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Wait a minute, Rexanne!! I'm from Wisconsin-GO BADGERS!!!!!!!!

JEAN

MiniGastricBypassonelist wrote:

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>

> There are 25 messages in this issue.

>

> Topics in today's digest:

>

> 1. Re: Insurance Pre-Cert Problems

> From: Wilsn@...

> 2. Approved

>

> 3. Re: Insurance Pre-Cert Problems

>

> 4. Re: Insurance Pre-Cert Problems

> From: Wilsn@...

> 5. Re: Denied - What am I going to do now?

>

> 6. Re: right place?

> From: stevie@...

> 7. OMG! OMG! OMG! I'm scheduled!!!

> From: sMama2@...

> 8. Re: Digest Number 967

> From: RexanneLSW@...

> 9. Re: OMG! OMG! OMG! I'm scheduled!!!

>

> 10. Re: YAY!!!!!!!!! 3-31-00

>

> 11.

> From: GiftAngels@...

> 12. re:

>

> 13. Re: Re: right place?

> From: MCypher31@...

> 14. Re: 's success

> From: valmaboyz@...

> 15. Surgery Scheduled!!!

> From: sharhazel@...

> 16. Re: Kitty

> From: valmaboyz@...

> 17. Re: OMG! OMG! OMG! I'm scheduled!!!

> From: MCypher31@...

> 18. Re: OMG! OMG! OMG! I'm scheduled!!!

> From: zoeybw@...

> 19. Re: Surgery Scheduled!!!

> From: sMama2@...

> 20. Re: 3-31-00

>

> 21. Re: Zoey

> From: sMama2@...

> 22. Denial

> From: valmaboyz@...

> 23. Re: Zoey

> From: zoeybw@...

> 24. Re: OMG! OMG! OMG! I'm scheduled!!!

> From: lolipop32@...

> 25. RE: CHRISTINE

>

>

>

_______________________________________________________________________________

>

_______________________________________________________________________________

>

> Message: 1

> Date: Mon, 27 Mar 2000 13:42:04 EST

> From: Wilsn@...

> Subject: Re: Insurance Pre-Cert Problems

>

> FG,

> I sent Dr. R and Debbie the information. Should I wait to see if they call

> the insurance company before I call them back myself and tell them that Dr. R

> is too busy?

>

>

> In a message dated 03/27/2000 11:30:59 AM Central Standard Time,

> croby@... writes:

>

> >

> >

> > Yes , I was told by my insurance company to have Dr R call them. I

> > called them back and said that Dr R was too busy to call and that I needed

> a

> > contact NAME and a fax number. They gave them to me. I faxed the

> > information to that person directly.

> >

> > fg

> >

> > At 10:03 AM 03/27/2000 EST, you wrote:

> > >From: Wilsn@...

> > >

> > >Hello Everyone,

> > >I just got off the phone with my insurance company. I told them that Dr.

> R'

> > s

> > >office has faxed in the request for a pre-certification for surgery on

> > March.

> > >18th and I wanted to check on the progress. They told me that Dr. R has

> to

> >

> > >CALL them to get a pre-cert. They gave me 2 different ext. numbers and 2

> > >names for him to ask for. Has anyone else had this to happen??? Is this

> a

> >

> > >good sign or a bad sign???

> > >

> > >MGB Wannbe

>

>

_______________________________________________________________________________

>

_______________________________________________________________________________

>

> Message: 2

> Date: Mon, 27 Mar 2000 13:51:26 -0500

>

> Subject: Approved

>

> WOOOOOOOOOOOHOOOOOOOOOOOOOOO!!!!!!!!!!!!! to & !!!! I won't be far

behind ya ladies! I hope to have my packet sent out by week's end!

>

> Sue(Maine)

>

>

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  • 1 year later...

