Fanfaire?
 

Golly this sounds like Silverlady's adventures , last year? Year before?
The weather seems to be cooperating [not] as always. I for one, just want you to know I am thinking and praying for not only a safe trip but a GOOD medical experience! I know you probably won't be able to read this until later, but I don't think I'm alone as you go thru such travels asking yourself: WHY am I doing this? Someone, please remind me! Sending as many warm soft, cyber fuzzies as I can muster to you to help along the way - j
:hug:

Oh my gosh, remembering..
 

This is so very like my own experience. I am so amazed that we are so much alike. Seronegative Sjogren's. I so hope they get all her problems ironed out and find out what is really wrong with her. I for one believe she is seronegative for Sjogren's. Believe me when I say this disease can cause disaster in your life.

I'm praying for a safe journey for you Fanfaire. I hope you will at some point be able to correspond with us. I know you don't have a lap top and you are
at this moment I'm sure doing all kinds of nasty preps for the tests tomorrow. I wish you fortitude. It was so very hard and difficult to get thru. Prayers your way from me are coming.

But at the time we were struggling and spending all day in Mayo, we'd come out to get in the shuttle after dark and we watched Rochester come alive for Christmas. There was a light snow and lights. It felt like Christmas even tho we were so far from home. Another world so far away. Many many good wishes and hope for you.

Billye

Wow, thanks for these posts! I haven't left yet, but will Sunday morning. Silly me, I got all concerned about the Rochester forecast and forgot to check Sioux Falls, and sure enough, we're supposed to get six inches of snow tomorrow! :rolleyes:

I start fasting Sunday night, a 12 hour one. I may have to do other fasts if they refer me to gastroenterology, which might be a practical thing to do considering my history of gastroparesis. I may have to do other digestive tests which I choose not to think about at this time. :D

I think if I'm up to it my husband and I will at some point do a driving tour of Rochester at night to look at holiday decor. That's one of our fave things to do in December, no matter where we are. And my husband is hoping there will be Christmas movies on cable. :D

You both have been through so much! I really appreciate your support. Actually, that goes for everyone here.

fanfaire
:cool:

I am about 3 hours east of Rochester MN, it is wicked tonight, has been since 10am...the new 'winter hurricane', wind, snow, pellets and freezing rain is the new kind of 'blizzard' we get. (I am waiting for thunder...they said that may happen too). I prefer the old snow and wind kind of blizzard, to this new freezing rain kind (call me a gnome). I have never heard a house make these kinds of noises, and I have lived in the Great Lakes region my whole long life. I hope it improves tomorrow, I think it will. It seems to be moving faster than predicted and I think the ice will stay south of Rochester, which is good. Snow is drive-able...ice is not.

Good luck, stay safe, wish for the best.

I will be undergoing some very invasive diagnostics in the next 6 weeks and I am apprehensive. I understand the uncertainty and difficulty of it all.

I will be thinking of you and hoping you have a safe trip and that the clinic will help determine what is wrong and even better, what can be done to give you some relief.

I am a little jealous of the snowfalls you all are describing. I haven't really seen much snow in many years. Every Christmas seems to be missing something...

Have a safe journey and let us as soon as possible what you are able to find out. We will all be waiting anxiously to hear.

Cathie

All is quiet in the midwest, and I would think roads are clear by now. Our crews are usually very good at getting these messes cleaned up. I remember blizzards when I worked for the county as a nurse. I used to call the county crew to find out when they were going to plow a certain rural road, so I could follow them to my home from work. That was back in the early 80's when we still had huge blizzards that would shut us down for days, despite plows that had 12 foot high blades. I always liked it when they pulled out those huge plows. One year, I believe it was early 1978, a woman went into labor and they called one of those plows to get her to the hospital and it got stuck and she ended up delivering the baby in a farm house. It was kind of boring to stay home and yes, I had a child the following fall! A blizzard baby. There were quite a few born around late September, early October, who had their beginnings in the blizzard that year. We had no internet or computer games to keep us busy. Soap operas only kept you entertained for so long. Yep, those were the days.

