Mayo Clinic trip
 

In talking to Liza Jane last night, she convinced me to start a sorta "blog" about my trip to Mayo here on the forum. My husband and I leave in the morning on a three day trip to get to the famed Mayo Clinic in Rochester, Minn. We are traveling by van. He made me a foam and memory foam mattress that is going to take up one side of the van. I'm making this trip laying (never have been able to remember laying vs lying, so just bear with these errors when I make them) on that foam mattress. I expect to see a lot of different shapes of clouds, various birds and the intermittant rain drops.
Oh yeah..forgot...probably a few rest stops too.

We are going from Texas up thru Oklahoma to Des Moine West Clive, Iowa first, then to Joplin, Mo. and then to Rochester Minn. We are starting this trip with ice/snow, sleet/freezing rain threatening. We don't know what we will run into weatherwise on the trip. It's rather a daunting trip even without all of the weather. With the weather, it's downright scary.

So if any of you aren't interested, just skip this thread. I'll be keeping you all up to date on what tests are run, what I thought about them and anything else I'm able to glean out of the visit to this place. I'm supposed to see the head of neurology, Dr. Peter J. Dyck first. We hope to find the answer to a lot of medical problems that have gone undiagnosed so far in relation to the neuropathy symptoms, possible pudendal neuropathy, Sjogrens, eyes, etc. They will have their hands full with me. I'm taking them a basketful of complaints.

And Liza Jane said to throw in some about my trip. So, unless you all tell me you could care less and to shut up and quit blabbering about this adventure. Here begins my journey.....

Billye

Keep us posted, Billye.
Is that Dr's name prononced like ****, or Dike?
Would you believe that this site censored "D-I-C-K"?
What happens when we talk about the children's book
**** & Jane ? Betcha happens again!
Yup! :(

Just wanted to wish you two a safe trip and i hope they can find some answers.

Safe Trip
 

Billye, I hope you have a very safe trip and that this adventure will identify all you hope it will. I don't post much, but I do enjoy reading others' experiences as I do get a wealth of information from those experiences that also apply to my PN, so please keep blogging away:) .

a fellow pn'er
Diana

I for one..
 

am very interested... and wish you some useful therapeutic results.

I will be looking at this thread everyday... following your adventure.

And yes, how unlucky to have this weather squall just at your traveling time!:eek:

Wishing you a safe, bearable trip! I would allow extra travel time for sure.;)

Good luck to you
 

Good luck on your trip to Mayo. I was there in 1988. Spent about 5 days there for testing and seeing various specialists for Fibro and all the other unusual medical conditions that the pain mang. dr. was concerned about.
Best wishes for a successful form of treatment.
Sydney

We'll be waiting...
 

For reports of save trip and great treatments - go girl!!!!!! Sendind very good thoughts.....:)

OH MY! Billye, I just want to KNOW what....
 

the whole, mystical 'Mayo experience' is all about! If Ihave to go anywhere for the super detail, I'm nearest Hopkins, but, I surely would like some base of comparison? Each has it's own charms I am sure, but....the overalls, as well as the absurds we experience along the whole journey are all worthwhile!
I guess it's because my last few experiences 'hospital wise' have been absolute zeroes in terms of short-intermediate &long term care.
Gee whizz Billye, I desparately want HOPE for YOU and for me!!!!!!!

Without those carrottes, what/where are we? I LIKE crumbs!
Besides, you are bound to have some quirks in your trip that have a wry are funny twist to them throughout - I am gonna be worse than others here, I PLAIN WANNA KNOW ALL ABOUT ALL?
I'm surely hoping that request isn't too, well, Crass? It will/would help me decide IF or when I need to make a similar trip.

For the interim, please have smoothe roads and no weather or snarls of other contrivances. Hugs and heaps and heaps of insulating warm and bump-wise bunches to ease the way! - Hugs - j

I will certainly be reading with interest--
 

--both the medical and non-medical experiences.

Don't forget to mention to Dr. Dyck you have a community of hundreds, perhaps thousands, to bounce test/symptom data off of. (Be interesting to see how docs at Mayo respond to the growing Internet presence in medicine.)

Be comfortable. Be well.

