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Glenda,

I was

told I have NeuroSarc. I was told I probably have a lesion in

the brainstem where the nerves cross over. I had an inconclusive MRI, my doc said “it

could be to small to see, but the symptoms told him

where the lesion is, or so he thinks. I have had many strange symptoms. I have left side Neuropathic

pain, my left foot the outside and the little toe burn most of the time, which

sends these burning type pain up the leg.

I have some of the same pain in the left hip. The left side of my face remains numb

all the time, but I get the trigieniaml pain from

time to time. I have transient paralysis on that side.

I started

9 years ago in my lungs, pred. remission. Next episode

worse, pred. remission. Next worse, pred

didn’t work so hot, and made me crazy, each time I’ve had to take

it the side effects and the psychosis get worse, not I have a love/hate

relationship with the drug. I am on

1 mg/daily, and only have a week left and I’m

off. I have been weaning off the pred. 1mg/month for some time now. Each episode got worse! I now have pulmonary and systemic/skin

involvement taking plaquanil for that. Now with the neurosarc,

I am on. Methotrexare, plaquanil, neurontin,

nortriptyline, ativan and effexor, and vicodin for the

pain, which barely touches it, but takes the edge off. I tried duragisic

patch, got N & V x 10 hours. Saw a pain clinic doc, suggested a nerve block,

but that has a 50/50 chance since this is neuropathic.

Just

quit nusing after 27 years, to see if the stress of

that will help this monster to settle down?? (I loved my job, and feel a little empty

inside). Oh ya

I’m getting Sarc in my joints, my “get

this” my Right little finger, and now my left middle finger. Skin lesions

everywhere!!! I am on the computer

now because my arm started burning from the lesions, and had to get up and rub lotion

all over my arm. ( I did however, find a great lotion, that helps with the

burning sensation of the lesions) it is, of course, Kay visibly fit body

lotion, which is suppose to be awesome for things like stretch marks, spider veins,

helps break down adipose (fat) tissue. I have seen it do all those things, and

found out in desperation that it also works on my sarc

lesions.

So I started

plum, went to systemic, skin, neuro. I had trouble with my ears like I was in

a tunnel and that came and went, drove me crazy. I would get lost, especially while

driving, and sometimes just coming out of a patient’s room, I would

forget where the nurse’s station was? Scary! I had what I called brain fog. The mextho

helped my brain fog and the hearing thing a lot. But seem to have chronic pain now, every

day my left foot hurts, and sometimes the left thigh too.

Ok enough,

now you know the “whole story”.

Glenda

I’m curious, did you ever work in a hospital?

I’m

glad you are doing ok on the prednisone, I can’t

take anything over 20mgs/day anymore and even that is pushing it.

Would

love to hear from you, sorry to rattle on about me, but I guess I’m

feeling a little empty tonight, have since I quit the hospital on Thursday,

Rose knows what I mean, don’t ya

girlfriend?

Anyway,

that’s enough to put you to sleep, which is probably why I’m

up!!

Love

and Prayers to all,

Marla

Re:

New to Group

%

New to Group

I'm new to this group and have been

reading different emails re neurosarcoidosis. I was dx June 2002 after l

1/2 years of symptoms (biopsy). My brain is the only part of my body

effected with granulomas. I am confused with the term

neurosarc. Apparently it is not in the brain only but includes the

body. Can anyone help me to understand the difference. Would like

to hear from brain sarc people also. Thanks, Glenda

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Come stand by my side where I am going,

Take my hand if I should stumble and fall,

It's the strength and love that you share,

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- Hoyt Axton

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The Neurosarcoidosis Community

Live Group Chat:-

Mondays & Fridays 10pm EST USA

http://www.elderwyn.com/neurosarcoidosis/chat.php

Message Archives and Digest Attachment Pictures:-

http://groups.yahoo.com/group/Neurosarcoidosis/messages

Members Database:-

Listings of locations, phone numbers, and instant

messengers.

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Personal Complaints or problems:-

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~~~~ *** ~~~ *** ~~~ *** ~~~~

Come stand by my side where I am going,

Take my hand if I should stumble and fall,

It's the strength and love that you share,

That gives me what I need most of all.

