Oh Bob: you are so funny. It took me to hit the ripe old age of 59 TO GET VAIN ENOUGH TO WANT TO SAY THIN AND NOT LOOK LIKE AN OVERSIZED CHIPMUNK IN THOSE COATS. lol. I live in Brooklyn, NY by the way!!!

When I do go out in front of my house to shovel show, I put on Alan's big old oversize parka, two hats, two pairs of pants. etc.

Why am I not vain then?? Because there is 7 feet of snow in front of my door and who the heck cares. I've got to go to the store and buy my chicken!!!

Not not to worry, when it's cold, I do wear thermals. They do fit under my coat. You have no idea when I first zipped up this coat and it fit, I was elated. It's a London Fog jacket with a hood that I got for $25.00. Think about it, a London Fog something for $25.00. Amazing!!!

Now if I could only find a hat that doesn't squash my already thinning hairdo!!!

Oh the vanity of being a girl!!!!

mel

Hope your first day at the clinic went well - if you arent too tired looking forward to hearing how it went and how you feel about docs you saw etc.... Hoping you are getting restful sleep when you can.... also, any more word on the pups? Hoping they are ok too

Take care.

They made it in one piece... Now, if someone can just help her out, I am sure she will feel the trip was well worth it, even considering the difficulties getting there.

I am not overly familiar with Mayo. Does anyone know if they diagnose and begin treatment and then have you come back, or will they work through your local doctors?

Cathie

First day. Started at 6:00 am in hotel, first appointment at 7:45 but we were early and have been able to get to all appts a little ahead of time. I did not see Dr. Dyck today. They sent me to Dr. Michelle Mauermann today. She is young but so thoughtful and really did a detailed workup. It is very important for you to have a chronological history available to you. My memory had a hard time struggling with some of the questions. And it is also important to have medical historys. I can't even begin to list the tests right now. But have 2 more full days of them including some biopsies that I am dreading.

Mayo doesn't offer the skin biopsies. It seems that Mayo considers them too unreliable and not repeatable to do. They were one of the original forerunners in this test I was told but decided they weren't worth continuing because of the afore mentioned reasons.

So many people, so much illness in one spot, but so many friendly people. And the staff is so nice. Other than my exhaustion right now, not much to complain of. And the cold.....

Silver Swan, the weather we saw on the road in Minn. on the direct route from Texas was cold, windy and some slight sleet.

Gotta stop. Been sitting on this unmentionable most of the day. Can't sit any more.

Billye

God Bless you SilverLady. We are all waiting and watching. Saying prayers and reading. Everyone here is hoping you get the long awaited help you have been searching for.

road weary, now 'test/exam' weary you must be by now! And, imagining how you probably have to recite your medical life's history in less than one minute about 97 times during the course of things! At, least, it's seeming that they are really FOCUSING on your issues and trying to piece together your problem's puzzle into some coherent picture. I sure hope that will be so.

A couple of months ago, I got into various insurance company's diagnostiic protocols for neuropathies, especially those for PN and I was surprised that they'd come to the same conclusion as the Mayo about skin & nerve biopsies. Practice now seems to be TEST ALL ELSE and if they indicate it as PN treat as PN. The variables of how the biopsies are taken, handled and read are too great vs. the possible damages to biopsy sites to truly aid in a viable diagnosis. It concurs with what all I'd read about biopsies when one neuro told me I HAD TO HAVE A FULL SEURAL BIOPSY. Well thanks to all the folks here, and all that reading...I firmly and politely declined. I have no regrets.

You mention so many sick but friendly people--maybe it's because there might be a heap of HOPE around the corner? I am heaping HEAPS OF HOPE your way - that the gurus will be able to offer treatments that HELP and ease at least a bit of your pains.

Maybe some silly imagery--picture me, and others as funky helium balloons hovering around you as you're wheeled from test to test, doc to doc. Sort of bumping into you and each other along the way. Chuckles mite occur as you assign each of us a color!? It's a large bunch of balloons!