Now we get more ice. We still get snow storms but they do not reach those proportions. The news channels makes them seem worse than they are.

Ice is far more fearsome.

Also back in the early 80's, a -60 was recorded not far from here, and that was actual temperature. We had one year when it was ranging from -20 to
-30 plus windchills in the -80 range. I lost headlights driving to my night shift job in that. Every one was driving around with a headlight out. I think the cold just cracked them. We don't get this kind of weather anymore. I guess that is fine for us, but it makes me wonder about climate change. It is noticably warmer and we have over the last few years gotten much less precipitation. Those old Great Lakes are not as full as they used to be.

One thing that has not changed is we only get one third of the possible days of sun. That is not a fun thing. Winter is dark AND dreary.

I have a question about weather, and how it impacts my body.

Yesterday was the worst pain day of my life. And I'm 60 and I'm telling you, I wanted to punch my own head yesterday. I don't take any pain meds, because I've been able to go about my daily life (with degenerative joint disease and diabetic neuropathy) and deal with the pain.

I used to use a cane (15 years ago), because I was so overweight, my knees could not support me. But I lost all the weight. I exercised. But I still have the degenerative joint disease. I never goes away. As the doctor once tried to drum it into my brain. "Melody, you have degenerative joint disease", hence the word degenerative. You might slow it down, but your joints will degenerate.

Then I got neuropathy. I do the Methyl B-12 thing and honestly, I don't even notice the PN.

Except for yesterday. Yesterday, (the weather went nuts, and went from the 40's to 26) and it snowed during the night.

I have no idea what the heck happened to my body but even my teeth hurt. EVERYTHING HURT. My shoulder, my left wrist, my right knee, and my teeth. And my feet buzzed.

Imagine, having your right wrist throbbing, your knee throbbing and one or two teeth throbbing (all at the same time). Makes no sense. All in sync with each other.

I took 3 (200) ibuprofen, and all that did was give me an upset tummy. I don't have any other type of meds in the house and I have to be forced to even take the ibuprofen. I don't take pain meds. I deal with it. I only get pain when it's cold or humid.

Let's say it was August, and it was 95 degrees outside with no humidity. I would not have anything throbbing, my teeth would be fine, my wrist would be fine, my knee would be fine. Everything would be fine.

But let the weather go from 40's to 20's in the space of a few hours, and my whole body goes through this metamorphasis, well, I don't know how else to explain it.

I have a friend who is 57 years old. Want to know what she told me last night. "My teeth hurt". She said: "I know if my whole mouth hurts, it's my allergies, it's just not a toothache." She takes a pain pill and when the temperature evens out, she's fine.

What the heck does the weather have to with my knee, wrist and teeth aching at the same time.

Oh, the pain in the front of my mouth went away today. Now it's my right knee and the teeth on the left side of my mouth. Some days, (and this is a good one), when my right knee throbs (this is the bad knee), well the back of my mouth (where I don't have any teeth at all), well it acts like I have a tooth ache. And it's only when the weather is nuts.

I'm perfect fine during the summer months.

This thing with the back teeth started to happen 12 years ago. I went to the dentist screaming "Pull out this tooth". He took an x-ray and said "there's nothing wrong with this tooth, I'm not pulling out any healthy tooth. So that tooth is still there, and god forbid the weather goes nuts, the tooth throbs.

One dentist said 'It's inflammation". So what do I have?? Inflammation of the right knee, the wrist, the back of my teeth, (all at the same time???).

Yesterday, I wanted to punch somebody. But last night I was fine. Went to bed (didn't take anything). Slept just fine.

Early today, it started to snow, I went out to make a wash. The snow changed to rain, (which means it was humid), and all of a sudden, my right wrist and right knee (and a bit with the tooth), well everything throbbed.

Right now, I'm just having a bit of a problem with a wrist. But nothing else is throbbing.

Is this what becoming 60 years old and having degenerative joint disease does to a person's body. The WHOLE body goes nuts????.