HI Lawanda,

My name is Maciejewski, (pronounced Ma-je-ski) and my husband Jeff has

been " conditionally " diagnosed with MSA. He is 36, and his symptoms are

sporadic, but progressively getting worse, and consistent with MSA. My

heart goes out to you and all who experience this condition (wonder why

they don't call it a disease?). The reason I say conditionally is that no

one in our area is really equipped to make a conclusive diagnosis. But

after reading the stories that these good people shared with us, I am 95%

convinced that Jeff has MSA. I have taken excerpts from the various

e-mails, and several research articles, and compiled them for our internist

(he made the first suggestion that MSA could be what we are looking at). I

took them by his office on Friday around 2:00. He is well aware of Jeff's

history, and by 3:30 we had a call from him to be at his office first thing

Monday morning so we can FINALLY get a game plan!!

I really didn't mean to ramble, I guess what I'm trying to say is that only

through this fine group of people were we able to finally convince someone

that we were dealing with a serious problem. You have found a good place

to come, Lawanda. I will keep you, and all the patients and caregivers of

this group in my prayers.

Re: introduction

Greeting LaWanda!

I am a newbie to all this MSA stuff too! I am sad to hear how life has

been

going for you..... especially on your birthday.

The people on this list are wonderful. I have found that no question goes

unanswered, and no sorrow goes unnoticed. The expertise here is of the

" been there, done that " school of knowledge.

Take care,

introduction

Hello all, Mr. Summers gave me this address when I talked with him on

the 10th. Then he had to write me back with the address because I

abbreviated some words and did not know what I had abbreviated.

The last 6 weeks (including this week) have been the hardest I have

ever had to face. I am 39-today, and 6 Weeks ago was hospitalized

because I was very ill. I spent 8 days and what seemed like a

thousand tests in the hospital and on Friday, August 3rd at 11:30 p.m.

one of the many doctors who saw me and told me that I have Multiple

System Atrophy. The nuerologist(?) said that multiple areas of my

brain were affected. Then he informed me that I was hypotensive,

which I had no idea about that. That was why I was " near " fainting,

falling down, etc. I had thought (at least for the past 6 mos or so)

that my bp was high - 200/150. Of course it was always (before

hospital) taken sitting down. My heart rate would run anywhere from

70 to 165. Few of the doctors I had seen had made any comments on

this. They all thought it was because of the mystery infection that I

had. Anyway, I learn all of this, then come to some kind of grip, not

sure what kind yet. My 65 year old mother-whom I was taking care of

(I thought) is now my care giver. I also have two boys. She has to

take over much of thier care. And boy do I ever feel guilty about

that. Then on the 10th I decided to write here the next day and BOOM

America is changed forever. I did not want to write during that awful

time and make it seem like I was whining (feeling guilty again) and

today I couldn't cry real tears and got mad. My mother made me feel a

little better by telling me she would put the " tears " in my eyes so I

could cry if I wanted her to. At least I smiled at that. Then to

put it all down to a very bad day it is my birthday and my boys forgot

and my mother is sick and I haven't been " up " to makeing my own cake.

About the florinef. That is what I am on right now. .1 mg. I never

really understood why except the dr told me I needed it to boost up my

pressure. He told me to drink plenty of water (I thought that was

because I stopped sweating) and increase my salt intake. But he did

not say by how much. So now I am wondering if I increased it enough.

Thank you all for being here and reading.

LaWanda

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

unsubscribe by sending a blank email to

shydrager-unsubscribe

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Hello Folks,

I want to thank you all again for your many replies to my requests for

information on MSA/SDS. After reviewing everything, and reading several

articles on the subject, Jeff and I are 95% convinced that he is suffering

from this condition. I took the articles and cross sections of the emails

I received to Jeff's internist on Friday afternoon, and we are going to

meet with him Monday morning for a " strategic planning session " . If you

can stand another story, I'll share ours with you:

Jeff is 36 yrs old. Does not drink, use drugs or smoke. Does have a nasty

habit of chewing tobacco. About 3 years ago, he began having some serious

gastrointestinal problems. This included chronic diarrhea, nausea,

unexplained stomach pains, difficulty swallowing and esophageal reflux.

