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Hit ice and snow on drive up, but quick trip Sunday.

Started right in Monday with a parade of appointments and tests. Had to wait 2 hours for first dr. appt--great start!--but then spent 2 hours with him. So, I did get my money's worth! Then test after test after test.

blood and urine tests the dreaded tilt table test, checking heart rate and blood pressure in response to tilt deep breathing and HR/BP response

Valsalva manuever (holding pressure while blowing steady) for HR/BP response

Tuesday, guess what?! More tests!

More blood and urine tests, inlcuding 24 hr urine catch...yuck! My dearest husband even toted around the container for me... what we do for love! MRI Xrays urology exam and urodynamic study (another yucky one) And today I saw one of the urology specialists. Good visit and more tests ordered, of course.

Tomorrow... and you guessed it, more tests. Yes, for those I've told about it, it's the orange powder one under a heat lamp. Gynecology consult/exam. Well, and probably more tests added by the end of the day. And tests on the schedule already for Thursday, including esophagus xrays (videofluroscopy), back to urology doc... and so on. Final test on the schedule right not is March 2--although trying to get that one moved up--for psych well-being test. It's supposedly routine out of the neurology dept appts, but Scott says it's long overdue! Funny guy. And he was the one carrying around my specimens. I guess it's a way to measure stress/anxiety. Yeah, right.

Overall, this is an amazing place. Everything, everyone works very smoothly together. Everyone very helpful. Shuttles are definately the way to go. Don't try to drive and find parking. There's a subway below all the buildings that connects them all... lots of shopping, places to eat, and certainly, lots of interesting people! They really keep you hopping on schedules. We've had to skip eating or go cram down a bite between appointments. Then sometimes you feel like, "hurry up and wait, hurry up and wait."

Here's an interesting event for Scott. He saw Dr. Ruth Westheimer in the waiting room at xrays. They called out her name and everyone looked up. No, he didn't ask her for tips.

Have talked to some interesting folks in the waiting rooms. See sad situations. Reminds us there are bigger problems than our own. Really sad to see the kids.

Ok, that's it for my first entry. No big news, yet. Still evaluating, testing. Feel pretty wiped out, but glad to be here and hopefully, getting to the bottom of this--literally.

All for now. Thank you for your prayers... they keep me strong!

Ginger and Scott

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Hi all--

Here's Ginger's Mayo Diary entry #2 created Friday, February 11 in the lobby of our hotel....

Tuesday through Friday included, of course, many more tests and some more consults, which meant ordering more tests.

Thermoregulatory sweat test

Barium esophagus xray

2-day bladder diary (yes, more specimens to measure)

MRI lumbar

Pelvic x-rays

Kidney ultrasound

Gyn exam and consult

Urology exam and consult

Urodynamic study

Physical Medicine/Therapy consult

Pelvic floor physical therapy session (#1 of many to come)

Psych test (no, I'm not insane, well maybe, just routine for neuro cases)

Plasma Norepinephrine test

Wow, I think that's all of them.

Got a surpise with the Gyn visit. I already knew I had a cystocele (bladder drop), and I knew the uterus was also falling, but didn't realize how bad. So, stage 2 (4 hangs out body) cystocele and stage 3 (4 hands out of body) uterine prolapse. So, pelvic reconstruction will be in order. Will get final discussions on that part next week.

MRI was unremarkable. Pelvic xrays now show degeneration (arthritis) in the SI joint and at tops of femurs (hips). Don't know results of norephinephrine, tilt test/autonomic testing, and a few others yet.

Ok, the weirdest test I've had to date... you all know my favorite color is purple. Well, I can now say I've been purple, as in deep, plum purple!!!! Head to toe!!!! The thermoregulatory sweat test is only done in a few places in the world. Start out naked on a table, carefully folded sheets make a mock bikini. Then the tech sprinkles on an orange poweder exclaiming, "it's Cheetos time!" The entire top of me is coverd in the powder, a combo of starch and iodine. Then a few temp electrodes along body and in mouth, sunglasses, and then into the oven! The goal is to increase my temp to 38 deg C and turn me all purple! They are looking for sweat irregularities and/or denervation. It took 46 minutes under heat lamps to get me there. And then when I came out... unbelievable! Dark purple! They take pictures. My toes and fingertips and a little on my thighs did not turn like they were supposed to, so maybe some denervation there. Took several showers and a couple days to get the pink tinge out of skin. They said I could ask my neuro doc for a copy of the picture to prove to my family! What an experience!

