Re: Fwd: Update on

[Guest guest]

Gosh Lissa...be patient. Dr's really don't know it all. IT is very

frustrating for them too. Only reason I am finally feeling that

way....my daughter is studying to be one! Hah...but I've had the

disease for 19 years...and it was a toss up in the first couple of

years...I will wish for you that you never ever ever have to go on the

stupid IV solumedrol again!!!!

[Guest guest]

There are so many MSers who don't have lesions show up on MRIs for a long time. So cheer up, you might still have MS! just a joke.... LOL But it's true that lesions don't always show up. I would be furious if I was told to see a psychologist. So I don't blame you at all. Please don't leave us. You still belong here no matter what that doc says.love....Sharon Update on Well I guess this group really isn't for me. Everyone has been wonderful & I've enjoyed talking with all of you. I had my MRI on Wednesday & the results were normal of both Cspine & brain. So when I go see the MS specialist again on Feb 12th she is going to tell me that I don't have MS. The Dr that I had down here decided to go off the symptoms & the ON & the bladder issues all by themselves. She wants it on the MRI to say MS but since it's not there, I'll probably get a recommendation to

see a psychologist. I don't know what to think. I have already told my family that I had it & I've attended local support groups. I'm sure most of you are wondering... What the hell is she complaining about. She should be glad she is fine! Well that would be true I suppose if all my symptoms went away as of today. Now I have to go through all the diagnostic crap all over again & maybe not find an answer. They can say the weakness in my legs & right hand are in my head & maybe the fatigue. But they sure as hell can't say the ON is made up & I faked a Urodynamics test so I could take expensive bladder medicine. I certainly didn't fake ON so that I could be on IV steroids that make me fat & crabby! And I suppose if I am crazy then I have been for almost 5yrs now because that's how long this crap has been going on!! When I first had ON I went through the whole battery of tests & the Neuro said you are fine this is a one time shot & you'll

probably never have it again. I went home & celebrated!! Then a 1 1/2yrs later I get ON again! Then other things start happening. More MRI's...they' re normal go home! Why would I psych myself up into imagining I have MS for 4 more years after I was so happy they said no in the first place??? I can't wait to hear the doctor's theory on this one. Sorry everyone I am just a little angry today. E. Colorado Check out the new AOL. Most comprehensive set of free safety and security tools, free access to millions of high-quality videos from across the web, free AOL Mail

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[Guest guest]

hey melissa.sorry u are having to go threw this.I dont have ms,but you know were

all like a family.its not about what we have as an illness but what we all have

together.frienship,support,and symptoms.even thow you and I probly dont have

ms,are symptoms are sooo much alike those that do,how could we not belong?I know

it is frustrating,im dealn with that crap to,it angers me.my docs think i have

devics disease and they are doing nothing! It makes me so angry.being here in

this group helps me keep my sanity.we know we are not crazy so tell whoever says

it to shove it.keep goin back to the doc they will eventually do something.It

took me 3 yrs of being sick,2 mis diagnosis's,told I was crazy,and now im sick

always,disabled,and still do not know what I have.but thats ok,because I know it

is soon to come.if I have to go see my neuro once a week,eventually we will get

a dx,and be able to get treated,and get better.trust me.we all know what you are

going threw.stay strong.hugs and

prayers,cassy

[wobbletowalk@...] wrote:

There are so many MSers who don't have lesions show up on MRIs for a long time.

So cheer up, you might still have MS! just a joke.... LOL But it's true

that lesions don't always show up. I would be furious if I was told to see a

psychologist. So I don't blame you at all.

Please don't leave us. You still belong here no matter what that doc says.

love....

Sharon

Update on

Well I guess this group really isn't for me. Everyone has been wonderful &

I've enjoyed talking with all of you. I had my MRI on Wednesday & the results

were normal of both Cspine & brain. So when I go see the MS specialist again on

Feb 12th she is going to tell me that I don't have MS. The Dr that I had down

here decided to go off the symptoms & the ON & the bladder issues all by

themselves. She wants it on the MRI to say MS but since it's not there, I'll

probably get a recommendation to see a psychologist. I don't know what to think.