Soft, warm hugs for the meantime - j

I would like to be the purple balloon - my favorite color. What a grand idea, dahlek!

Billye, my wishes for you are the same as everyone else's. What a trip to take and then not even a day for rest, but right into the testing. We drove from northern Ohio to southern Florida last winter, and while I am not sure of any mileage difference, I cannot begin to imagine going that distance lying down. I give you so much credit for even trying this. I suppose in the end all of us will try just about anything to ease/get rid of our pain and find the reasons for it.

I can't remember if you said how long you will be there

the purple balloon
Diana

--which are NOT nerve biopsies.

The utility of the skin biopsy is to look for signs of samll-fiber nerve damage in the absence of other definitive signs of neuropathy. While it almost never points to a cause, it may be the ONLY test that documents nerve damage in those with predominantly small-fiber syndromes (often characterized by symptoms of burning pain and/or numbness); damage will not show up for these people through other testing, particularly not through nerve conduction/EMG studies, which can only measure larger, myelinated nerves that may well be intact.

While there is some dispute as to what constitutes an "abnormal" intraepidermal nerve fiber density from skin biopsy, the test is still useful to document what shape the nerves are in--are they swollen, overbranching, etc.--and this can be used along with density figures to confirm a small-fiber diagnosis. This is particularly useful in those with painful symptoms who are otherwise exhibiting "normal" or "negative" results on most/all other testing. And I can speak from personal experience it can then stymie those doctors who are thinking your symptoms have no physcial basis (and I'm putting that kindly).

It is true that the analysis of the nerve tissue requires expensive electron microscopy that may not be available everywhere, and trained pathologists to examine samples. I suspect that the lack of these factors may sway many facilites to not perfrom the test.

The test is far less invasive than a nerve biopsy and much safer, and has the advantage of being reproducable--very useful to track one's condition over time. Even if there uncertainty about exactly what nerve density level consitutes "abnomality", I'd say comparitive drops in density level in a given individual indicates a neuropathy, whatever, the "starting" level. And, as in my case, a statistically significant uptick in density level indicates a condition that occurred int he past (and may have been monophasic if there's a good amount of regeneration).

I'm sorry they won't be performing that test for you, Billye. I'd love to see the literature that supports their viewpoint. (I can access plenty. much of it through the Treihaft article in our Useful Websites at board-top here, that supports the opposite viewpoint.)

don't even know where to start. Saw the eye doc, rheumatologist, had sweat test, lumbar puncture and had the autonomic testing. Eye doctor was unable to give me any futher help. I had already searched out the help he suggested and was following it. He said he wished he had a silver bullet, so do I..

The rheumatologist was less than helpful, but my sed rate, and all the autoimmune factors looked good. So we are controlling most of the arthritis symptoms. He did not want to advise any futher autoimmune medications unless something in the neuro testing suggested the Sjogrens is what is destroying me. Will know more later..

The GI specialist is running a lot of nasty tests and actually thinks she may know what is wrong with the bowel issues. Can't remember the name of it, so tired..but it basically means something in the pelvic region is wrong and the bowel isn't receiving the signals it needs. Lots of testing still to come. She added two more days here to the schedule.

So, we have gone from a possible 2-3 days to actually being scheduled thru Thursday of next week. So it means about a two week trip unless they come up with more stuff. Will have to hock the farm when we get home.

Dalek,
I'm going to take your bouquet of balloons with me thru all of this testing except the bowel stuff. I'm bashful. See some spirit left.

Love to all,
Billye

Hi Billye,

Good to see you are posting and getting thru all your tests.... can't believe you had all that in one day.... sounds like they are doing a really thorough workup - talk about being pinched, poked, and prodded!

How are you holding up physcially? Getting sleep and getting around the clinic ok? As the patient do they really help you get from a to b etc?

Bowel testing is not fun - hey - at least its at the end of your visit (no pun intended) - will be interested to see what type of tests they will be doing to see if your intestines are working....

Take care,