ginger

Kite#7-- Glad to hear the positive experiences. Yes, I'm pretty open about medical/physical stuff--and I talk a lot! I figure it can only help others to be open and candid. Lynna-- I'm a bit confused by the doctor's "no kid" repsonse. Maybe I'm missing something, but we saw children walking around or in wheelchairs, some in waiting areas for testing (like xray), and lots of kids waiting for physical therapy. Here's the link to Mayo's pediatric services: http://mayoclinic.org/pediatrics-rst/ I'd suggest call up there myself and asking questions about your son. If you're local doc won't refer, maybe get another local doc to do it? If you can get a referral, I had better luck asking for or referring to specific doctor in the department I wanted. This is instead of a general department referral, like "general neurology." Best of luck to you and your son! Will let all of you know when I head back up there again. Talked to them last Friday and they are still having stall in getting the pudendal nerve block scheduled--rarely performed procedure. Bye for now Ginger

Here's one from last week at Mayo... I was all hooked up for pelvic floor biofeedback. Electrodes on either side of the anal opening and one up on my sacrum. The idea is watch the EMG monitor and get your number as close to zero as possible. Then learn... The pelvic floor is relaxed when you feel like you're gently passing gas. Mind you both the phys therapist and a student are working with me and I'm completely naked under a sheet. Well, I rolled on my side to work on some moves in that position and sure enough, the real thing started rumbling below... the real gas. I looked at the monitor and my numbers soared from the pressure. There was no hiding it from the therapists, so I had to fess up. They laughed and said, "just let it blow." Thank goodness for the sheet draped over my backside! Ginger

Guess what! It's me in person! I'm finally sitting down to check out the forum. I feel I'm out of touch with everyone, so forgive me if I've missed something. Whew! As you can see from my posts above, it's been a long and very intesting two weeks. Mayo today said have a stall in getting the pudendal nerve block appointment. I assume it's because it's a rare procedure and they have to locate the right dr to do it. So, waiting with suitcases out and ready. Morgan-- keep at it! I tried a number of times and couldn't get in. Went to Cleveland and sent tilt results to Mayo, to specific autonomic dr at Mayo, and that finally did the trick. I also barraged them with paperwork from several dorctors. So, keep the faith. Ernie-- Got a bit of your answers... Cardiologist (electrophysiologist) is the physician (other than neurologist) recommended to treat hyperadrenogenic POTS. My norephinephrine was over 500 (3x normal), but don't remember exact number. I asked why my muscles feel weak and legs fall asleep and feel very heavy longer I'm upright and dr said this is the blood pooling. I didn't get into it deeper and ask about pseudo myotonia, etc. because it was already after 6pm on a Friday and I was his last appt. I will be talking with him again, so will ask. He presecribed same for me.... propranolol, proamatine, 32oz Pedialyte each day, full length compression hose. Have you tried the hose? Nina-- Amen! No more cathing every day per urologist, just carry one along for emergency! I owe all of you a HUGE THANKS! I think I'm getting good treatment because I knew ahead of time what to expect, what to request, what to take, etc. Oh, and I have to tell you this one... while waiting for me, my husband saw Dr. Ruth Westheimer in x-ray and get this one... Howard Stern in neuro. He also saw some Arab dignitaries. Mayo annouces patient names over the intercom to come to corridors to go back with nurses/techs. So when a famous name is announced, everyone looks, and out of nowhere they come. We think they have special rooms just for famous types. Yeah, we were in the 'regular' folk waiting areas! So, I'll do some looking around the forum a bit and catch up on everyone. Oh, and I'll finish off my liter of Pedialyte for the day Ginger

Miriam-- I'm sorry to hear your frustration, especially since I'm headed there tomorrow! Actually, your experience and suggestions from others have got me in a determined state! Blackwolf... we purposely got hotel with free hot breakfast, free wireless DSL in room, and room with kitchenette... we're going to try and keep expenses down by eating in a lot, too. Besides, I doubt after the "tilt-a-whirls," as Miriam so best put them, I'll feel like eating much. Miriam, hope you can put it all together into something more meaningful... can you have a local doc call up there and get more detail? Or call yourself? Hey, put all of your well-earned "whine" in the bottle, on the shelf and someday it'll be good stuff! Ginger

Hi all-- Thanks for the questions, test requests, etc. I'm printing this out now. Ernie, I'll let you know. Thanks for the suggestions and reminders, Tearose!