So, next week includes urology follow-up to address bladder and pelvic reconstruction. Also includes follow-up with neuro to put all results together and see what's next. And, I've been scheduled for pelvic floor therapy for next week.

Scott and I are trying to figure out what we want to do this weekend. Maybe run over to Cabella's or Mall of America, but I couldn't handle much...well, it is shopping, though. :-) We miss the kids and hanker for our own bed.

As I've said before, this is a really incredible place. Met lots of people from all over world. If any of you come, be sure to talk to people around you. Makes waiting for appts. more interesting. We treated ourselves to nice dinner tonight. Scott even got snow crab legs. Usually cook in our room or grab sandwich between appts.

All for this entry.

Ginger and Scott in medical land

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Guest tearose

Hi Ginger and Scott!

I hung on every word in your first entry.

I am reminded of the "AWE" of Mayo as you relive your experiences in your next entry.

Thank you so much for sharing this with us.

It reminds me of how fortunate we are to have these unique testing and diagnostic tools.

...I wish we knew how to get the right tests, and the right doctors and then feel better!

Keep your news coming.

tearose

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Hi all! It's Ginger's Mayo diary entry #3

We're at home today! :-) Came home for at least the weekend and Monday before going back for a couple more things. The kids were so excited to have us back. Kitty was happy, too. And, of course, there's nothing like your own bed.

This last week (week #2) at Mayo included follow-up visit with urology, pelvic floor/physical therapy, neuro follow-up...

Urology good news... my bladder is improving and I can stop cathing every day and just carry around cath for emergency only. Just have to make sure I do timed voids and keep pelvic floor relaxed enough to go. The urologist was absolutely fabulous! She explained that I had a neurpraxia (nerve injury) at the time of the accident and now, at least the nerves controlling bladder function, are regenerating! So, that's great news. She also helped us put in perspective the pelvic reconstruction needed... I need to keep the big picture in mind. The pelvic reconstruction (including hysterectomy) can wait a bit longer. She suggested at least 6 months addressing the autonomic and other nerve issues and pelvic floor therapy before any surgery as the surgery could trigger the same muscle spasms in the pelvic floor as the accident. She also recommended a pudendal nerve block to try and alleviate the pudendal nerve pain/burn. And, lastly, she noted hyperflexible/mobile joints/connective tissue.

Therapy...I've learned a lot this week. They are using first diathermy heat on the pelvic floor muscles and then biofeedback. The biofeedback helps me learn the best positions to keep my pelvic floor from spasming, while at the same time strengthening my core muscles. I have a Rx to continue therapy here in Peoria and also instructions for stretching/strengthening at home. Have a fine line to watch... want to get rid of pelvic floor spasms, but keep strength to hold up organs that are falling down. I got an A for effort and progress this week!

And lastly, the neuro follow-up...the conclusion thus far is hyperadrenogenic postural orthostatic tachycardia syndrome (POTS) with dysfunction in vasoconstriction in the legs. I'm what they call a "pooler." The leg vessels don't vasoconstrict and when I stand, blood pools in the legs. Thus the body reacts reflexively to compensate: tachycardia (fast heart rate), chest pain, big increase in norephinephrine (3x normal increase per test), and difficulty breathing. I also get some dropping of blood pressure which brings on more dizziness, ear pain, goosebumps, etc. Also get cold fingers and toes, runny nose, and legs feel like heavy weights. Also, my sodium levels were only half of what they should be. Forgot to ask why or cause. (Where does it go?) Treatment/management is next step (no cure): ease back into beta blocker; 16oz electrolyte drink first thing in am, 8oz at lunch, 8oz at dinner (Pedialyte recommended); full length compression hose (I hate this one); monitor BP/HR several times throughout day; then midodrine, a vasoconstrictor.

There's also mind-body connection at work. Anxiety can add to the problem and the problem can bring on anxiety. Trying to deal with ongoing physical pain and disability is something I'm still dealing with and I may look up local phsych consult to see if I'm missing out on some different or better coping skills, although I'm blessed to have a super family, friends and community offering love and support. And, I know, God is looking over us. Just so you know, it's awfully hard for a Type A personality like myself to admit I may need some mental management in this whole thing.

