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Hi all -

just thought i'd give a quick update after my whinings of last week. i had my appointment with my old GP in toledo on wednesday (at my parents') - who is quite up on autonomic stuff, VERY interested, and a great doc overall. i'm using her as someone to touch base with just until i get hooked up with someone in cleveland.

anyway, my back pain had not really gotten any better...or else it start to a bit and then come back worse than ever. i hadn't thought it could be a bladder/kidney infection b/c i didn't have the "typical" symptoms of pain with urination,etc. but seemingly i like to do everything the atypical way so i do in fact have an infection, likely in my kidneys b/c of where the pain is. fun, eh? score one for all those who told me to get to the doc. and another for those who made the kidney guess. and now i'm chowing down on antibiotics.

on top of that i've been told that my back seems to be curving - scoliosis - which i've never been told before, so she did some x-rays b/c of that & the back pain too. she wasn't particularly worried (nor am i) but said it was something to watch b/c of all of my falls & hypermobility and all. the x-rays were not fun, though, between the weird positions i had to get in with the standing i had to do. i was WAY too close to passing out for comfort.

and...she convinced me to get over myself and at least give sleep meds a try seeing that i haven't really gotten a good night's sleep since february. so i'm trying lunesta, which i may post about separately.

okay, that's all for now. i'm back in cleveland after being well-fed by mom for a few days. three days to get in tip-top shape (hehe) before school starts.


Edited by Sunfish
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thanks:-) and she is definitely amazing....i SO wish i could just hold on to her but know it's pretty silly to have my primary care doc 2 hours away.

we even forgot the samples of the sleep meds b/c we got sidetracked by the antibiotic samples and she brought them over to our house later that night...granted she's friends with the fam & lives down the street, but still, pretty amazing. and she had just gotten back from another patient's house who needed a shot. i wish i could get her to move to cleveland!


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Ooof, I'm feeling for you! I used to get kidney infections frequently--they really hurt. Take those sleeping pills so you can rest and heal that body...don't make me come out there! :unsure:


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I'm glad you went to the doctor so you can clear this up before school starts. I just wanted to say I think your amazing for continuing with school and getting out on your own re: of all your obsticals. I don't know if I could be as courageous as you and I admire that.

As a fellow slow gastric emptying person.how had your stomach been on mestonin? I haven't really noticed any benefit so I was curious how your doing with it.


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Guest Julia59

Melissa---------Ouch-----------so sorry to hear about your pain, but glad you found out where it was coming from.

Your Doc sounds wonderful----Good Docs in Toledo are very hard to come by-----I can tell you that from expereince. I hope you can find a doctor in Cleveland who at least comes close to the one who helped you in Toledo.

Do keep an eye on that back----your Doc was smart to catch that.

Good luck with the Sleep meds-----I hope they do the trick-------------------- :unsure:

I have a friend, bless her heart-----------who hasn't slept well in years. She finally started sleep meds----and she's really doing well on them.

Take care of yourself------------------ :(

Julie :0)

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i have been out of commission big-time too...with the not sleeping thing.

i am sooooooo glad that you got to see your PCP (who has a clue!). i had a nightmare week without my POTS doc in town and my PCP on rounds and couldn't get a hold of him...only his incompetent nurse giving him messages. i was not a happy camper.

anyway, soooo grateful you are on antibiotics now and not in a l'hopital...girl, you are lucky this didn't progress any further and you got it taken care of when you did. i cannot imagine if it had been let go any longer. thank goodness! i hope the antibiotics kick in soon and you start to feel better...and they don't give you too much trouble in and of themselves.

also, wanna know something crazy? after literally 3 weeks of NO sleep. never more than 2 hours a night, i caved. i couldn't take it anymore. i couldn't wait for my POTS doc to get back. so, i got some LUNESTA too! can you believe it? we both got it at the same time. i am on night 2. i just got the 1 mg tablets. how about you? have you taken it yet? it have gotten a bit more sleep, but still not slept that much and still not more than 2 hours at a time. i am so frustrated. it also seems to make me pretty dizzy and also hung over, so we will see. should settle with time. my friend's husband is a rep for sepracor and he said the big side effect was a metallic taste in the mouth...if you have this let me know and i will send you his 'tips' on managing it. i haven't had this problem though.

