Hi All. Thanks.

[Guest guest]

Hi All. I just wanted to say a note of thanks.

I am new to this site. Diagnosed with autonomic neuropathy at Mayo

in April (actually with another form or two of neuropathy earlier in

Tulsa).

While understandably hesitant to accept the label of MSA or Shy-

Drager, my internist and I both realize that the symptoms do fit, as

do the tests I've had to date. In fact, I am constantly amazed at

how my symptoms correspond with posts on this site.

I just wanted to thank you all for being there. Especially the

family members who persist in writing.

I also wanted to thank whoever is responsible for establishing this

site. And Pam for sending me over here.

I wanted to thank each of you for the words of encouragement I've

seen you give those who've written.

I will likely be writing much more. I have volumes of

questions... But for tonight, I'll limit it to the brief intro,

and thanks.

- from Grove, Okie-la-homie

[Guest guest]

a,

Remember to breath! This list provides a wealth of information as well as

support. Take one day at a time and ask whatever comes to mind. Know that

every person's symptoms are different so you may not ever encounter some of

what is talked about. I for one, will never have use of a condom catheter.

Keep the sense of humor too!

Hugs,

Deborah aka Tenacity

Hi All. I just wanted to say a note of thanks.

I am new to this site. Diagnosed with autonomic neuropathy at Mayo

in April (actually with another form or two of neuropathy earlier in

Tulsa).

While understandably hesitant to accept the label of MSA or Shy-

Drager, my internist and I both realize that the symptoms do fit, as

do the tests I've had to date. In fact, I am constantly amazed at

how my symptoms correspond with posts on this site.

I just wanted to thank you all for being there. Especially the

family members who persist in writing.

I also wanted to thank whoever is responsible for establishing this

site. And Pam for sending me over here.

I wanted to thank each of you for the words of encouragement I've

seen you give those who've written.

I will likely be writing much more. I have volumes of

questions... But for tonight, I'll limit it to the brief intro,

and thanks.

- from Grove, Okie-la-homie

If you do not wish to belong to shydrager, you may

unsubscribe by sending a blank email to

shydrager-unsubscribe

[Guest guest]

HI DEBORAH (TENACITY).

I TOO AM TENACIOUS.

I TOO HAVE A SENSE OF HUMOR.

ONLY WAY TO FACE THE WORLD.

BEEN GONE FOR OVER A DAY. BAD TIME - (BODY FIGHTING ME - AND I LET

IT WIN - FOR A WHILE

THANKS FOR THE WELCOME. I DON'T EXPECT TO HAVE A 'PERFECT MATCH' OR

ANYTHING. I JUST HOPE TO FIND SOME ANSWERS, SOME SIMILARLITIES. MY

INTERNIST AND I ARE SEARCHING TOGETHER (THOUGH SHE ALREADY KNOWS MORE

THAN I FIGURED SHE WOULD).

BY THE WAY... MY NAME IS 'PULA' - WHICH OCCURRED ALMOST 20 YEARS AGO

WHEN SOMEONE MISSPELLED MY NAME IN COLLEGE - IT STUCK. PRONOUNCED -

POO-LA. MY REAL NAME IS PAUL NOT PAULA.

CATCHA LATER. PERHAPS EVEN IN DENVER IF YOU GO.

PAUL AKA PULA

[Guest guest]

Pula,

Keep on fighting. This group is a wonderful, diverse one with lots of

good advice. We won't be in Denver as we are having a " get together " here

in NC on July 27th.

Hugs,

Deborah

HI DEBORAH (TENACITY).

I TOO AM TENACIOUS.

I TOO HAVE A SENSE OF HUMOR.

ONLY WAY TO FACE THE WORLD.

BEEN GONE FOR OVER A DAY. BAD TIME - (BODY FIGHTING ME - AND I LET

IT WIN - FOR A WHILE

THANKS FOR THE WELCOME. I DON'T EXPECT TO HAVE A 'PERFECT MATCH' OR

ANYTHING. I JUST HOPE TO FIND SOME ANSWERS, SOME SIMILARLITIES. MY

INTERNIST AND I ARE SEARCHING TOGETHER (THOUGH SHE ALREADY KNOWS MORE

THAN I FIGURED SHE WOULD).