I have already told my family that I had it & I've attended local support

groups. I'm sure most of you are wondering... What the hell is she complaining

about. She should be glad she is fine! Well that would be true I suppose if all

my symptoms went away as of today. Now I have to go through all the diagnostic

crap all over again & maybe not find an answer. They can say the weakness in my

legs & right hand are in my head & maybe the

fatigue. But they sure as hell can't say the ON is made up & I faked a

Urodynamics test so I could take expensive bladder medicine. I certainly didn't

fake ON so that I could be on IV steroids that make me fat & crabby! And I

suppose if I am crazy then I have been for almost 5yrs now because that's how

long this crap has been going on!! When I first had ON I went through the whole

battery of tests & the Neuro said you are fine this is a one time shot & you'll

probably never have it again. I went home & celebrated!! Then a 1 1/2yrs later I

get ON again! Then other things start happening. More MRI's...they' re normal go

home! Why would I psych myself up into imagining I have MS for 4 more years

after I was so happy they said no in the first place??? I can't wait to hear the

doctor's theory on this one. Sorry everyone I am just a little angry today.

E.

Colorado

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[Guest guest]

, I happen to think that this group IS for you. I find it difficult to

imagine that plaques will not eventually

appear, and oligoclonal bands in the spinal fluid as well; this stuff takes time

to develop. I was diagnosed

(correctly, alas) at age 19, and am now nearly 70, but I am reasonably convinced

that I had indicators long

before the diagnosis. I hope, speaking for myself, that you stay with us for as

long as you feel comfortable

doing so; you are not the only person on this list who has symptoms of MS and

has not yet been diagnosed.

Love to you, in heaps, n, a real fan of this list!

--------- Update on

Well I guess this group really isn't for me. Everyone has been wonderful & I've enjoyed talking with all of you. I had my MRI on Wednesday & the results were normal of both Cspine & brain. So when I go see the MS specialist again on Feb 12th she is going to tell me that I don't have MS. The Dr that I had down here decided to go off the symptoms & the ON & the bladder issues all by themselves. She wants it on the MRI to say MS but since it's not there, I'll probably get a recommendation to see a psychologist. I don't know what to think. I have already told my family that I had it & I've attended local support groups. I'm sure most of you are wondering...What the hell is she complaining about. She should be glad she is fine! Well that would be true I suppose if all my symptoms went away as of today. Now I have to go through all the diagnostic crap all over again & maybe not find an answer. They can say the weakness in my legs & right hand are in my head & maybe the fatigue. But they sure as hell can't say the ON is made up & I faked a Urodynamics test so I could take expensive bladder medicine. I certainly didn't fake ON so that I could be on IV steroids that make me fat & crabby! And I suppose if I am crazy then I have been for almost 5yrs now because that's how long this crap has been going on!! When I first had ON I went through the whole battery of tests & the Neuro said you are fine this is a one time shot & you'll probably never have it again. I went home & celebrated!! Then a 1 1/2yrs later I get ON again! Then other things start happening. More MRI's...they're normal go home! Why would I psych myself up into imagining I have MS for 4 more years after I was so happy they said no in the first place??? I can't wait to hear the doctor's theory on this one. Sorry everyone I am just a little angry today.

E.

Colorado

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[Guest guest]

,

Chuck's MRI only show one lesion but because of some of the symptoms and the fact that when we took him to the ER when he couldn't walk, and when they contacted the neuro he said to start him on IV steroids, in about 2 hrs he was able to raise his leg and then a few hrs later stand and walk. There are a lot of people here that don't have a definite diagnosis yet. Please don't leave.

I will keep you in my prayers.

Hugs

nne

Breast Cancer Patients Soul Mates for Lifehttp://www.geocities.com/chucky5741/breastcancerpatients.htmlBreastCancerStories.comhttp://www.breastcancerstories.com/content/view/433/161/Angel Feather Loomerwww.angelfeatherloomer.blogspot.comCheck out my other ornaments atwww.geocities.com/chucky5741/bcornament.htmlLots of info and gifts at:www.cancerclub.com