His internist suspected some type of gastrointestinal or endocrine

problem. After a meal, he would be extremely tired, and would ofen fall

asleep at the dinner table. We thought it might be a blood sugar problem.

In November 1999 he was hospitalized for 4 days, running high fever,

severe vomiting, dizziness, etc. He remembers little of the first two

days. All the standard test were performed, and he was diagnosed with

possible e-coli or Crohn's disease. He was pumped full of fluids and IV

antibiotics, and felt great after that (for a month). On new year's day

2000 he was in the hospital again, this time with dangerously low BP, and

watery diarrhea, which was diagnosed as a bowel impaction. Again the IV,

and again released. He went to the hospital in February to undergo

extensive testing of his endocrine system and gastrointestinal system.

(He's had about 5 colonoscopy's in 2-1/2 years). Results: inconclusive. In

April 2000 he was sent to & White hospital in Temple, TX for another

battery of tests. Again, inconclusive. Everywhere we went, we would get

the same answer- we can SEE that something's wrong, but we don't know what

it is!! So we became fed up, and just let things go. Jeff continued to

have bowel problems and what we thought was blood sugar problems (we now

know that it was the orthostatic hypotension). Then in Feb of 2001 we had

a breakthrough of sorts. We were at the dinner table, everything seemed

OK. All of a sudden I could see that Jeff was not right. He was

disoriented and seemed to have problems speaking. He said afterwards that

he thought he was having a stroke because he couldn't put action to his

thoughts. His eyes were dilated like saucers. We went to his internist

and Dr said that there are only two things that will cause pupils to

unnaturally dilate: drugs, or some type of neurological problem. Dr

began doing a preliminary workup and some puzzle pieces began to fall in

place. He was sent to and White again, but this time for a neuro

consult. Unfortunately, he was seen by a doctor who had not reviewed his

file, spent about ten minutes with him, and concluded that he did not have

Shy-Drager (orthostatic hypotension was not present, as Jeff was on

regulating medication that had been prescribed by Dr. ) He did

recommend, however that Jeff curtail his cocaine use!!!! (Absolutely

floored by that one!) Since then he's been to another neurologist who

admitted he could have MSA, but she'd never had a patient with one, and if

he did have it, it was probably in the early stages. Dr. tried to

get him up to Mayo clinic, but the neurology department could not (or would

not) see him. He finally got him an evaluation up there in August of this

year. But they had to start him in internal medicine. After reviewing his

extensive history, the internist became quite alarmed. She scheduled him

for a battery of tests that, had he stayed, would have taken over 6 weeks

to complete. But our financial resources, and his work would not allow

that. SO, he got 5 days of testing out of the way (of course, all the

neurology was scheduled in the latter part, so NO neurological testing was

done). The conclusion-follow up with a full neurological evaluation for

possible MSA!!!

So, here we are. Rather than put Jeff through another heartbreaking

battery of tests, I contacted your group for information. Over the past 6

months Jeff's symptoms have gotten worse. Here's what he is experiencing:

Dizziness

Nausea

Sudden and extreme salivation folowed by nausea and dizziness

Difficulty urinating (sometimes goes 10 times a day, sometime 1 time)

Difficulty emptying bladder

Incontinence at night (twice in past 2 months)

orthostatic hypotension

blurred vision

headaches

swelling in hands and feet

feels great one minute, terrible the next

EXTREME fatigue, almost daily (yesterday he came home, sat on the couch and

fell so fast asleep, I couldn't wake him)

Inability to regulate body temp, inability to sweat

trouble swallowing

trouble with movement, stumbling, inability to control fine motor skills

slow, shuffling gait

sleep apnea

shortness of breath

severe back pain

muscle rigidity in the back at night

I'm having trouble understanding him-he speaks in a low pitch monotone most

of the time

He's always had small handwriting, but it's gotten alot worse

The only thing we haven't experienced yet is the impotence. But I see

changes in that area as well (I'll just leave it at that!)