BY THE WAY... MY NAME IS 'PULA' - WHICH OCCURRED ALMOST 20 YEARS AGO

WHEN SOMEONE MISSPELLED MY NAME IN COLLEGE - IT STUCK. PRONOUNCED -

POO-LA. MY REAL NAME IS PAUL NOT PAULA.

CATCHA LATER. PERHAPS EVEN IN DENVER IF YOU GO.

PAUL AKA PULA

If you do not wish to belong to shydrager, you may

unsubscribe by sending a blank email to

shydrager-unsubscribe

[Guest guest]

Hi I just read your message and noticed you were living in Grove Oklahoma. Where is that in reference to Tulsa??? I live 10 miles south of Tulsa. I also was diagnosed with Shy Drager and/or MSA one year ago. I just found this group a month or less ago and it has been so very wonderful. I felt so alone for the first year because no one even heard of my disease. I have learned soooooooooooooo much from this group and I am grateful to finally have found this place. Then in addition to all the knowledge there is also the support and encoragement. I had my name removed temporarily off the group list until next week. We are goning to Salt Lake City for our grandsons 6th b-day and for the 4th of July weekend. Not to mention that my email box is so full I can't get anymore mail anyways, I am going to work on erasing everything tonight and tomorow so it will be cleaned out when I get back from SLC. I wonder how others keep up with so many emails. I'm curious and excited to hear from you since you live so close. What is your neurologist's name that you saw in Tulsa and what is your internists name and where is he located? I'm interested to know more about you and your MSA srory. I'm off the main list until next week so if you write me sooner you can send it to greercj@.... I'll only be here until Tuesday July 2nd to answer or read emails so if you can write back tomorrow Monday I probably will have time to read it and respond before I go. Otherwise I will have to be patient to hear from you until I get back oh the 8th of July. I have to go to bed now. I'm so tired my body is leaning to the left and I can hardly sit up by myself wen I am so week and tired. Bye Connie

I am new to this site. Diagnosed with autonomic neuropathy at Mayo in April (actually with another form or two of neuropathy earlier in Tulsa).While understandably hesitant to accept the label of MSA or Shy-Drager, my internist and I both realize that the symptoms do fit, as do the tests I've had to date. In fact, I am constantly amazed at how my symptoms correspond with posts on this site.I just wanted to thank you all for bnbsp there. Especially the family members whnbsprsist in writing.Inbspo nbsped to thank whonbsp is responsiblnbspr establishing thencouragement Anbspamnbsp sending me over here.I wannbspto thank each of you for the wornbspf encournbspent Iare I will likely be writing much more. I have volumes of questions... But for tonight, I'll limitnbspto the brief inneurologis's thanknbspR>unsubscribe by sending a blank email to shydrager-unsubscribe

[Guest guest]

Hi

HI CONNIE.

I just read your message and noticed you were living in Grove

Oklahoma. Where is that in reference to Tulsa??? I live 10 miles

south of Tulsa.

GROVE, OKLAHOMA IS LOCATED ON GRAND LAKE - TO THE NE OF TULSA. IN

FACT, WE LIVE ABOUT AS FAR NE IN OK AS YOU CAN GET AND STILL BE IN OK.

I COME TO TULSA OFTEN - AT LEAST ONCE PER MONTH, SO PERHAPS WE CAN

MEET SOME TIME DOWN THERE? I'M DUE THERE TUESDAY, BUT YOU'RE LEAVING

THEN, SO PROBABLY NOT A GOOD TIME TO MEET. PLUS, IF YOU'RE LIKE ME,

YOU'LL WANT TO VISIT MORE THAN TIME WILL ALLOW.

I also was diagnosed with Shy Drager and/or MSA one year ago.

ACTUALLY, I HAVE NOT FORMALLY BEEN DIAGNOSED WITH MSA YET. MY

INTERNIST IS LEANING THAT WAY. GUESS IT ACTUALLY MEANS SHE STRONGLY

SUSPECTS IT, AS SHE HAS NEVER REALLY GONE FOR THE POSSIBILITY

OF 'LUPUS' EVEN THOUGH I HAVE NEARLY ALL SYMPTOMS OF THAT AS WELL

(JUST NO POSITIVE ANA). YET, AT THE FIRST SUGGESTION OF THIS, SHE

WAS MORE WILLING TO BLAME MY PROBLEMS ON MSA THAN FIBROMYALGIA! LIKE

I SAID, I'M JUST SLOW TO WANT TO ACCEPT SUCH A DIAGNOSIS.