Good luck Billye!
Remember, if I can be of help to you, just ask. I am now part owner of Mayo--didn't you get the memo? It's now called JS et al Mayo Clinic! :D

Do you have the first name of your Dr. right? I tried looking him up and couldn't find that first name.
http://www.mayoclinic.org/neurology-rst/doctors.html
Or maybe he's a new physician. That could be it too. Anyway, good luck!
Hugs,
Jan :)

Dear Billye,

Have a safe and productive trip. You're well prepared to make the most of what Mayo has to offer.

I love storms, including driving in them. Do you have four wheel drive? Snow tires? Chains are a pain, but you might want to bring a set along just in case. You can pick some up on the way BEFORE encountering icy roads. I hope you're leaving yourself some extra time for the weather so you and hubby don't stress out.

Good luck and Godspeed!

===========================

I just looked at the national weather forcast: http://www.wunderground.com/US/Regio...xpxFronts.html . With luck you'll follow the worst of it, but the roads may be icy. You should be under high pressure tomorrow. High pressure makes for cold, clear skies. As it sayeth in the Bible, "Get thee chains and fresh antifreeze before thy needeth them."

Oh, Glenn...
 

you DEVIL you! LOL

Even better...tell Dr. Dyck you are a researcher stringer for CNN! LOLOLOL:D

Need another brain!! Really messed up.
 

I absolutely am requesting a new brain when I get to Mayo. I tried to do this
post twice and keep messing up. Heaven help my poor husband when I try to work the new laptop.

Just wanted to thank all of you so much for your caring and support. Need to straighten out a mess I made earlier:

The doctor I'm seeing at Mayo is Dr. Peter J. Dyck. not David Dyck. I used to work with a man named David ""D..I...C..K.", so the name came automatically to my very overcrowded brain. Thanks Janster, for making me realize this. When you couldn't find him, I realized what I'd done.

The weather is really bad. Sleet, freezing rain, snow all day to day and the temp is in the mid 20's right now. We will be o.k tomorrow here in Texas when the temps warm up tomorrow. But it looks like the storm may dump 10-12 inches of snow tonight in the Oklahoma area we have to go thru. We'll look at the situation tomorrow and we are looking at some way to go around it. We allowed an extra day for the trip up. Looks like we will need it.

Nope, we don't have chain and it's not a 4-wheel drive, but it is a front wheel drive. It also doesn't have the interior the one we tried out and thought we were getting. But we are making do. No time to do anything else. We got the foam bed in today to check it out. Had to rethink it because of the changes, but it looks like it will work.

It's late, and I've still got things to do before tonight.
Thanks for all the support you guys!! I feel like I have a real family here.

Love to all,
Billye

p.s. You are going to get sick of me. But you can just skip this thread.

No tire chains in Minnesota!
 

David:

Hate to tell you this, but no one in Minnesota uses tires chains anymore - they are illegal on our roads. But it is crucial to have a good battery and good snow tires help. Mayo Clinic is in Rochester, MN and frequently Rochester has big snows.

We in Minnesota when traveling have emergency food, blankets, etc. in the car. Jumper cables are in most of our car trunks just in case our battery gets weak and won't start the car. At least one can get to someplace to get the battery charged or buy a new one.

If caught in a bad snowstorm stick with the car - do not try to go for help during a snowstorm here! The weather reports here are excellent and it is best to know what is being forecast for any trip that is planned.

Shirley H. in Minneapolis, MN

Billye,

I am very glad that LJ convinced you to blog about the trip. Hopefully, it will be of value to you - maybe focus your thoughts, not forget things that you need to bring up, venting, etc, etc. And I am quite sure it will be helpful for others. Over the years, we always have folks who are thinking about going there. Now, I don't want to put any pressure on you to produce the DEFINITIVE thread . . , but I will look forward to a good read.

rfinney

Hey, Billye, well, you know where I stand on the blog issue--I want to hear all about this, and more! I'm bummed for you about the weather---just drive safely; I know you'll have blankets in the car, but also--flashlights or candles? and emergency flares and all?

The candles will come in handy in your fancy hotel room!

XO
LJ

Good Luck Billye!
 

We will be thinking of you and hoping you have a very safe trip and get some well-deserved help...

I don't know what blog LizaJane is talking about. If someone knows of a blog, she has, please post a link, so I can read it, too.

I don't know what the temp is going to do here in the Dallas area today. When I was outside a little while ago, it was bordering 20 at my house. The noise I heard in the back yard was the T-Connector at our hose, which burst from freezing and covered the back yard during the night, along with the alley behind the house... You may want to cover your outside faucets... We forgot!