I won't take ibuprofen unless I HAVE TO!!! I know what it does to the liver.

So I just put ice on whatever is throbbing and I wait for the weather to normalize. Once it stays a certain temperature, I'm just fine.

I can't wait for the spring to come back.

But these 40 degree changing to 26 degree days are absolutely going to do me in.

I wish I was 30 again.

melody

Weather changes
 

Hi Melody:

I can tell a couple or so days ahead of time when the weather is going to change. I remember hearing, when I was young, old people saying they could feel the weather in their bones. Cold weather, humid, barometer going up or down! It all affects me. Some of us are weather sensitive. I am older than you are but it happens at all ages I guess.

Does a heating pad help you? It does me. But we all are different.

Shirley H.

Heathing Pad!!!

Shirley: Yesterday, I wanted to commit murder, and anything else I could get away with. I never even thought of a heating pad because the heating pad would have had to be the size of my body. And anyway, doesn't heat, well, isn't heat BAD for inflammation?? I thought ice is the way to go.

Last night, during all the throbbing (teeth, knee, left shoulder, etc.) my temple started to throb. Now I never get headaches, NEVER!! Well, last night I got a headache. I put the ice pack on the right side of my head (I was on the phone with my friend and she was telling me about how her teeth hurt!!! Our teeth always hurt at the same time.

Oh, 10 minutes ago, the teeth on the left upper side of my head started to hurt. Went away in a few minutes. I'm fine right now.

Makes no sense. Right now. Nothing hurts. I just ate a salad.

I'm beginning to think I'm losing my mind. I mean, I hate the holidays, but really?? is my mind betraying my body??? Is my mind so unhappy, that I'm developing major flare-ups all over my body???

And it's only with the weather. I swear to god, if it was 99 degrees outside, I could walk 20 blocks and be just fine. I DO NOT LIKE COLD WEATHER, SNOW, HUMIDITY, RAIN, WHATEVER.

I need Arizona, or the Sahara Desert!!!

Mel

The low pressure systems that dominate the upper tier states in winter are brutal. The barometric pressure drops and it does have an effect on pain. There is even a weather based pain index on TV now and then. I am not sure if it is on the weather channel or not...can't remember.

They do make a 'heated throw' that costs about $30. There are also heated mattress pads. I have one of those and a heating pad. You have to be careful with neuropathy, as you may not feel the heat and people with neuropathy can get burned due to that.

Nothing gets rid of the pain from the weather systems. Living in a place live Colorado front range or New Mexico area, where it is sunny, not too hot, seems like a good place to be. Some PNers don't sweat to heat....I think Florida or hurricane prone area would be bad, as hurricanes are huge low pressure systems. I feel quite good when I visit Colorado, any time of year, but I stay at around 5,000-6000ft. Around 8,000 I get goofy and over 10,000 I am downright unreliable. My first clue of something wrong autonomically was probably when I fainted or something without any advance warning, at 6,000 ft in the Black Hills. One minute I was talking the next I was on the ground. That fast. No warning. One bad thing about Colorado, I never end up staying long enough to get my body fluids balanced....always drinking and voiding! I would love to spend a month out there. I wish I could adapt to altitude for once and see how it really feels.

Think dry but not too dry (if your eyes dry out as mine do, or you itch like I do....it has to not be 'too dry'. Think warm, but not too hot, as your body, if you get AN doesn't sense heat and your sudomoter (sweat gland innervation) could be shot, as is mine.

I likely won't move, as that takes money and huge changes that are not easy to make at this age. We moved 100 miles south recently, back to our 'old' town where my kids were all born and spent most of their school years, and even that move was incredibly hard. The only way I would move would be if one of my kids lived right near me, and they assist me. Otherwise....I am staying put, despite the crummy winter weather.

Summer here is wonderful. We are only a few weeks away from solstice, and the light will start to increase again.