I just found this group a month or less ago and it has been so very

wonderful.

I FEEL THE SAME WAY.

I felt so alone for the first year because no one even heard of my

disease.

WELL, AS YOU'LL FIND OUT WHEN WE SHARE STORIES, YOU'RE CERTAINLY NOT

ALONE THERE - AS NONE OF THE DOCS IN TULSA HAD A CLUE AS TO WHAT I

HAD/HAVE.

I have learned soooooooooooooo much from this group

ME TOO - AND I'VE ONLY BEEN AROUND A SHORT WHILE.

and I am grateful to finally have found this place.

DITTO. THIS GROUP IS A GREAT BLESSING!

Then in addition to all the knowledge there is also the support and

encoragement. I had my name removed temporarily off the group

list until next week. We are goning to Salt Lake City for our

grandsons 6th b-day and for the 4th of July weekend.

TOO BAD YOU'RE GOING THEN... IF YOU WENT AT THE END OF THE MONTH,

YOU COULD GO TO THE DENVER CONFERENCE. ARE YOU PLANNING ON GOING?

WE ARE. HAD PLANNED ON GOING TO DC FOR NDRF SEMINAR, BUT GOT TOO

PRICEY. WE'LL BE ABLE TO HAVE A VACATION AND LEARN ABOUT THE DISEASE

AND FELLOWSHIP WITH OTHERS. FAR BETTER FOR US TO GO TO DENVER AS

FAMILY THAN FOR ME TO GO TO DC ON MY OWN.

Not to mention that my email box is so full I can't get anymore mail

anyways, I am going to work on erasing everything tonight and

tomorow so it will be cleaned out when I get back from SLC. I wonder

how others keep up with so many emails.

IT'S QUITE A JOB. I GET DOZENS OF EMAILS DAILY. MUCH IS JUNK, BUT

MUCH IS JOB-RELATED. NOW, I GET MUCH RELATED TO THIS DISEASE AS

WELL - BUT I AM CERTAINLY NOT COMPLAINING ABOUT ANY OF IT. IT IS A

GREAT WAY TO COMMUNICATE. IMMEDIATE RECEIPT. I DON'T DO VERY GOOD

AT SNAIL MAIL - AND I'M SOMEWHAT PHONE - PHOBIC.

I'm curious and excited to hear from you since you live so close.

ME TOO. PAM PUT ME IN TOUCH WITH SOMEONE ELSE IN THE TULSA AREA.

SHE'S GONE OUT OF TOWN THIS WEEK AS WELL - BUT SHE WILL BE BACK ABOUT

WHEN YOU RETURN. SHE DOES NOT HAVE MSA, BUT I THINK IT WAS HER

FATHER WHO HAD IT. YEAH. THAT WAS IT. SHE'LL BE A GREAT ASSET FOR

ME FOR KNOWLEDGE, SUPPORT, AND FOR ENHANCING MY ABILITY TO SEE VIA MY

DAUGHTERS' PERSPECTIVE.

What is your neurologist's name

MY NEURO IS DR. GONZALEZ. HOWEVER, HE WAS ONE OF THE MANY DOCS IN

TULSA WHO HAD NO IDEA WHAT THEY WERE DEALING WITH. REPEATEDLY, HE

OFFERED THE ONLY OTHER THING HE COULD THINK OF - A SPINAL TAP (LP -

LUMBAR PRICK). THAT WAS NEVER DONE, AND I NOW SEE WHERE THAT MIGHT

HELP? ANYWAY, HE IS A GREAT DOC, BUT I GUESS HE DOESN'T WANT TO DEAL

WITH ME, AS MY INTERNIST WAS TO CALL HIM AND SEE IF HE WANTED TO

CONTINUE - AND I HAVE NOT BEEN CALLED TO SCHEDULE AN APPOINTMENT.

OF COURSE, MY INTERNIST'S OFFICE IS RATHER DISORGANIZED. SHE'S

GREAT - BUT WE ALL HAVE OUR STRONG AND WEAK POINTS.

that you saw in Tulsa and what is your internists name

MY INTERNIST IS DR. WELDON.

and where is he located?