Good luck,
Cathie

You're the expert
 

I think the last ice storm or blizzard we had here in San Diego was approximately 23,347 B.C. during the last Ice Age. :D

Chains were legal in Oregon when I lived there. I can't imagine driving the steep Cascade mountain passes without them. I know that they chew up the roads and their noise and vibration make them hard to tolerate on level highways.

I'll worry about Billye until we hear from her. That's a long drive under the best of circumstances when you're ill and feeling lousy.

Chains again
 

David:

I can understand how chains have to be used on tires in the mountains with the heavy snows that fall there.

Tire chains used to be legal here in MN and I remember seeing my husband put them on. What a pain they looked like to me - putting them on and taking them off. I guess they did such a number on highways that the State Legislature outlawed them. It's been decades since anyone here used them.

I hope that trip to the Mayo Clinic goes all right. Right now we are escaping all the snowstorms. The radio weather guys are saying we might get flurries tonight but that is no problem. They do warn about "Black Ice though - that is the ice formed on highways and bridge decks by exhaust fumes. Winters here in the Far North can be quite the driving challenge.

Shirley H.

Billye's update
 

Billye and her husband left Texas today for Rochester, despite the horrible horrible weather. She called me tonight to tell me she's having internet problems and exhaustion, and will probably not be able to post until tomorrow. So this is her brief report. The van was not ideal, and lying on the mattress as it was set up for today did not work well. They had to take a detour around the worst of the weather, which lengthened the time on the road, and the time she had to lie on the miserable mattress setup, with sun in her eyes. They're not ensconced in their motel, both exhausted, and unable to do email, and too tired and shaky to type.

But hopefully, knowing the van setup a bit better, she'll be able to make herself more comfortable tomorrow, and have an easier day of it.

I'm going to put up another posting, instructions on how to set up her computer to get her webmail, as this will make it easier for her when she or her husband have the energy to struggle with this. So, you can all ignore that next post--it won't have anything of interest.

She sends her best wishes to all.

Billye-to set up your email
 

Can I access my email when I'm not at home?

A: Yes. to access your email when you're traveling or when you're not near your computer, you can use any computer with a web browser and a connection to the internet.

To check your email using a browser, follow these steps:

1 Open up a web browser and type in webmail.argontech.net in the address bar.

2. You'll receive a couple of security warnings. Answer 'yes' or 'ok' to both.


3. Once you get to the login screen, enter your email username and password.

Please note that your email username and password are not necessarily the same as your connection username and password.
The email username is always the first part of the email address you're trying to check.

For example:
If your email address is 'yourname@argontech.net' then your email username is 'yourname.'

4 Once you've entered both the email username and password, click on the 'log in' button.

You can now receive and send email and attachments.


Note: Through our Webmail interface, you cannot view email you have previously received through your email program. Only new emails will show in your Webmail Inbox.
back to top

Billye--if you have trouble after doing this, go to Tools on the top of your browser page, Internet Options, and look to see how you can lower the security settings. Make webmail.argontech.net a trusted site. Make sure you're allowing popups---that was a problem for me when I tried to use webmail on my computer.

If you still have problems, I'd suggest going to the computer forum on neurotalk and telling folk there; people answer quickly there and are way more knowledgeable than I am about how to lower your security settings on the laptop.

Love ya,
LJ

Second wind
 

Liza Jane,
Thanks so much for the help. It's 9:14 and I've gotten my second wind. But..typing at this desk is the pits. I definitely don't like laptops.

As Liza Jane told you all, the trip is another pit..The mountains of Oklahoma got hit hard with this weather. Big truck, cars and other vehicles off the road in ditches. People who don't live in the weather corridor down thru Oklahoma and N.E. Texas don't realize we see the most bizarre weather. The Okla. weather bureau said the trip route got the worst weather they've had any a very long time. We detoured around the part we couldn't get thru today, but are behind in our timing. We are hoping we can get out of here tomorrow. Did you ever hear of Muskogee, Okla.? We are there!!

I had planned to give you a very picturesque blog here with some real details about trying to do this trip. But my back and butt aren't cooperating. And...I've never used this laptop. Really don't like laptops.

Thanks all of you.

Billye

Hi Billye
 

Good to see you are feelihg well enough to type - now get some rest!!!!!! Will be sending warm thoughts for nicer weather - and an easier day tomorrow..... You take care!