Avais1-- I've read several people here wake up out of sleep and have weird reactions, tachy, etc. Last night, I woke up thrashing me head violently---in my dream a big, fat, black hairy spider had fallen from the ceiling into my shirt collar, yikes!---and as I awoke my whole body shook/trembled all over harder than ever before. Heart racing, felt weird. So, I think we potsy folk aren't weird, we just have bodies that do weird things! Ginger

Hi Miriam-- I leave Sunday for my first Mayo appt Monday with Dr. Fealey (in with Dr. Low). Since you just came back... what questions would you (or anyone) suggest at the follow-up or anytime. My husband will be along and take notes and be in charge of the "the list." I've got a few questions already, but input from all of you would be wonderful. Want me to give Dr. Low a list for you? And your phone number!? Ginger

2dizzy4now and Rachel-- Yes! We're not crazy, just happen to "hear things." Last summer when POTS really firing up (and before my official dx) I would wake up, take a shower and then as I was getting ready I heard very loud grating sound. Sometimes it was more like a TV static and sometimes more like an engine or groan, but always very loud. It would last from seconds to minutes and would eventually go away. I do experience occassional ringing and have ear pain still, especially when I'm feeling bad/dizzy. I haven't had a loud, strange one in awhile. I wonder if it's since taking Florinef and beta blocker? Ginger

CONGRATULATIONS! Sending you and your family warm wishes and sweet, blissful moments with your new baby girl! Ginger

Evening, Tea! (pun intended) What a horrible time for you! You are so full of life and joy and compassion... I just want to scream at those who have hurt you, including our lovely SS system. I can't offer advice as I may also face the same challenges. I agree with JBL... yes, yes, Tearose, write a book! Ok, since you always brighten our days and bring some humor to the forum, I pulled out a coffee table book my mom gave me a few months ago. She inscribed it, "For those days when there's not much to smile about." It's called, "Furry Logic: a Guide to Life's Little Challenges." You'll have to imagine the animal drawings. I try to take one day at a time, but sometimes several days attack me at once. (tree frog dangling from blade of grass) Never go to bed mad--stay up and fight! (two bluejays) No day is so bad that it can't be fixed with a nap. (shrew curled up napping) If at first you don't succeed, swallow all the evidence. (bull frog) I am NOT tense. Just terribly, terribly alert. (prairie dog) Life is full of challenge and frustration, but sooner or later you'll find the hairstyle you like. (green bird with wild feathers spiked on it's head?) Be yourself. Nobody is better qualified. (dodo bird) Too much of a good thing can be wonderful. (two penguins snuggling) The trouble with work is... it's so daily. (sparrow building nest) No one is listening until you make a mistake. (baboon) I never made Who's Who, but I'm featured in What's That. (some kind of bird, my daughter and I couldn't figure it out, rhea? ostrich?) If you can keep your head when all about you are losing theirs--It's quite possible you haven't grasped the situation. (llama) All power corrupts. Absolute power is kinda neat. (smiling lion) That's all for now. I'll save the rest for another time. Hope you find new strength and direction, Tearose! Ginger

Hey Blackwolf, me too! Hummm, gifted tongue and gift of gab... maybe they go together!?

I have heard of changing roses, but have never tried one. Kind of like POTS, like life, always changing colors! And each color special in its own way! Do they come in climbing versions? I want to add a climbing one this year, too. One of my favorite ones I got for birthday a few years ago is "apricot beauty." I love to eat apricots and although, my favorite color is purple, I love the apricot color rose. Ohhh, fun to think about my flowers while it's snowing outside. Hey, maybe we can have a virtual DINET garden this year... everybody post pictures of their flowers and together, we'll make a garden! Yes, getting ready for Mayo. Started to do list for the weekend and next week. A little melancholy about it. Waited so long for Mayo, yet hate the tests. But anxious for big picture answers. Yet miss my "babies" (9 daughter, 7 son) and my kitty. Kids will have lots of fun with the grandparents, so they should be ok. Have a super day. Only a little more here in DINETland and must get going on my to do list. Ginger

Nina-- Best wishes for your MRI tomorrow. I know they're easy compared to the other stuff, but it still takes time and energy! And you've had so many! We'll all be thinking of you. btw, try counting the number of bangs or clicks each set (in our mind) ... I did this once... the techs must have thought I was nuts, when I told them the number. And maybe I am! I've been following your back issues closely. Sure hope they can help you. I'm not sure my opinions on those EMGs. They hurt and I wonder how much they really tell us. I had TWO anal sphincter EMGs--major ouch--that showed damage. Well, duh, I told 'em that before and even docs guessed that before. So, was it necessary? I'll pray for you, dear. Especially about 4pm tomorrow! Ginger

1-Name: Ginger 2-Books: Well, as a former English teacher, I can't possibly just choose one. Right now, I'm going through the Dan Brown books. Also want to start another Jeanne Ray book titled, "Eat Cake"... her "Julie and Romeo" made me laugh outloud! And I need to catch up on the latest Harry Potter. 3-Movies: Oh, gosh. Much Ado About Nothing, Good Will Hunting, What Dreams May Come, Star Wars (the original 3), Harry Potter, Lord of the Rings, so many. And I must admit, all time favorite list has to include Monty Python and the Search for the Holy Grail. At Christmas, it has to include Lampoon's Christmas Vacation. 4-Happiest: with family and friends, hugs and playing and special moments with kids, gardening, fishing, skiing (well, before last year), walking (again, before), reading with kitty in my lap, time with my husband, various arts, good music, quiet moments outside in nature 5-What you don't know: I know German (college major, English minor) and traveled to Europe. I can touch the tip of my nose with my tongue and fold tongue in half at the tip (aren't you glad you asked ) Ginger

Stacey-- I hope brighter days are ahead for your dad and your family! Prayers for you all. Ginger