MightyMouse

Geneva--I suppose being sick my whole life has required me to be my own medical expert. That, or I'm a MD wannabee BTW, sometimes I get carried away with the jargon and acronyms. Anyone here who wants me to explain further, just ask. We're all at differing points on this path...I still need to ask questions too. Nina

Oh, and with my blood work, the last one had a slightly elevated CO2 (31)...and I have perpetually elevated cholesterol, but my ratio is quite good (my total cholesterol is 380). Been seen by a lipid specialist who told me my ratio is one he wished he had himself. I have lots of HDL, the good stuff, which is like draino for my veins and arteries. At least SOMETHING i've got is superior to the normal folks!!! Nina

Hi there Dawn. Yep, I was told I have very slow motility (gastroparesis). Also, each of my more than half-dozen upper endoscopies shows multiple gastric eroisions, inflamatory and focal gastritis, sliding hiatal hernia, pre-pyloric edema, duodenitis, and biopsies are always H. Pylori negative. Blood work is usually only significant for elevated ANA, stains pink & speckled (Michelle and I share that feature). Ocasional elevated sed rate. Have a cyst on one of my kidneys but that's not changed in years and years. CCK HIDA scan is what resulted in my gallbladder coming out: ejection fraction at less than 30% with delayed emptying of what was being put out by my wizzened little bladder-OH-gall. Basically, more than 70% of the bile was backing up into the ducts and really hurt like *&%$. Once that was out in '95, I had a blissful year of no tummy pain. Was DELICIOUS. Since '96 I started to go through cyles of intense nausea and pain, which tend to die down to just an annoyance for months and then flare up for months. No clear onsetting or offsetting events... Levsin does work at slowing down the spasms and turning down the pain factor to be tolerable enough for me to function--even if I have dry mouth and am a little groggy, I'll trade that for pain. Thanks for listening to all my ramblings! Nina

Tea, my body is also hypersensitive to meds. I have several dangerous allergies common medications that set off hives and respiratory dificulty. Boy do I feel for you. The only med I'm taking directly (well, really, it's indirectly) for POTS is Celexa (indirect b/c they believe it acts on the CNS, not ANS, but has some mediating properties). I live on anti-allergy meds. EVERY day, I take: Zyrtec, Singulair, Advair and Benedryl. Without those things, I'm a big rash with a runny nose and red eyes. Do hang in there--try to find some small goals to meet each day. That is how I survived when I was out on medical leave and unable to drive or do any physical activity beyond lifting loaf of bread. Nina

Thanks Tearose I'd never heard of an MRCP. Hmmm. BTW, here's the very strange thing about my gallbladder. I had no stones whatsoever. It just stopped working and lost tone & size. A healthy gallbladder is the size of a small bannana, and should be a pearly greenish-yellow. Ones that have stones can get pretty big and ugly. Mine was the size of a pinky finger and was grey, and had loads of adhesions on the outside. It was stuck to my liver and had to be cut away. Not sure if maybe there was an autoimmune process or an infection. My doc does keep testng me for the autoimmune factors--but I still don't test pos for any of the more specific tests. Just a note: I DID get all my bloodwork done. That's something I don't skip. Easy enough and doesn't take up much of my time--and likely to be the first thing to kick me in the butt to get some of the other tests done or see a different doc if needed. Been seen by rheumetology many times--nothing yet although we're still watching. Oh, and this is for EVERYONE. If I haven't said so lately, I love this place! It's so cool to be able to converse with follks who either know exactly how I feel, or can at least empathize with how frustrating it can be to have a really UNIQUE symptom. I also really like that I can turn my strange bodily knowledge into something useful for others. Kind of helps me feel like this wacky body history I have can be turned into something really positive. Big smiles to you all. Nina

Sonorgram would only show fairly gross abnormalities, like a blockage, stones, major inflamtion, tumors, cysts, etc. I don't have a gallbladder anymore either. However, I've had what I call my "phantom gallbladder" attacks that started about a year after I got it out (so, since 1996). Several years ago they were thinking that I have scarring on my bile ducts, and the believe my sphincter of odi has become stenotic--they wanted to do an ERCP, for which I said NO WAY (20% of patients get pancreatitis from the procedure, which can put you out of commission for up to 8 weeks on IV heavy duty pain killers in the hospital). They've had me on the anti-yeast diet, which helped a little until we realized the problem for me wasn't yeast or bacteria, but the fact that I can't eat gluten (rye, wheat, barley products). Since the yeast free diet is relatively low carbs, I'd essentially put myself on a gluten free diet. However, after years of tinkering with the diet, other carbs don't bother me--like rice, corn, tapioca. I've had ALL the tests. HIDA scan, CCK HIDA scan, GI series, Small Bowel Series, GI motility study, Colonoscopy, Upper GI, Upper Endoscopy (x7), CAT scan, MRI, yada, yada yada. OH, and at one point last year, they did an exploratory laparoscopy. I've been throughly checked inside and out. I believe the cause is really ANS related and when I go to the doctor, all I really want is symptom controll... nonetheless, I think he's hoping to be the one to find that elusive holy grail--or at minimum, find something he can actually FIX. I don't even go there in my wishing and hoping Thanks for your thoughts on my medical test strike Nina