There's suspicion by several docs that the pudendal nerve could be causing nerve pain since the accident. Could be entrapped, scar tissue, inflamed, etc. So, I will go back likely next week for a pudendal nerve block as both diagnosis and treatment. It's a rare procedure only done in a few places. Under CT, guide needles/injections of cortisone through butt into space inside the ischial tuberocities (butt sitting bones) and into pudendal nerve area. Sounds, fun, huh!? But if it brings relief from the burn that's been there since last Jan, then super! If not, then we'll all go back to drawing board.

Next week, I'm also going to be scheduled for testing for a connective tissue disorder, specifically Ehlers-Danlos syndrome. We'll see what that brings.

Whew. I'm tired. Scott's tired. BUT, we have a plan to move forward with treatment and with some more fine-tuning tests. Oh, and neuro doc said I could get a copy of the "purple me" picture! :-) I just drank my first Pedialyte here (has more sodium and half the calories/carbs than Gatorade, which I used before, but tastes icky). And, I need to do some stretching.

I'm quite graphic and detailed in my entries--well, because I'm Ginger--but also, because maybe it will help someone else, somewhere, sometime. We all have to do a better job of challenging our doctors, getting second opinions, demanding time we need at appointments, being open to discuss our issues with family and the docs, and lastly, be willing to do what's necessary to get better--like it or not.

I thank the Lord for all of you and your continued love and support. It's a long road ahead, but I do have some hope for treatment/management that can bring back some of the things I love doing in life!

Ginger

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Thanks Ginger for sharing the good news (your progress at Mayo) with us. You are in really good hands and I am glad that the doctors are trying to find solutions for you. You will know your body from A-Z after you're done!

Keep up the good work.

Ernie

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Guest tearose

Wow that was some experience! And you make it sound like you learned a lot!

Thank you for the update again and welcome back!

hope this next trip is the last for a long while!

best regards, tearose

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Ginger, it's good to hear that your bladder is improving! I hope you'll be able to get completely off the catheter at some point.

Nina

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Hi Ginger, you are really being put through the mill at Mayo....is there a test they haven't done on you?? Just kidding but very impressed that you are getting such thorough attention and hopefully in the end, a comprehensive treatment plan.

Glad you got to go home and see the kids!

good luck at your next visit.

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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! B)

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! :D

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 :D

Ginger

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Hi Ginger,

Nice to hear from you "in person".

Yes, I wear my hoses every day. It makes a big difference has I can remain upright x2 more time when I wear them. It's funny that they prescribed you the same medication as I am taking. We must be very similar, medically! Thanks for asking about the myotonia. I am looking forward to have their hypothesis.

Ernie

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Ginger,

My wife and I were looking thru the net last nite and while taking a break ; she had to drive the kids (5) to the video store friday nite ritual here, I did a purusal of the forum and saw your thread. Wow It was almost my experience to a "T". I went to the Mayo twice last year. Each time for 2 week stints. Both times included testing that was forien to me and long some painful - oh and "PURPLE" . It wasboth the most inspiring place to be and the most fearsome. I felt like finally after years I would get answers. The staff is well -- incredible its like taking your car into a formula 1 garage for maitaince.

My 2 visits were about 6 months apart and the degree to which my symptoms had progressed Dysautonomia was diagnosed right away 2nd visit . they wanted to keep me 2-3 weeks longer . but We were unable at that point as our kids were starting school and the costs of the testing were ringing up. We felt to that we basically had as much info , from an imperical standpoint that one needed. WE keep in touch with our "home" Doctor at the Mayo with regard to any change in drug regimen or complications. It is and he is the best on earth PERIOD. Ginger your are right to say that it gives you more than a modicum of perspective being there. I would suggest being in Rochester itself as it is a wonderful town/city.

Lastly Ginger thanks for your candor putting your experience online like that I'm sure that it reacquaints many of us with our own victories.

See ya CHEERS Kite#7

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Ginger,

I'm glad that you will hopefully have the answers you have been searching for.

I noticed that you mentioned that you felt sorry to see all of the kids in the waiting room. My son's cardiologist told me that none of the clinics saw kids younger than 18 years of age and refused to refer us out.

We are desperate to find answers for him. He is 13 years of age and went from playing basketball one week to needing a wheel chair the next. Please let me know where you were that you saw kids and if they were younger than 18.

I would also like to know what the test were like. Which ones were the most painful or the most difficult to go through and why they (the doctors) felt they were necessary in the diganosis and treatment.

I wish you luck!

Lynna

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Kite#7-- Glad to hear the positive experiences. Yes, I'm pretty open about medical/physical stuff--and I talk a lot! :D 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

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