We are pretty scared right now. We have a 10 year old daughter and 2 year

old son. Our family does not know everything, because we want to be sure

before we tell them. Jeff is still working, but he comes home so tired at

night. Sometimes he even has to leave work early and just comes home and

goes to bed. He's also still playing golf, which beside his family is his

great passion in life. But golf is becoming more difficult. He was a

scratch handicap last year. This year is up to a 7-8 (which is still

really good for most people, but not Jeff) He can't control his golf swing

as well as he used to, and gets very dizzy and ill when he plays. This

summer he'd get extremely sick. After reading all the emails about

sweating and heat stroke, I think that's what was going on. Thank god he

drank a ton of water on the course as he played. Funny thing is he never

urinated!! The other day he admitted to completey missing the ball on a

putt-just could not control the movement to make contact with the ball. On

another putt, he hit it so hard it rolled past the cup (8 inches away), and

off the green. He walks around the house like an old man. And the kids

are noticing it too. , our daughter wonders why daddy is so tired

all the time, and he just doesn't have any energy to play with the baby.

Well, enough. I'm sorry if I've been too long-winded in this. But I don't

really have anyone I can talk to who can relate. So thanks for

" listening " . You've all been great! - Maciejewski (pronounced

Ma-je-ski)

Re: introduction

Greeting LaWanda!

I am a newbie to all this MSA stuff too! I am sad to hear how life has

been

going for you..... especially on your birthday.

The people on this list are wonderful. I have found that no question goes

unanswered, and no sorrow goes unnoticed. The expertise here is of the

" been there, done that " school of knowledge.

Take care,

introduction

Hello all, Mr. Summers gave me this address when I talked with him on

the 10th. Then he had to write me back with the address because I

abbreviated some words and did not know what I had abbreviated.

The last 6 weeks (including this week) have been the hardest I have

ever had to face. I am 39-today, and 6 Weeks ago was hospitalized

because I was very ill. I spent 8 days and what seemed like a

thousand tests in the hospital and on Friday, August 3rd at 11:30 p.m.

one of the many doctors who saw me and told me that I have Multiple

System Atrophy. The nuerologist(?) said that multiple areas of my

brain were affected. Then he informed me that I was hypotensive,

which I had no idea about that. That was why I was " near " fainting,

falling down, etc. I had thought (at least for the past 6 mos or so)

that my bp was high - 200/150. Of course it was always (before

hospital) taken sitting down. My heart rate would run anywhere from

70 to 165. Few of the doctors I had seen had made any comments on

this. They all thought it was because of the mystery infection that I

had. Anyway, I learn all of this, then come to some kind of grip, not

sure what kind yet. My 65 year old mother-whom I was taking care of

(I thought) is now my care giver. I also have two boys. She has to

take over much of thier care. And boy do I ever feel guilty about

that. Then on the 10th I decided to write here the next day and BOOM

America is changed forever. I did not want to write during that awful

time and make it seem like I was whining (feeling guilty again) and

today I couldn't cry real tears and got mad. My mother made me feel a

little better by telling me she would put the " tears " in my eyes so I

could cry if I wanted her to. At least I smiled at that. Then to

put it all down to a very bad day it is my birthday and my boys forgot

and my mother is sick and I haven't been " up " to makeing my own cake.

About the florinef. That is what I am on right now. .1 mg. I never

really understood why except the dr told me I needed it to boost up my

pressure. He told me to drink plenty of water (I thought that was

because I stopped sweating) and increase my salt intake. But he did

not say by how much. So now I am wondering if I increased it enough.

Thank you all for being here and reading.

LaWanda

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

unsubscribe by sending a blank email to

shydrager-unsubscribe

Link to comment
Share on other sites

Hello Folks,

I want to thank you all again for your many replies to my requests for

information on MSA/SDS. After reviewing everything, and reading several

articles on the subject, Jeff and I are 95% convinced that he is suffering

from this condition. I took the articles and cross sections of the emails

I received to Jeff's internist on Friday afternoon, and we are going to

meet with him Monday morning for a " strategic planning session " . If you

can stand another story, I'll share ours with you:

Jeff is 36 yrs old. Does not drink, use drugs or smoke. Does have a nasty

habit of chewing tobacco. About 3 years ago, he began having some serious

gastrointestinal problems. This included chronic diarrhea, nausea,

unexplained stomach pains, difficulty swallowing and esophageal reflux.