I only wish I was as resilient and adaptable as the young woman in the link I submitted on courage and resilence. Alas, I am 25 years older than she, and can't match her in courage, reslience, enthusiasm....never the less she is an inspiration.

sounds like you need to wrap yourself in an electric blanket melody. :hug:


fanfair, i hope all is going well. sending you lots of good thoughts and prayers. :hug:

Melody warm up with
 

'sunbeam warming throws' Sites as follows:
http://www.sunbeambedding.com/produc...x?ProductID=33
And
http://www.walmart.com/catalog/produ...uct_id=6371080
I've had one for about 3+ years now, and It's living on my LR chair, keeping me and the surrounding air warm constantly.. I've the kind that doesn't have an auto-shut.off, but that is me? and my preferences. IF you are in a chair, a throw kind of thing is far better than the extra bulk of a blanket...only negative is the 'cord and the plug' it all requires. I find I am often more comfy and toasty in the chair than in bed.

BACK TO FANFAIRE? I truly hope, if you can read this...that you have been on my mind and in my heart during your travels today! That there were no disasters or even 'near' ones? [KNOCK WOOD QUICKLY here?] And that you are gonna be ready to do DOCTORS! Lots of them tomorrow!!!! Good thoughts and hopes for the 'duration'. Get thru it all and be proud you have DONE MAYO!? Sure wish this was more than it is -:hug:'s ? - j

Me as well C
 

Thank you for that and what a insperation indeed. My 30 yr old son
has shingles,called and wanted to know how we all managed from
day to day.

I started to read Neurotalk when Billye went to Mayo,,I to thought
how will she ever make it..She decribed the weather changes,
the effects of weater change and pain..Boredom and pain..But the
help so many people from here rooting her on from all over,,it was
amazing..I knew no one,I had just come across all of you and what
a blesssing..I just sat and read and yes at times prayed,if they needed
directions,there would be someone there with directions..

I was and still am so proud of this Neurotalk family,all of you so
kind,when someone needs it,so patient went someone cries,sit
back and help when someone vents,but for so many others,
you put aside you pain to embrace others pain..He asked and that
was just the easy way to answer,because believe me I could gone
on for days...Be brave for all of us Fanfaire,and you will be in many
hearts and prayers..All the rest on the Neurotalk,you have helped
me and Bob ,make it through many bad days and nights..You have
turned our tears to laughter. Bless you all,hugs Sue

To Sue and Fanfaire
 

Sue,
It truly was a blessing to have this group when I went to Mayo a year ago. I was in constant unrelenting pain. Tests for 8 hours. Struggle for the entire week and a half. I lived to hear from this group here at Neuro Talk. It was the first thing I did when I got back to the hotel room. My husband and I had no contact with family. But we did have my family here. And Liza Jane's chocolates. All my friends, Melody and Dahlek and the Balloon bouquet. When I struggled to get thru the pain, I'd think of the balloons. Everything was so unfamiliar and stressful for me. I'm not a traveler. But with the support of everyone here, I was armed and ready for everything. You will all never know the blessing you were and how dear you all are to me.

Fanfaire,
I"m sending that same balloon to watch over you. Dahlek can you post it for us again? I want to be the orange balloon floating over Fanfaire giving her all the strength and energy I have. I'm so praying they got thru the roads safely. I just got an email from my sister-in-law in DeMoines Iowa. Terrible road conditions. I'll say an extra prayer tonight.

Hugs and strength :hug:
Billye

OH MY! Billye?
 

You are gonna have me do a dogs body of searching for that...but gimme until tomorrow and I'll probably find the right 'spot'?
I do recall that it was sort of like this?: Consider us a bunch of nosy, boinky, helium balloons, hovering over you...listening to every word said...going HUH? What'd HE say? She Say?-etc.DID THAT DOC REALLY SAY THAT? Really NO?.. Essentially being nosey parkers, but not of the 'church lady' type [pardon to some here?- just not trying to be intrusive..I mean] Really wanting to KNOW all that's going on and give you OUR take while it's happening.. Also, as you are going from room-to-room-wing-to-wing, we just go along with you...boinking thru the doors and along into people's heads as you are trundled to and fro.. all the while jabbering at each other, getting off track just like we do here! Hopefully, none of us 'bursting'?
Me? I guess I wanna be a small, silvery and super head boinkey type to all the docs who arent' saying what YOU WANT! I promise some strange breeze will come along and thwonk them in-between the eyes! Yeppers, that's gonna be ME!
Is that what you meant? Well, Fanfaire...I'm boinking over or near you...in spirit at least... got that? WARM hugs and all that... - j
Here have a :holysheep: It should keep you warm and cover a lot of bases? I have the utmost respect for sheep, and their wool! Especially at times like these? BURRRR.

