wicked time sitting upright for more than a half hour... SO bull)... Let me cut to right now... I ended up getting referred to a new GP by my former GP, who was going on maternity leave and had the good sense (and I totally respect and love her for this) to know that at this point, things were failing fast and I needed a new set of eyes who really had the connections (my old GP was not associated with a really big "in city" hospital) and love for mysterious sorts of things.New GP is awesome. First visit he doesn't venture a guess, nothing, just looks and listens and prods. He hears my heart do weird things like premature beats (not caught on EKGs or a 24 hour holter -- just sinus tachycardia there). He noticed the facial droop (not me or my husband... we've been a bit distracted). He noticed and was really troubled by the sweating. He was even more troubled (and took it seriously!) when he learned that I basically can only struggle to doctor's visits (and even then. I can only have one appointment in a day. I am wiped if I try more). I am 36 years old, and except for the cane. look pretty healthy. I started seeing him the beginning of May, and have seen him weekly. Last week, I was feeling particularly bad. My right leg in particular (my left does it too, but my right leg seriously has it in for me) was hurting, and I was noticing that it was harder to move and I had reduced sensation below the knee. So he whips off my shoes and says, "Your feet, they're blue." The week before that I had told him I found that generally. lying back at a 30 degree angle or so generally helped things. I didn't feel wonderful, but I felt better. So he tried it... And within 15 minutes of lying back I went from struggling to find words and get them out in the correct order (without slurring) to actually being able to carry on a somewhat normal conversation.I haven't had a tilt table test, but he's fairly sure that there's some autonomic dysregulation going on. So we still don't know which one, or if it'll be one that is actually named or some weird mix of all of them... and I've had a lot of tests and imaging studies done, so we can safely rule out some underlying causes (like any rheumatological issues, brain tumors, diabetes, vitamin deficiencies). I have had such problems with fatigue I've been taking Ritalin and Concerta ER (under the watchful eye of my sleep doctor) and while they don't help the fatigue too much most of the time, they totally make my heart rate slow to a more normal and less emphatic beating pattern. It is so weird, and every doctor who blamed the tachycardia on the stimulants never believed me when I told them -- but I've read some stuff now, in my somewhat half-alert state, that this isn't unheard of with dysautonomias.So I'm still in a state of waiting. But finally we've identified where the "broken bit" is, even if we haven't ironed out details. Of course, I'm finding that as we're closer to potentially getting me to a place where I could be feeling better we just can't get there fast enough. I have some questions, though... 1) I know that retaining urine is a common symptom. I am not sure if this is what is going on with me... I've had a long history of microhematuria (blood not visible to the naked eye in my urine). It's mostly not a problem. I mean, I wouldn't know at all if it didn't happen on all these urine tests. But I find that sometimes I'll have to pee, not badly, but I'll go... And I go, and go and go. To the extent that I would have thought that I would have been much more uncomfortable. Or I'll go, and because I'm so out of it, I can't remember if I did or not. Or I'll go, and it'll finish up.... and then I realize if I sit just a bit and try to relax, or shift position a little, I can go just as much again. I've sort of always been like that -- so I don't know if it's unusual. I guess I thought of retention as being painful, and it isn't... I don't think I always empty entirely, and I don't think I realize it. If you have problems with urine retention, is it like that? (Sad how when you kinda feel one way for so long, you totally lose sight of what's normal and what isn't).2) I use a wedge pillow when I sleep for my head (it helps me breathe better, and when I sit up to try to do other stuff, it makes my "sit up" time slightly more functional). Last night my calves were horrendously painful. Kept waking me up -- screaming (scaring the bejeebies out of my husband and dogs). Elevating my feet helped stop the screaming pain (still hurt, though). I am wondering if an adjustable bed would be worth the investment. Do any of you use one, and is there a real advantage over using wedge pillows? I can see some potential advantages, but the cost and admission there's something that wrong is still hard to wrap my head around. (On a good day, I always figure I can shove the pillows and cane in the closet and forget about it.)3) I know treating/managing is dependent on a whole lot of variables -- I tend to be someone whose symptoms/severity changes in a relapsing remitting sort of way. They never completely leave, but I'll have periods that are better than others. I am really hopeful that even bad days treated will be somewhat akin to good days now... I mean, this has got to get better. I don't expect to be climbing Everest, but I sure would like to take a trip to the pharmacy or sit through a whole movie in a theater.... I know it's a vague sort of variable number, but once treatment/management got underway, how long was it until you started to notice that the moments of feeling better (if not wonderful) were coming more often or at least were better quality?Thanks... Nice to meet you all. I just went on way too long (hooray for cut and paste to save posts when the gravity hit), but thanks for listening.shoe Quote Link to comment Share on other sites More sharing options...
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