Well... I said I would go to the gastro, and I did last week. Big giant sigh. He flipped through and stared at all the pages of my chart like 10 times before saying..."well...let's just hope that it goes away like the other times; but just in case, go get another sonogram." That was reassuring. NOT. I think that after 6 or 7 years now, he's just at a loss for what to do with me. He's a really good doc and has never questioned my diagnosis or how much it affects me. In fact, he's been more protective than some of my other docs because he knows I really don't show up at his office unless it's REALLY bad. Haven't scheduled the sonogram. I'm on strike. Okay, I'm not really on strike but this doesn't feel any different to me than any of the other pain and nausea cycles I've been through. If it gets worse I'll go. I figured most of you could relate at not wanting to spend the time and energy on another test that's going to be read as perfectly "normal". On a good note, he refilled my Levsin, which has helped a little. Nina

It's really hard sometimes for me not to get dragged down into negative thinking. I try my best each day to think positively. Some days that works, other days, not so good I also think that it's helped to acknowledge that the way my body feels is *normal* -- for me. Doesn't stop me from hoping to feel a bit better, but I do try to stop myself from doing the "if only" self talk because I find that type of thinking really makes me feel worse mentally AND physically. On the days when it's most difficult, I set little tiny goals for myself like: if I brush my teeth today, that would be good. If I manage to bathe, that's really GREAT. I also find it helps to not stay in my jammies even if I'm not going anywhere. Gives me some semblence of routine. I'm fortunate that currently I am able to work F/T and go to grad school too. I feel like **** at night...and I feel like **** in the morning. However, I push through it. Some days that doesn't work so well and I end up staying home or missing school. Also, I have a bit of a back up morning plan if I know I'm feeling really wiped. I set my alarm on the loudest setting...and ask my spouse to call me in the morning to make sure I haven't slept through my alarm (we work different schedules). I think that having the goal to finish my doctorate has really been the only thing kicking me in the butt to get out of bed for both work and school. Work pays partially for school, and my income from work will have to pay for the rest. Also, I changed jobs several times in the past few years until I found a better match for me--I now have a 7 hour work schedule and have all the school holidays and summers off for the first time in my career. I'm SO looking forward to my summer to have a less rigorous schedule. Don't let anyone or anything take away your hope. Also, if you feel as though you cannot muster some hope, you might want to consider being seen by someone who treats depression and specializes in chronic illness. It's very common for folks to become depressed as a result of trying to adjust to major life changes such as a life-long diagnosis. In your readings you may find that some of the SSRI's used to treat depression also seem help some folks with POTS. Hang in there! Nina

Nice detective work!

Well, I no longer have the bottle because I stopped taking florinef a few months ago. Sorry Tim! those pics look familiar, but I wouldn't take my word for it! The PDR used to be available through a few sites for free, but now it's a pay-for-service thing only. I would either go to the library as Michelle suggested, or call the pharmacy and ask them to describe what the generic florinef (fludrocortisone) would look like. I have to say, the one GREAT thing about the pharmacy I use is that they ALWAYS open the bottle(s) in front of me before I pay, show me the pills and verify that they're what I expected them to be. I use Target Pharmacy now and they've really been great to me. Also, I know that if my doc is ordering a med that's not likely to be in stock (proamatine is not something they'd usually have in stock), I can call them ahead, and if they don't have it, they'll order it for me for the next day. Nina

Dawn, I am so glad that your daughter got such good treament at her appointment! At least now she'll start getting treament and have a chance at feeling a bit better than she is now. I feel for her with the migraines, I have them too. Migranal and Amerge were the best meds for me, however, my current insurance wont cover them, so I'm on Midrine. It works but messes with my stomach. Let us know how Carissa's treatment progresses. Nina