Well, since I control the thermostat in this house, I am not cold, never cold, and I don't need throws or electric blankets. When I say my body doesn't like the cold, I don't mean I'm cold, I mean, the temp outside (no matter that it's toasty warm inside my apartment), well whenever the weather changes dramatically, like it's been doing, well my whole body goes crazy.

Two days ago, was the prime example. I wanted to commit murder. My whole body was killing me (including my teeth), which baffles me, but then again, it happens to my girlfriend who lives in NJ. Our teeth hurt us at the same time.

She has severe allergies. Yesterday it snowed in the morning, and it was freezing. Then it changed to rain, and all the snow disappeared. This morning, it's all sunny and beautiful BUT because of the change between yesterday and today, my right knee is throbbing as is my upper teeth. I was fine yesterday though. Last night, I was just fine. Went to bed just fine (no meds or anything). I'm not one to take any meds unless I'm dying.

So my body is all about the barometer.

God I hope it either stays 40, or stays 20. But that it doesn't keep flip-flopping.

The odd thing is when it rains, Alan is in heaven and I'm going crazy.

What a contrary thing, this arthritis is.

See, my PN is under control due to good sugar control and my Methyl B-12.

I only wish that my body would cooperate when the weather changes.

I wish I had the moola to move to Arizona where the sun shines 360 days a year.

And I had to laugh when someone suggested an electric blanket. I'm walking around in shorts in my house all the time. And a tee shirt.

Believe me, I don't need an electric blanket.

lol

Mel

Melody, I DO understand the barometer stuff,
 

But that is secondary to my other issues...I is a 'thing' that just comes with the territory. Had it all long before I came down with the neuro issues. And yes, it drives one nuts...but, compared to other stuff, it's really little stuff.

AS for FANFAIRE? I sure wish we could get some sort of word back from her. I realize that it's all gonna be INTENSE, frenetic and cold? But at the same time, I'd like to know that Fanfaire is THERE and safe and getting the tests! That should be foremost in our hearts and minds... for now. - j

will this do for now?

http://th17.photobucket.com/albums/b...1267331789.jpg

:hug:

Good one Curious
 

I think I know where the balloon bouquet is, it's in my Mayo saga. But I have no idea how to get them here. And it would be my bouquet. This one will be Fanfaire's and I want the orange one. I want her to feel sunshine and warmth around her.:) Maybe we will hear something soon.

Billye

best smileys...
 

remember the website with the linkable graphics?

http://bestsmileys.com/birthday1/10.gif

or

http://bestsmileys.com/ballons/4.gif

http://bestsmileys.com/ballons/8.gif

http://bestsmileys.com/ballons/2.gif

http://bestsmileys.com/ballons/

I like the little one at the bottom, myself.

http://re3.mm-a4.yimg.com/image/2845021727

http://re3.mm-a3.yimg.com/image/2552212939 http://re3.mm-a8.yimg.com/image/4128007733

lol :hug:

Wonderful!! Wonderful!!
 

Those are great balloons!! All of us hovering around her to give her our support and love!! Keep them in your mind whenever you are suffering there. We're there.

Billye

Hi! I'm alive! My husband is watching me type this, so say hi to him too! :D

Weather was semi-rotten. Ice was bad enough, but the WIND! Ack! We passed lots of flipped and crashed vehicles on the way to Rochester.

Saw Dr. Osborn in rheumatology yesterday. He's nice and has a SENSE OF HUMOR! He got me started with bloodwork and stuff.