His internist suspected some type of gastrointestinal or endocrine

problem. After a meal, he would be extremely tired, and would ofen fall

asleep at the dinner table. We thought it might be a blood sugar problem.

In November 1999 he was hospitalized for 4 days, running high fever,

severe vomiting, dizziness, etc. He remembers little of the first two

days. All the standard test were performed, and he was diagnosed with

possible e-coli or Crohn's disease. He was pumped full of fluids and IV

antibiotics, and felt great after that (for a month). On new year's day

2000 he was in the hospital again, this time with dangerously low BP, and

watery diarrhea, which was diagnosed as a bowel impaction. Again the IV,

and again released. He went to the hospital in February to undergo

extensive testing of his endocrine system and gastrointestinal system.

(He's had about 5 colonoscopy's in 2-1/2 years). Results: inconclusive. In

April 2000 he was sent to & White hospital in Temple, TX for another

battery of tests. Again, inconclusive. Everywhere we went, we would get

the same answer- we can SEE that something's wrong, but we don't know what

it is!! So we became fed up, and just let things go. Jeff continued to

have bowel problems and what we thought was blood sugar problems (we now

know that it was the orthostatic hypotension). Then in Feb of 2001 we had

a breakthrough of sorts. We were at the dinner table, everything seemed

OK. All of a sudden I could see that Jeff was not right. He was

disoriented and seemed to have problems speaking. He said afterwards that

he thought he was having a stroke because he couldn't put action to his

thoughts. His eyes were dilated like saucers. We went to his internist

and Dr said that there are only two things that will cause pupils to

unnaturally dilate: drugs, or some type of neurological problem. Dr

began doing a preliminary workup and some puzzle pieces began to fall in

place. He was sent to and White again, but this time for a neuro

consult. Unfortunately, he was seen by a doctor who had not reviewed his

file, spent about ten minutes with him, and concluded that he did not have

Shy-Drager (orthostatic hypotension was not present, as Jeff was on

regulating medication that had been prescribed by Dr. ) He did

recommend, however that Jeff curtail his cocaine use!!!! (Absolutely

floored by that one!) Since then he's been to another neurologist who

admitted he could have MSA, but she'd never had a patient with one, and if

he did have it, it was probably in the early stages. Dr. tried to

get him up to Mayo clinic, but the neurology department could not (or would

not) see him. He finally got him an evaluation up there in August of this

year. But they had to start him in internal medicine. After reviewing his

extensive history, the internist became quite alarmed. She scheduled him

for a battery of tests that, had he stayed, would have taken over 6 weeks

to complete. But our financial resources, and his work would not allow

that. SO, he got 5 days of testing out of the way (of course, all the

neurology was scheduled in the latter part, so NO neurological testing was

done). The conclusion-follow up with a full neurological evaluation for

possible MSA!!!

So, here we are. Rather than put Jeff through another heartbreaking

battery of tests, I contacted your group for information. Over the past 6

months Jeff's symptoms have gotten worse. Here's what he is experiencing:

Dizziness

Nausea

Sudden and extreme salivation folowed by nausea and dizziness

Difficulty urinating (sometimes goes 10 times a day, sometime 1 time)

Difficulty emptying bladder

Incontinence at night (twice in past 2 months)

orthostatic hypotension

blurred vision

headaches

swelling in hands and feet

feels great one minute, terrible the next

EXTREME fatigue, almost daily (yesterday he came home, sat on the couch and

fell so fast asleep, I couldn't wake him)

Inability to regulate body temp, inability to sweat

trouble swallowing

trouble with movement, stumbling, inability to control fine motor skills

slow, shuffling gait

sleep apnea

shortness of breath

severe back pain

muscle rigidity in the back at night

I'm having trouble understanding him-he speaks in a low pitch monotone most

of the time

He's always had small handwriting, but it's gotten alot worse

The only thing we haven't experienced yet is the impotence. But I see

changes in that area as well (I'll just leave it at that!)