i think i will probably be off-line for a few more days...sorry....i am just wiped and need a little 'me' time i think. i don't know what my deal is. i'm blaiming it all on no sleep!

i sure hope that you start to feel better soon....in time for school!

hugs, emily

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thanks everyone:-)

i didn't even realize how badly i was hurting & how cruddy i was feeling until now that it's getting better. i'm still feeling run over & sore, but probably feel better today than i have in a good week and a half. and the moral of the story (in other words do as i say but not as i do...or rather sooner than i do....) - get to the doc when something new is going on. or...back injuries do not generally occur while sleeping (duh, melissa)

and yes nina, i'm resting mother mouse...at least until tuesday :rolleyes: wouldn't want you to have to trek out to ohio!

ernie, i'm glad we figured it out too. like we all know all too well, not knowing can be just as bad as a problem itself. and i'll let you know if i figure out how to clone this doc, k?

danya, thanks so much for your kind words. i'm starting to freak out a bit about the school thing - totally out of character for me - so they really mean a lot. i'm just hoping my body is on the same time line that i am with school starting. but of course regardless i'm in better shape than if i hadn't gotten to the doc. re: the mestinon & GI stuff, i would definitely vote that it helped me. i still have my days. and i did start zelnorm not too long before the mestinon so think it was largely the combination of the too rather than either individually. or of course there's always the possibility that my GI tract just decided to wake up a bit for absolutely no reason at all....stranger things have happened. unfortunately the last few days haven't been so hot but i'm chalking that up to the fact that my system's out of whack in general with fighting a bug, antibiotics, etc....hoping so at least.

laura, did you have to remind me?? i can't believe it's time already and i'm nervous....i feel like a little kid starting school or something. not b/c of the school part but b/c of the health stuff. it's odd b/c i can't ever remember being nervous about starting school...not for a new high school when i knew 1 person, not for college 500 miles away when i didn't know a soul...perhaps i'm regressing :) i'm excited though too, so it's not all bad :) just hoping the body cooperates....at least to get through orientation and the first week of classes (although longer would be grand!)

julie, i don't think toledo holds the monopoly on problems with docs, but i know you know that:-) i'm just saying my prayers & keeping my fingers crossed for cleveland...i'm glad your friend had luck with the sleep meds. i don't know if they're going so well for me but that's another story - er, post - for later

rose, we've missed you too (and i'm still going to reply to your GI post when i get the chance). isn't it funny how we can miss people when they're not posting but they very well may be here and reading so fully in our company. like you saying you've missed me & i'm like "what does she mean? i've been reading everything!" you mean you can't read my mind?? hehe...what can i say...i'm easily amused at the moment

em em em....what can i say? i know it's not really funny at all considering how miserable you've been, but i almost cracked up when i read that you started the lunesta the same time i did. sounds like it's not working quite as much magic for you as i would hope (or on me, but you need it more right now!) PLEASE don't tell yourself you caved by trying it....far from it. i was (and still am) super worried about your lack of sleep these days (and nights!!) and oh yeah, bet i'm even more glad than you are that i'm not camped out a l'hopital. although i do think it's cool that you decided to write in french...makes me feel smart:-) pathetic, i know. i started to go down the "what if i hadn't gone to the doc" path in my mind & stopped right quickly. it'll get me out of my "stay away from the doc" strategy for at least a little while....but i really thought it was my back! and that's what scares me a bit...b/c i thought i knew how to tell if i was having UTI issues. guess not. or rather maybe now i have another thing to add to the list. hmph. i'm just REALLY hoping this isn't the start of a pattern infections "down there." i'd kind of debunked the odds to date seeing that i haven't had a problem since i've been self-cathing in late january other than after times i've had to have a foley (after surgery, etc.) i guess it's good that i at least have a urologist here already but am hoping not to need him too much!

okay, that's all for now folks. thanks for all the support. i don't know what i'd do without ya'll. you are ALL coming to school with me on tuesday (and wednesday and thursday...everyone set your alarms!)

you haven't heard the end of me yet though...i'm going to post re: the lunesta trials....i need some more wisdom!


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