He said something seemed a bit off with my heart, so I did some scans yesterday. I'm going to do some pulmonary stuff too tomorrow. But today, it's the neuro adventure.

Did the EMG this morning. OUCH, as you all know. But it didn't hurt nearly as much today as the one I had three years ago. :confused:

Am about to go do a sweat test, so need to run. Will do neuro consult if I can tomorrow, and will try to see the ENT maybe Thursday, if more tests aren't added by the neuro guys.

Thanks for all the posts! It was cool to get to read them. Will pop in again if I get another chance to use the Mayo computers.

fanfaire
:cool:

WOWs all around!
 

Wow that you got there safely....Hi good Husband!
Wow that you are really getting the once over!
Wow that there is another doc with a sense of humor to add to the lists!

Wows to everyone who has come up with those GREAT balloons!

Fanfaire, keep up your strength [hard to do I bet] and know that all those balloons mite help hold you up? Hugs - j

If it is the same sweat test I had (thermoregulatory sweat test) or roasting you in a box test.....hope that Fanfaire turns purple!! (That sounds bad, but it is actually good.)

I just do not understand why every one hates our weather...sometimes it is good not being able to walk to your mailbox without skating. No news is sometimes good news...I let the mail sit for a few days. It is kind of funny to watch my 90 lb. dog slide outside when I let him out..........this weather has its benefits (not).

(It is snowing again, so hopefully the snow, covered with ice, will become snow again and we will have some traction.

Where did you get that great big yellow sun balloon. I love it!!!

Mel

Oh my, Fanfaire is getting the works....an Alberta Clipper is hitting us with 3 to 5 inches and arctic blast. I assume Rochester is in the same path, but you never know. At least it will give us some traction on the ice. Rochester probably didn't get the ice we got....they just may get a pile on of more snow. Expressway driving is down to 35 mph here.

The yellow balloon reminds me of summer. Ahhhh..........I will turn on my heating pad....cover up with 2 quilts and pretend I am at the beach. I am in a bit of a funk over my testing coming up, (scared, nervous, the works)....so I am not upset about 'holing up' in the house in the bad weather. It suits my mood.

Turning purple in a box
 

Yes,
That's the same sweat test they did on me last Dec. You can look it up on line to see what they are like. Fanfaire, Be prepared to have purple hands, knees, feet, etc. Anywhere the skin is dry it will stick more. My hands were purple for days as were my feet and the sides of my body where I couldn't reach to scrub. Underarms were purple. It just has to wear off. And you will see lots of people at Mayo with purple hands and feet (if they are exposed). They are pretty common. I wish I'd know she were going thru this, I'd have had some hints for the eyes. The box is so hot and dry.

Also,
be sure someone sends you to a Gastro. You have problems and if it's Sjogren's and neuropathy, you are likely to have more. This all needs to be documented.

Good luck to your husband. I know the weather is so bad.

Billye

I liked being purple,I thought purple hands were interesting...Keep them
busy,and Hi hubby!!!!Hugs Sue

So glad to hear from you Fanfaire and that you and hubby made it without landing in a ditch... Hello hubby... Welcome to our group! I wasn't sure you all would have access to computers up there.

I like your snow, but we never get anything like that in Texas, maybe a little snow, but nothing like you are describing... People here would freak out. You all would laugh at the closings we get when we get even a light dusting of snow...

I don't know anything about this sweat test, but if it makes you hot, doesn't that make the neuropathy burn? Purple sweat???

Cathie

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! :eek:

I don't mind the purple dye so much as now I don't look so pale! :D 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. :D:D:D

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. :D If I am still somewhat functional after the pulmonary test, we're going to try to have dinner out.

fanfaire
:cool:

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

:eek: that she's an oompa loompa http://re3.mm-a6.yimg.com/image/3397438806


:D

Curious
 

You are the very best and a joy..heh heh :hug::hug: 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). :eek: 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.:confused:

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!!:D

It could mean I am a Neanderthal!:D 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!:D

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.

C.
 

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.

Mel
 

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