Update on

Well I guess this group really isn't for me. Everyone has been wonderful & I've enjoyed talking with all of you. I had my MRI on Wednesday & the results were normal of both Cspine & brain. So when I go see the MS specialist again on Feb 12th she is going to tell me that I don't have MS. The Dr that I had down here decided to go off the symptoms & the ON & the bladder issues all by themselves. She wants it on the MRI to say MS but since it's not there, I'll probably get a recommendation to see a psychologist. I don't know what to think. I have already told my family that I had it & I've attended local support groups. I'm sure most of you are wondering...What the hell is she complaining about. She should be glad she is fine! Well that would be true I suppose if all my symptoms went away as of today. Now I have to go through all the diagnostic crap all over again & maybe not find an answer. They can say the weakness in my legs & right hand are in my head & maybe the fatigue. But they sure as hell can't say the ON is made up & I faked a Urodynamics test so I could take expensive bladder medicine. I certainly didn't fake ON so that I could be on IV steroids that make me fat & crabby! And I suppose if I am crazy then I have been for almost 5yrs now because that's how long this crap has been going on!! When I first had ON I went through the whole battery of tests & the Neuro said you are fine this is a one time shot & you'll probably never have it again. I went home & celebrated!! Then a 1 1/2yrs later I get ON again! Then other things start happening. More MRI's...they're normal go home! Why would I psych myself up into imagining I have MS for 4 more years after I was so happy they said no in the first place??? I can't wait to hear the doctor's theory on this one. Sorry everyone I am just a little angry today.

E.

Colorado

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[Guest guest]

,

I really do hope that this isn't the group for you. But only because I

wouldn't wish the MonSter on anybody! I don't believe that this group

" isn't " for you. Just because you don't have a diagnosis or because you

may not get one because the MRI was normal still does NOT mean that you

don't have MS. If you're having the symptoms, then where better to get

information about the symptoms than other people who have the symptoms.

I do believe we've have/had many person in the group that are having a

difficult time getting a diagnosis. After all there are people with a

Possibly MS sort of diagnosis, and people with a Probably MS sort of

diagnosis, and then there are those of us who have the definite MS

diagnosis.

I have a friend who was hospitalized for over a week over 14 years ago

with an MS like episode. She was unable to do ANYTHING for herself

during that period of time. She was given a " Possible MS " diagnosis, and

sent home after all cleared up. She's never had another exacerbation of

any kind. Does she have MS? Could be. But, she may never present with

any symptoms ever again, or maybe not for 20 or 30 years. This is the

type of MS that most of wish we had, if we're going to have it. It's

also, or was, known as Benign Multiple Sclerosis.

I'd be willing to stake everything I own, everything I know, and

everything that I can still do on the fact that, had they looked for MS

on my first presenting symptoms, that I would have been told that I

didn't have it as well. Over the years, I KNOW that some of my doctors

thought I was completely faking or a complete hypochondriac. I KNEW

what I was experiencing was real, and I'm sure you do as well.

It's been my understanding that not everyone with MS will present with

lesions in either the brain or spine. Well that would be one of the

reasons for a " possible " diagnosis. Symptoms without actual visible proof.

Oh I can completely understand your frustration with this whole thing. I

think I'd be highly bent out of shape as well.

Out of curiosity, the MRI's that you had. Were they performed in Open or

Closed machines? And how old was the machine that they used? On my last

MRI I was completely surprised to find out I wasn't being put into that

huge whole body encasing MRI machine. The tech setting me up and

hooking me up said something about this being their " new " machine. And

if my memory hasn't leaked everything out through the sieve that it is,

she also said that besides the shorter machine being easier on patients,

it was more accurate than the older machines.

I'm sorry that you are having to " deal " with all of this at this point

in time. If I remember correctly, you aren't the only one in this group

who felt that their doctors thought they were faking things.. I know

mine did when he sent me for some type of nerve conduction test for

carpal tunnel years and years ago.. they came back normal.. his reply

was " You don't have carpal tunnel " .. but he didn't bother to look into

anything further. I saw THREE doctors and a couple of doctors in

Emergency Rooms here in Pennsylvania, about THREE in Connecticut over

the years I lived there. Not ONE of them put any of the symptoms

together, I HAD to tell my PCP that I was pretty sure I had MS.. She

looked at me like I was a fruitcake...

Oh, and my MRI reports NEVER said that I HAD MS. I had 7 lesions on the

first MRI, and all the report said was that they were " consistent " with

MS..

I don't know what else to say, except that I wish you didn't have to go

through all of this frustration and stress.... Stress makes symptoms

worsen (maybe not today, but at some point). And I'm hoping that you

won't give up the pursuit of a diagnosis, something is causing your

symptoms.

You save the results to the MRI from Wednesday were normal. Have you

already talked with the doctor on the phone, or did you get this

information from some other source? I mean I managed to get out of the

tech that she did see a lesion on the right side of my brain, when I

told her that there HAD to be one, with all my mood swings and such. But

not all the techs know what they are looking at when they see it. And

some lesions are extremely hard to pick out, even with the contrast they

use. I had 7 on my first MRI, and it was enhanced as well. I think 4

were immediately noticeable the rest you really had to imagine to see.