:) :) :)

Good Morning Neurotalk!
 

We had a good night. I slept hard and so did hubbie. Just finished a wholewheat bagel w/cream cheese and a bowl of fruit for David. :p My spirit is back, I lost it yesterday. I felt so battered and beatdown. We got the report from the house sitter with our dogs last night. They didn't eat her and actually cooperated with her. One fingernail chewing problem over with. Now we plan to leave here to travel to Des Moine, Iowa today. It will be a long day.

I had something happen last night that is new to me. You all know how hard motel/hotel mattresses are. My legs kept going to sleep and I never have it happen at home unless I sleep wrong in some way. So a pressure relieving mattress is important when you have PN. I sleep on a Temperpedic at home.

Mrs.D, I brought my vitamins and minerals, Mayo wants them too along with the medicines. It took a whole bag for all the vitamins, mineral, and the ever ready medicines.

Must go..gotta start getting ready to leave for the next part of this journey.

Billye

Hi Billye
 

That is so neat that you can post as you are traveling along to Rochester. I haven't watched the weather in the last 24 hours, but hope that the roads have been cleared off, so you have an easier time getting there.

Ordinarily, I would love to see snow, since it isn't seen very often in our neck of the woods-not under these circumstances though... It is a good thing you allowed an extra day to get there... What time/day do you have to report in to Mayo?

Cathie

Billye, your trip....
 

is at the fore of my mind... I've not watched the Weather Channel soo much since Katrina!
Hoping to keep you both safe in my heart - j

Still here
 

I'm still here. We've been on the road for almost 9 hours. We're in Des Moines Iowa and back on the scheule. But not without a price. I'm vibrating so very badly, hearing seems to be very affected. And I'm very trembly. The car seems to irritate the nervous system or maybe it is the exhaustiion. This will be brief but hopefully I will be able to sleep and get back to myself. Cathie, we have to be at Mayo on Monday morning at 7:45 a.m. Gotta stop, too hard to type.

Billye

Car trips...
 

can really stress you out... sitting in different positions, tensing up
without realizing it, etc.

I'll be very interested in what Mayo thinks of your supplements, Billye.
Their website is really not exactly up to date on some things...the B12 for
example. So we'll see. I'm not optimistic on that score.

But I do hope they endorse IVIG so you can finally try that.

I've had to drive in this weather to and from work..in the dark... and it has
been stressful for me too. (but not all day--only 45 min each way).

I tend to tense up in cars, always have. That makes it very hard on
nerves/muscles. So I hope you can relax in the motels/hotels.

I hope you get some good rest tonight! Thanks for the updates;)

I'm baccccckkkk folks
 

I couldn't stop the vibrating last night and then after I ate and took the nightime pills the terrible vibrations seemed to settle down some. Wonder which one of these did it? Ambien, 150 mg Lyrica, Indomethecin and Trammadol. I had taken 50 mg of Lyrica and 50 at noon and Tramadol about mid day. None of those taken in that order had any effect on the trembles or the vibration until the dose last night.

Didn't sleep as well last night but o.k. It's about 13 degrees here this morning and I understand where we are going is even colder with some snow expected. Now I know why I live in TEXAS! Cold isn't for southern girls.

Still cannot get my emails to go inspite of the changes Liza Jane gave me. I think maybe we got them fixed late last night, so I sent Liza Jane a message and will know tonight. Ahh..the perils of travel. no email..woe is me.

More good stuff to come.

Billye

Hi Billye:
 

Well hello there, my little Eskimo!!!!

13 degrees and you're still alive???? God Bless you!!!!

I HATE THE COLD. And I don't even have any of the stuff you guys go through. I can't imagine having these things and being in 13 degree weather.

I do hope you are wrapped up like a christmas tree. Do they sell those little hand warmer things that you stick inside your boots and your gloves. Alan and I used to sell these at flea markets years ago.

You would think I would have kept some for myself now don't you?? Can't find any of those around here. I'm going to look online.

p.s. I just did. here's what i'm talking about:

http://cgi.ebay.com/40-hand-warmers-...QQcmdZViewItem

Those are the best things to slip inside your gloves and boots. Keeps your whole body warm.

Oh I know, I'll get some and put them on my head. I don't care how stupid I'll look. I'll be warm.