- Hoyt Axton

~~~~ *** ~~~ *** ~~~ *** ~~~~

Your use of

Yahoo! Groups is subject to the Yahoo!

Terms of Service.

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

Live Group Chat:-

Mondays & Fridays 10pm EST USA

http://www.elderwyn.com/neurosarcoidosis/chat.php

Message Archives and Digest Attachment Pictures:-

http://groups.yahoo.com/group/Neurosarcoidosis/messages

Members Database:-

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messengers.

http://groups.yahoo.com/group/Neurosarcoidosis/database

Bookmarks:-

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Personal Complaints or problems:-

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~~~~ *** ~~~ *** ~~~ *** ~~~~

Come stand by my side where I am going,

Take my hand if I should stumble and fall,

It's the strength and love that you share,

That gives me what I need most of all.

- Hoyt Axton

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  • 2 weeks later...

Hi Irene,

I'd say that if you are generally happy with Kaiser, don't switch. I know

several people who were initially denied, but appealed the decision, won, and

have gone on to have the surgery. And regarding comorbs? The high blood pressure

and elevated cholesterol are, or can be, considered comorbs. The back problems

can also be considered comorbs if weight related. My only comorb was bad knees.

Where are you? I'm in Berkeley. If you're in the area, I can recommend some

great support groups.

Hang in there and don't give up before you've really begun!

Eleanor

idharrington wrote:

> Hi everyone. I have been reading many of the messages on this site

> and I feel like I know all of you already.

> My name is Irene and I am just starting out on this journey of

> gastric bypass surgery. I was so excited to get my notice to go to

> the very first meeting that I was floating. Do you know how hard

> that is at my weight. Having been with Kaiser for many years and

> having a few surgeries I didn't think this process would be any

> different other than meeting with a Phy. and a Dietitian. Boy was I

> wrong. I didn't know, first, that it would take so long to get a

> surgery date, nor did I know you had to go through so many hoops to

> get one. I know that it will be worth it at the end, and I really

> don't mind the wait - this was just an eye opener. I am the kind of

> person that needs to be mentally ready for any kind of " procedure "

> done to me that will cause pain - that includes going to the dentist

> or looking at a needle. Just a baby at heart....but this is

> something I truely have wanted for some time now.

> Reading alot of the messages, I am concerned that I may not even be

> approved with Kaiser to go to the next step. I am 52 years old and

> do not have any of the co-morbs. I am on the border line of high

> blood pressure, have elevated cholesteral but relatevily in good

> health - other than being obese. I do have a back problems and other

> things that are anoying, but I have just learned to live with it. I

> guess I got tired of going to my doctor in the early days with

> problems and all they would say is to loose weight - so my thinking

> now is why bother going in with problems when I know what they are

> going to say... My BMI (at last count) was 42. So you see, based on

> Kaiser's criteria, I will probably be denied - but then I think why

> would my doctor refer me for this surgery if I didn't meet some

> criteria...??? I do meet the NIH guidelines but not Kaiser's

> guidelines it sounds like.

> Since it is open enrollment for changing plans, I could change

> coverages and go with Blue Shield. I have had Kaiser so long that it

> scares me to move to the unknown. How do I know that I will get a

> doctor that is in favor of gastric bypass surgery. I now have a

> wonderful doctor with Kaiser and she is very supportive of my

> decision for this surgery.

> Well enough of this - just very nervious that I will be stopped

> before I even begin...Thanks for listening....

--

Eleanor Oster

eleanor@... (personal address)

www.smallboxes.com/gastricbypass.htm

Berkeley, CA

Open RNY (100 cm bypassed) 07/15/2003

Kaiser Richmond (CA)

P. Fisher, M.D.

Start (05/09/2003-Orientation) 319 / Current ~245 / Goal 150

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Hi Irene,

When is your meeting? Is it an orientation meeting for the Bariatrics

Program?

I'm certainly no expert on the ins & outs of Kaiser's routine, but

I don't think that they would schedule an orientation meeting unless you

were approved.

I hope all goes well for you. I think that you are wise to pursue

this before you are faced with all sorts of co-morbities.

Take care,

Kay

idharrington wrote:

Hi everyone. I have been reading

many of the messages on this site

and I feel like I know all of you already.

My name is Irene and I am just starting out on this journey of

gastric bypass surgery. I was so excited to get my notice

to go to

the very first meeting that I was floating. Do you know how

hard

that is at my weight. Having been with Kaiser for many years and

having a few surgeries I didn't think this process would be any

different other than meeting with a Phy. and a Dietitian.

Boy was I

wrong. I didn't know, first, that it would take so long to

get a

surgery date, nor did I know you had to go through so many hoops

to

get one. I know that it will be worth it at the end, and

I really

don't mind the wait - this was just an eye opener. I am the