Just hang loose, and try to take it easy.. I'd tell you to take a nice

long hot bubble bath.. but the hot water isn't good for us, and what

good are bubbles without the hot water? Though I'm a bad girl, and when

I need a long hot soak in a tub to relax me.. I take one anyway! If need

be I can all for help to get out of the tub when I'm finished.

Take Care and know that we are all here to listen when you need to vent.

(((((((((((((((HUGS)))))))))))))))))))

|)onna

lissa252000@... wrote:

>

> Update on

>

> Well I guess this group really isn't for me. Everyone has been wonderful

> & I've enjoyed talking with all of you. I had my MRI on Wednesday & the

> results were normal of both Cspine & brain. So when I go see the MS

> specialist again on Feb 12th she is going to tell me that I don't have

> MS. The Dr that I had down here decided to go off the symptoms & the ON

> & the bladder issues all by themselves. She wants it on the MRI to say

> MS but since it's not there, I'll probably get a recommendation to see a

> psychologist. I don't know what to think. I have already told my family

> that I had it & I've attended local support groups. I'm sure most of you

> are wondering...What the hell is she complaining about. She should be

> glad she is fine! Well that would be true I suppose if all my symptoms

> went away as of today. Now I have to go through all the diagnostic crap

> all over again & maybe not find an answer. They can say the weakness in

> my legs & right hand are in my head & maybe the fatigue. But they sure

> as hell can't say the ON is made up & I faked a Urodynamics test so I

> could take expensive bladder medicine. I certainly didn't fake ON so

> that I could be on IV steroids that make me fat & crabby! And I suppose

> if I am crazy then I have been for almost 5yrs now because that's how

> long this crap has been going on!! When I first had ON I went through

> the whole battery of tests & the Neuro said you are fine this is a one

> time shot & you'll probably never have it again. I went home &

> celebrated!! Then a 1 1/2yrs later I get ON again! Then other things

> start happening. More MRI's...they're normal go home! Why would I psych

> myself up into imagining I have MS for 4 more years after I was so happy

> they said no in the first place??? I can't wait to hear the doctor's

> theory on this one. Sorry everyone I am just a little angry today.

> E.

> Colorado

> ------------------------------------------------------------------------

[Guest guest]

Melisssa~

I know this is all very frustrating for you. But, don't let it get you down. You obviously know there is something wrong. If it's not the MS that is causing the ON, I don't know what it could be. I've got ON also. My doctor finally called me and made an appt. for me for Feb. 15th. He's not so sure I have MS either. And I've been living for over 20 years thinking that's what I have.

Don't think that this is not the group for you. You have something wrong and we are here to support you. Not everyone here does have MS. I'll be lifting you in prayer, sister.

God bless....

http://www.Shoutlife.com/vallee45

http://360.yahoo.com/vallee45

-- Update on

Well I guess this group really isn't for me. Everyone has been wonderful & I've enjoyed talking with all of you. I had my MRI on Wednesday & the results were normal of both Cspine & brain. So when I go see the MS specialist again on Feb 12th she is going to tell me that I don't have MS. The Dr that I had down here decided to go off the symptoms & the ON & the bladder issues all by themselves. She wants it on the MRI to say MS but since it's not there, I'll probably get a recommendation to see a psychologist. I don't know what to think. I have already told my family that I had it & I've attended local support groups. I'm sure most of you are wondering...What the hell is she complaining about. She should be glad she is fine! Well that would be true I suppose if all my symptoms went away as of today. Now I have to go through all the diagnostic crap all over again & maybe not find an answer. They can say the weakness in my legs & right hand are in my head & maybe the fatigue. But they sure as hell can't say the ON is made up & I faked a Urodynamics test so I could take expensive bladder medicine. I certainly didn't fake ON so that I could be on IV steroids that make me fat & crabby! And I suppose if I am crazy then I have been for almost 5yrs now because that's how long this crap has been going on!! When I first had ON I went through the whole battery of tests & the Neuro said you are fine this is a one time shot & you'll probably never have it again. I went home & celebrated!! Then a 1 1/2yrs later I get ON again! Then other things start happening. More MRI's...they're normal go home! Why would I psych myself up into imagining I have MS for 4 more years after I was so happy they said no in the first place??? I can't wait to hear the doctor's theory on this one. Sorry everyone I am just a little angry today.

E.

Colorado

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