Hi Tim, my generic florinef was exactly as you described. Check the lable of your bottle--mine actually said "Generic" on it, then I called the pharmacy just to double check. As stated here a number of times already, if in doubt, don't take it until you get confirmation. Nina

No, it does not mean too many people are posting at once. The hosting system tracks your IP address, and so the "flood control warning" means that you tried to post more than once in 30 seconds from the address. Flood control is an automated gatekeeping system that keeps out those who'd want to maliciously bring down or clog up the board by rapidly posting multiple items, jamming up the server, or potentially crashing the server from a high volume of posts in a short span of time (ie. hundreds per minute). What that means for you and me is that if you post twice in rapid succession, you might get that message. Just use your "back" button on your browser, wait at least 30 seconds and try again. Nina

yes, hope the Sonata works for you. It did help me to sleep a full night but left me groggy in the morning. However, we're all different, so maybe it'll do better for you. Nina

Bentyl, zofran, etc. give me horrible dry mouth and make me too sleepy. I use sublingual levsin .125 mg. It does help a little. So does ginger tea sometimes. However, there are times when nothing seems to touch the nausea for me. Hope you find better options than I have! Nina

I have practiced buddhist meditation for several years now. Hasn't seemed to change my sleep pattern. When I was able to exercise more, I had my most restorative sleep; but since having my spinal problems which in turn limit my aerobic activities, all my sleep issues have become magnified. I'm often exhausted and able to have a "quiet" mind, but my body is still awake. Nina

Yep. That's pretty much a daily occurence for me. However, I know that if I'm over 99.5, it's more than just my weird autonomic symptoms and should probably see a doctor. My temp tends to go up if I am having allergy problems, i.e. I've been around dogs, mold, or have eaten food that I'm sensitive to. Nina

I used to be very symptomatic after an accupuncture treatment, probably because it relaxed me so much that my bp stayed pretty low. However, it helped me tremendously with migraine pain and back pain. The only drawback for me was the expense. It cost 125$ per treatment and I was supposed to go once a week... I just couldn't afford it. Nina

The only way that I sleep well is use medication. I take ambien to fall asleep. If I'm having a really hard time staying asleep, I have another medication (doxepin elixar) I can take, but I haven't used it in a few months. Nina

That's so great Pamyla! Good for you! I also recently added DHA to my vitamin regimen. Can't tell yet if it helps, but it doesn't seem to hurt. I know just how you felt after that darned test. I took it 3 years ago on computer and it was a bugger. Also just recent took a board certification exam; I'm happy to say I passed and can now sign my name legally with "Board Certified Associate Behavior Analyst" Wooo HoooOOOoo! Nina, BCABA

Hi Michelle, that would probably suit me quite well! Finally, a place to put my thousands of tidbits of geeky info to practical use It it is on the web somewhere, I will find it!! As for my time with the kids...well... so far so good, but there are days when I can at least now entertain a new vocation Nina

What's really weird for me is that I used to have such low bp all the time...and anything over 120/80 for me was REALLY high. Over the past few years, my baseline bp has climbed. I can no longer tolerate florinef because it sent my baseline way way way too high. My doc has called it "labile hypertension"--so my bp is all over the map, swinging really high and really low. Oy. I wonder if the higher base bp is a result of my long term use of Celexa. Hmm. Who knows! guess I'll find out more when I wash out of all my meds for my NIH trip over the summer. Nina

Hey there Purple, I'm not sure what the law says about the fact that you're not fired...but you're not allowed to go into work. While you've got the extra time at home, you may want to do a little reading to find out! I've collected some links for you: http://www.abanet.org/public.html This one is a government document; you may be able to find some phone numbers for folks who can give you more exact info regarding your specific situation: http://www.usdoj.gov/crt/ada/cguide.htm And...this one offers a toll free number for legal assistance to persons with disabilities: http://www.dlrp.org/ Let us know how this all works out. Nina

Okay, I think it was the pain too... that's what I tried to tell the nurse at the office, who got annoyed with me because I argued with her when she told me I needed to go see my GP and get my bp rechecked and that I needed to consider meds for my high bp. I kept telling her that 1) I have a known disorder that leaves my bp unregulated and that 2) I was in a lot of pain. I told her that I'd get it checked at home b/c I have my own monitor and she said "no, you really need to see your doctor." Grrr. Anyway, a few hours after I wrote the initial post, I'd taken 2 levsin (antispasm drug for my GI pain) and my bp normalized to 120/80. How about that. Thanks for listening! Nina