kind of

person that needs to be mentally ready for any kind of "procedure"

done to me that will cause pain - that includes going to the dentist

or looking at a needle. Just a baby at heart....but this

is

something I truely have wanted for some time now.

Reading alot of the messages, I am concerned that I may not even

be

approved with Kaiser to go to the next step. I am 52 years

old and

do not have any of the co-morbs. I am on the border line

of high

blood pressure, have elevated cholesteral but relatevily in good

health - other than being obese. I do have a back problems

and other

things that are anoying, but I have just learned to live with it.

I

guess I got tired of going to my doctor in the early days with

problems and all they would say is to loose weight - so my thinking

now is why bother going in with problems when I know what they

are

going to say... My BMI (at last count) was 42. So you

see, based on

Kaiser's criteria, I will probably be denied - but then I think

why

would my doctor refer me for this surgery if I didn't meet some

criteria...??? I do meet the NIH guidelines but not Kaiser's

guidelines it sounds like.

Since it is open enrollment for changing plans, I could change

coverages and go with Blue Shield. I have had Kaiser so long

that it

scares me to move to the unknown. How do I know that I will

get a

doctor that is in favor of gastric bypass surgery. I now

have a

wonderful doctor with Kaiser and she is very supportive of my

decision for this surgery.

Well enough of this - just very nervious that I will be stopped

before I even begin...Thanks for listening....

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  • 5 months later...
Guest guest

Diane: Welcome to the group! You'll find us a great group of people-

-someone is always willing to tackle any question, and the advice is

always great. At least that's been my experience in my few weeks as

a member.

I have a question for you. Did you receive your referral recently?

I expect to get mine on April 24th (am having the Kaiser labs and

scans done prior to that), but my PCP is suggesting that Kaiser is

now sending people to UCLA. I much prefer Scripps and their

surgical team, so I'd love to be able to report on someone from

Sacramento being sent to Scripps! You will drive past UCLA on your

way! (I live in Orange County about half-way between UCLA and

Scripps.)

Thanks!

Pat

Pre-Op

>I will be going to San Diego from Modesto for the surgery at

>Scripps Hospital.

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Guest guest

Diane: Welcome to the group! You'll find us a great group of people-

-someone is always willing to tackle any question, and the advice is

always great. At least that's been my experience in my few weeks as

a member.

I have a question for you. Did you receive your referral recently?

I expect to get mine on April 24th (am having the Kaiser labs and

scans done prior to that), but my PCP is suggesting that Kaiser is

now sending people to UCLA. I much prefer Scripps and their

surgical team, so I'd love to be able to report on someone from

Sacramento being sent to Scripps! You will drive past UCLA on your

way! (I live in Orange County about half-way between UCLA and

Scripps.)

Thanks!

Pat

Pre-Op

>I will be going to San Diego from Modesto for the surgery at

>Scripps Hospital.

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Guest guest

Welcome, Diane! I am glad that the nice woman is here. If we pool all

our knowledge, then this group knows just about everything about

gastric bypass, before and after. Everyone is willing to share

experiences and advice, and we grow very fond of each other along the

way. Hope you have a great experience here!

Elaine

Dr. Park

Kaiser Richmond

5-19-03 (almost a year!)

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Guest guest

Welcome, Diane! I am glad that the nice woman is here. If we pool all

our knowledge, then this group knows just about everything about

gastric bypass, before and after. Everyone is willing to share

experiences and advice, and we grow very fond of each other along the

way. Hope you have a great experience here!

Elaine

Dr. Park

Kaiser Richmond

5-19-03 (almost a year!)

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Guest guest

Hi Elaine,

Thank you for the welcome!

I am looking forward to finally have the surgery done. I have gone

to three seminars in the past two years. I had hoped to have it

done here in Modesto with my Medicare paying 80 percent and me the

rest but I was told I didn't meet the minimum requirements which

shocked me since I have alot wrong with me (healthwise) Luckily I

also have Kaiser so am back to going with that. Now will be attending

my fourth seminar second one with Scripps next month. Take care

Diane

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Guest guest

Hi Elaine,

Thank you for the welcome!

I am looking forward to finally have the surgery done. I have gone

to three seminars in the past two years. I had hoped to have it

done here in Modesto with my Medicare paying 80 percent and me the

rest but I was told I didn't meet the minimum requirements which

shocked me since I have alot wrong with me (healthwise) Luckily I

also have Kaiser so am back to going with that. Now will be attending

my fourth seminar second one with Scripps next month. Take care

Diane

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