SHE (SHIRLEY) IS GREAT. SHE IS A CHRISTIAN, AND HAS A DEFINITELY

DIFFERENT PERSPECTIVE, AS SHE HAS FIBROMYALGIA - WHICH I'M SURE HELPS

HER HAVE BETTER EMPATHY.

I'm interested to know more about you and your MSA srory.

JUST LET ME KNOW WHEN YOU'RE READY, AND I'LL WRITE IT - OR WE CAN

CHAT.

I'm off the main list until next week so if you write me sooner you

can send it to greercj@y...

NOT SURE WHAT TO DO. GUESS I'LL COPY AND PASTE THIS TO AN EMAIL -

BUT NOT SURE HOW YOU'LL GET IT WHEN YOUR EMAIL BOX IS FULL?

ANYWAY, I'LL DO MY BEST.

I'll only be here... I have to go to bed now. I'm so tired my body

is leaning to the left and I can hardly sit up by myself wen I am

so week and tired.

CAN'T RELATE AT ALL. BELIEVE ME? HOPE NOT. WHILE I DON'T TEND

TO LIST (UNLESS WALKING) I DO HAVE MULTIPLE OTHER PROBLEMS - WHICH

ARE MADE WORSE BY PHYSICAL FATIGUE (AS WITH ANYONE ELSE HERE

PROBABLY).

Bye Connie

CATCH YA LATER.

I TOO AM TO BE OUT OF TOWN, ASSUMING MY DOC ALLOWS IT (NOT SURE WHAT

SHE'LL SAY AFTER WE TALK TUESDAY... ESPECIALLY GIVEN MY CHEST PAINS

AND ALL - BUT... SHE'LL PROBABLY JUST LET ME GO. WHO KNOWS? SHE

MAY NOT EVEN ORDER ANY ADDITIONAL TESTS - AS I DID HAVE BOOKOO TESTS

RUN EARLIER THIS YEAR - AND I CHECKED OUT FINE. ANYWAY, I HAVE TO GO

MYSELF - BUT NOT TO SLEEP. I GOT A NAP EARLIER. HAVE GOT TO GET A

REPORT FINISHED IF I WANT TO BE ABLE TO KEEP WORKING (PART TIME AS IT

MAY BE).

IT WAS REALLY GOOD TO HEAR FROM YOU. PLEASE DO GET BACK IN TOUCH

WITH ME.

I AM GOING TO CHECK MY YAHOO EMAIL AND THIS SITE WHEN GONE. I SHOULD

BE ABLE TO CHECK IN IOWA, AND CHICAGO AT LEAST. AS IT WILL BE A

WORKING VACATION, I'LL ALSO BE LOGGING ONTO MY REGULAR EMAIL TO

DOWNLOAD IT ONCE EVERY COUPLE OF DAYS (OR THAT'S THE PLAN ANYWAY).

THIS TRIP IS MORE OF AN OBLIGATORY FAMIL TRIP (OBLIGATORY AS IT'S A

REUNION - AND AS MY ELDEST DAUGHTER AND I HAD THIS PLANNED BEFORE I

RESIGNED TO NO LONGER DRIVE MYSELF - NECESSITATING A WHOLE-FAMILY

TRIP - BUT I'D RATHER HAVE IT THAT WAY ANYWAY.)

NOW THE TRIP TO DENVER... I MAY ACTUALLY TAKE THAT TIME OFF AS A

TRUE VACATION. GUESS A LOT WILL DEPEND ON HOW WE'RE DOING

FINANCIALLY. STILL AMAZED AT HOW GOD HAS BLESSED US, AS WE'RE LIVING

OFF LESS THAN HALF OF WHAT I WAS MAKING BEFORE! AND WOULD YOU

BELIEVE I DON'T MISS IT AT ALL?!

WELL, BEST GET BACK TO THAT REPORT, BUT I WANTED TO GET THIS POSTED

SO MAYBE YOU'D GET YOUR 'FIX' BEFORE YOU LEFT.

TAKE CARE, AND I'LL CHAT WITH YOU WHEN YOU GET BACK.

PAUL