Popping in before the offices open up. Earliest neuro consult appt is December 14, but I'm going to hang out and wait for a cancellation (likely as we got several more inches of snow). Then this afternoon is pulmonary test.

Sweat test was weird. I actually slept through most of it as my fatigue is in overdrive. Nothing happened for 30 minutes, then all of a sudden, I began sweating like a maniac and lost an entire pound in the next 15 minutes!

I don't mind the purple dye so much as now I don't look so pale! It did stain pretty badly as my skin is so doggone dry. Too bad I don't dye my hair purple anymore as I would completely match.

We decided against gastro stuff right now as I've had tons of tests in that area already, and my problems are pretty well documented. But I am going to make sure the neuro guys know about the gastroparesis and such so we can figure out the connection.

Looks like they've got the lights on in the neuro waiting room, so I'm off to hurry up and wait.

Today is my husband's 37th birthday, and our 11th wedding anniversary. If I am still somewhat functional after the pulmonary test, we're going to try to have dinner out.

fanfaire

I stayed orange. No purple. I could tell by the technician's look on her face that it was not good. They even left me in extra long to get me to turn purple. They would not tell me how hot they turned it up to, but it was hot. I think they even cranked it up a bit more......No purple. I told them I was aware that it was not good to not turn purple at all. That is 'global anhidrosis'.

Then I got to wear a 'paper bikini' and have my pictures taken. (Thank God I weighed 15 pounds less then). Geez, you don't know whether to smile or not when they take those pictures.

Well, purple is very good. It means your sudomotor function is intact. You sense heat and your nervous system reacts to that stimulus.

I think Rochester got off easy on this last snow storm. We got nailed here....but at least it covers the ice now and we can get traction on the snow. Hopefully, you will have good weather on your return trip.

Oh tell the truth,C you wanted to look hot,no good so you sprayed
yourself with that fake suntan stuff...That's a hoot...What does it mean
if you turn orange???? Sue

that she's an oompa loompa

You are the very best and a joy..heh heh Sue

My dust was orange, and supposed to turn purple. Not turning purple means I either do not sense heat, or I sense it and the connections are not there to make me sweat. That makes me prone to overheating, potentially deadly, which is nice to know as I was into endurance athletics. I never could see the thrill in sunbathing....I just could never do it.

Not turning purple is generally ominous. It is 'global anhidrosis'. It means there is some very significant damage, somewhere, due to something. It is likely the small fiber neuropathy as my biopsy is positive for that, but it could also be a ganglionopathy....what is causing either of those is a mystery and under investigation.

Ironically, if I do move around and not lie still, I will sweat some, I have seen it on my clothing....but I was supposed to sweat.

Interstingly, all my ancestry is northern European, and one quarter of it is from central and northern Sweden, extremely pure, homogeneous, can't get more Swedish, unless it came down from all sides, which fortunately for me it doesn't. I am Swedish enough to count, as the genes we are looking at are dominant, in general.

When I say north, I am talking less than 4 hours daylight maximum at this time of year (some get about 2 hours). It is dusky like. In summer the sun never really sets, it just gets twilighty. It is gone but still light. If you are from way up north, you know the 'gloam'. They also have a high incidence of several genetic diseases up there, and one, interestingly involves a polymorphism involving drug intolerance. I have no solid evidence yet, and it is cutting edge molecular biology and genetic research at this point. They thought they had it all figured out a few years ago, but, it got blown away with the genome mapping getting more sophisticated. It is a hot area of research. It has gotten me very interested in medical genealogy.

My physician advised me to look into this a while ago, but I figured it would not be this helpful. It was.

That is part of my story. Just a part.

And, my lord, the last thing I wanted any one to do was take pics of me in a paper bikini. They do that so they can feed it into a computer and microanalyze for any purple. There was a titch between my toes...that is it.

I had one pic in a swim suit in the last 5 years and it was that long ago....when I still competed, and, it was a competition swimsuit, which, thankfully is like wearing a compression stocking. They are a bear to get into though. Kind of like putting toothpaste into the tube!!

It could mean I am a Neanderthal! Perhaps a Sasquatch---no wait---lost too much hair and never had that much anway. Hey, I'm an elf, or troll, depending on the season!

You know, I would think that the genetics of northern climes would dictate the human to have a ton of hair....instead, Saami, Inuit, and other circumpolar people, tend not to be that hairy. Eye color can't be tied to the sun either, as the indigenous of Scandinavia have blue, green and brown eyes. The Inuits I believe all have brown eyes. If my folks immigrated to that area it was very early, likey before the year 1000, as I have records dating into the 1400's and I believe one church has some into the 1300's but I have to go there to get those...it is in Sidensjo, Vasternorrland. Some branches may be 'indigenous'. I can't really find out, as to do that you need maternal mitochondrial DNA....this is my dad's side, his mother's side. I have only one living female descendant in my family who carries her mitochondrial DNA, except for some in, where else, Minnesota....I would have to locate the female offspring of the female offspring of my grandmother's sisters, which is doable.

It is not as cold up there as you would think....no worse than our midwest as the Atlantic Conveyer Belt in the Ocean, keeps Europe warmer even tho it is farther north.

There are a lot of hereditary diseases, not just the hereditary neuropathies, that have adult onset, past 40's, and have peripheral neuropathy as a component, so we are exploring that possibility. There are far more possibilities than people would expect, many autosomal dominant.

This is more than interesting,only a small amount between your toes.
Has therr been any books written on the hereditary neuropathys and
medical neuropathys. My fingers hurt so trying to do a short cut.

Questions,I'm sure you have answered,
1. How old are you,feel free to ignore any or all.
2. I take it you live in Northern Mn.,if so lack of sun light,do you are other
family members suffer from SAD?? When both my son's lived
lived in Mpls,they both did..Been all relatives my 1 son married
into,but have always lived there never have..I did in Mi. grew up
there,but when I moved to Mo. it changed,my mom used to laugh
and say sun must be closer to the earth. My Aunt and Uncle and
2 of my cousins lived in Hibbing area loved it. bla bla sorry.
3. Have you thought of writing,a book on hereditary and
medical neuropathys??? I would hope so...You said you see sweat
on clothes but do you feel it at all on hands,legs,feet ect. For
instance my hands feel wet to me,but very dry to others..I hope,
this hasn't put you to sleep...Thanks so much Sue Hope we hear
fanfaire,but hope they get out,for there dinner,

Would you like to hear how many physicians looked us in the face and said "Neuropathy is not, has not and could NEVER BE inherited???

I can't even count, there have been so many. In all the 18 years since Alan first got it between his toes.

The only doctor who made any sense was at the very last neuropathy support group Alan and I attended last month.

I was sitting next to her and I said "do you know how many people I have told that Alan's mom had Guillian Barre and every single one said "oh, it can't be connected, you can't inherit Neuropathy". And this darling doctor said "I would never be so (I can't exactly remember the word she used but I know she meant to imply "I could never be so uneducated as to make that statement).

She was the only neurosurgeon I have spoken to that is doing research into the complex causes of neuropathy. And she listened....to everybody.... at that meeting.

I wish more doctors would do that.

Isn't that odd that's been one of the first things i've been asked,by
all the Neuros I've been to. That't why everything C. saids is so
interesting. I guess she's filling in all the things most Dr's don't have
either the time,or perhaps they don't know.Ha But C. is creative and
down right interesting.. And if she has the energy I would love to see
a book... Sue