We are pretty scared right now. We have a 10 year old daughter and 2 year

old son. Our family does not know everything, because we want to be sure

before we tell them. Jeff is still working, but he comes home so tired at

night. Sometimes he even has to leave work early and just comes home and

goes to bed. He's also still playing golf, which beside his family is his

great passion in life. But golf is becoming more difficult. He was a

scratch handicap last year. This year is up to a 7-8 (which is still

really good for most people, but not Jeff) He can't control his golf swing

as well as he used to, and gets very dizzy and ill when he plays. This

summer he'd get extremely sick. After reading all the emails about

sweating and heat stroke, I think that's what was going on. Thank god he

drank a ton of water on the course as he played. Funny thing is he never

urinated!! The other day he admitted to completey missing the ball on a

putt-just could not control the movement to make contact with the ball. On

another putt, he hit it so hard it rolled past the cup (8 inches away), and

off the green. He walks around the house like an old man. And the kids

are noticing it too. , our daughter wonders why daddy is so tired

all the time, and he just doesn't have any energy to play with the baby.

Well, enough. I'm sorry if I've been too long-winded in this. But I don't

really have anyone I can talk to who can relate. So thanks for

" listening " . You've all been great! - Maciejewski (pronounced

Ma-je-ski)

Re: introduction

Greeting LaWanda!

I am a newbie to all this MSA stuff too! I am sad to hear how life has

been

going for you..... especially on your birthday.

The people on this list are wonderful. I have found that no question goes

unanswered, and no sorrow goes unnoticed. The expertise here is of the

" been there, done that " school of knowledge.

Take care,

introduction

Hello all, Mr. Summers gave me this address when I talked with him on

the 10th. Then he had to write me back with the address because I

abbreviated some words and did not know what I had abbreviated.

The last 6 weeks (including this week) have been the hardest I have

ever had to face. I am 39-today, and 6 Weeks ago was hospitalized

because I was very ill. I spent 8 days and what seemed like a

thousand tests in the hospital and on Friday, August 3rd at 11:30 p.m.

one of the many doctors who saw me and told me that I have Multiple

System Atrophy. The nuerologist(?) said that multiple areas of my

brain were affected. Then he informed me that I was hypotensive,

which I had no idea about that. That was why I was " near " fainting,

falling down, etc. I had thought (at least for the past 6 mos or so)

that my bp was high - 200/150. Of course it was always (before

hospital) taken sitting down. My heart rate would run anywhere from

70 to 165. Few of the doctors I had seen had made any comments on

this. They all thought it was because of the mystery infection that I

had. Anyway, I learn all of this, then come to some kind of grip, not

sure what kind yet. My 65 year old mother-whom I was taking care of

(I thought) is now my care giver. I also have two boys. She has to

take over much of thier care. And boy do I ever feel guilty about

that. Then on the 10th I decided to write here the next day and BOOM

America is changed forever. I did not want to write during that awful

time and make it seem like I was whining (feeling guilty again) and

today I couldn't cry real tears and got mad. My mother made me feel a

little better by telling me she would put the " tears " in my eyes so I

could cry if I wanted her to. At least I smiled at that. Then to

put it all down to a very bad day it is my birthday and my boys forgot

and my mother is sick and I haven't been " up " to makeing my own cake.

About the florinef. That is what I am on right now. .1 mg. I never

really understood why except the dr told me I needed it to boost up my

pressure. He told me to drink plenty of water (I thought that was

because I stopped sweating) and increase my salt intake. But he did

not say by how much. So now I am wondering if I increased it enough.

Thank you all for being here and reading.

LaWanda

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

unsubscribe by sending a blank email to

shydrager-unsubscribe

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