So good luck on your journey. I'm glad you got the laptop.

all the best.
Melody

When you get to a nice restaurant, ORDER SOME PATATAS.

Hi Billye
 

Glad to see you guys had another safe but tiring day - the vibrations could be just exhaustion - I get like that just from being out to the doc etc.... getting rest and sleep seems to help...

Hope you get to your destination tonight safely for a good nights sleep and be ready for Mayo Monday!

Warm thoughts......:)

Go Billye . . .
 

Even when you can't email or post, you just gotta know that we will all be here cheering you on - and perhaps even cheering each other on for who knows what - well, I think, uh, I hope you get the idea!

I actually envy you right now. I just LOVE the cold weather. It numbs my feet and I find that I can do more walking . . and do more of just about anything. Now if I can just remember to check for frostbite :)

Actually, the only thing about the cold weather that is a teensy, weensy problem is any kind of precipitation (I can't wear socks or shoes, just special made open sandals).

Hmmm, did you say snow expected??? Ok, my fantasy is over. I think I'll stay put, thank you very much. Have fun.

rfinney

It's Sunday, so this must be ROCHESTER! Ya there?

Sorry I didn't check my email to write you back last night, but I did send back today. I did get the test email and replied.

Get out those uggy boots and down blanket and be warm as you can.

I know wine dries you out, but you and Len deserve some champagne and dark chocolate just now, at the least. Maybe caviar! Well, just rest up for tomorrow, the first day of test....

Love to you,

Probably won't make any difference....
 

but, I'm mentally sending you the PERFECT tropical breezes to warm your way...if only in the mind!
Also a lot of very POSITIVE thoughts that they will be able to conjure up SOMETHING to soften your pain.
Heaps of hugs and warmth - j

Third message
 

This is a test. The third message I've posted.

Billye

Billye:

I am conjuring up a virtual meal of my Sesame ginger Chicken, sweet potato pie smothered in marshmellows and brown sugar, my vegetable souffle (light and fluffy) and MY PATATAS!!!!!

Bon virtual Appetite.

melody

We are in Rochester!!
 

We got here. I've tried to post a message three times. When I go back they aren't there.

Hoping this one goes thru.

Long hard trip. Weather really terrible. A van trip for someone in this condition is not advisable. Vibrating and trembling so bad.

Kmeb, I suspect you are right. It is all settled down when I get up and by noon is bad again. The constant effort of staying out of the sun is really wearing. Muscles are all sore. Legs are very stiff and sore but then so is all the body. When I walk it feels like I'm walking on logs.

Rochester from our direction is really easy to get to under normal conditions. Easy to follow route. The hotel we are in has wheelchairs for use in the hotel. Suspect all of them do, so inquire. Mayo also provides them within the complex. I've learned so much from doing all of this and the research involved.

My appt. is at 7:45 in the morning. Last food at 7:00, usual fasting info I suspect. Haven't done it in a long time but they provide detailed instructions..

Tired. For all of you who are following this..I hope I learn something that will help someone.

Billye

How was MN weather?
 

Dear Billlye:

I live in Minneapolis, MN. How did you find the weather on the road as you went through Minnesota? Hope the storms missed your route. Let us know how things go at the Mayo Clinic.

There is a thin layer of snow on our ground in Minneapolis this morning but nothing more than that in sight. Hope our roads stay snow free for your return.

By the way, we wear clothes in layers here, to keep warm. One can always take off a layer. About three layers of tops does it for me.

Shirley H.

Shirley:

Does it ever get to 75 in Minnesota???

I would go nuts if I had to wear three layers of clothing. I just lost enough weight so I can zip up my winter coat with no problem.
Imagine having to put 3 layers of tops under that coat? I would need to buy a bigger coat AND I'M NOT DOING THAT!!!!!

lol

Melody

Forgot where you live, Mel- but even here on the East Coast-Middle (N.Va/Md/Pa/NJ) we always should buy a winter coat at least one size larger, if not two, to compensate for layers. For me-a long sleeve tee (thermal in Jan/Feb) then a shirt, then a sweater. In Jan/Feb, thermal 'long johns' bottoms under pants is mandatory if you're going to be outside for more than just a trip to -get in the car, go to a mall, and home again. I work outside frequently, all year long and layers are the only way to dress. Coats haveta accomodate. Sorry about your vanity, and happy about pride in losing weight, but winters.......... ya gotta look like a marshmallow to be warm. :>)