RE: MS or not-MS?

August 29, 2006

Odd, some years ago when I was with Kaiser, they told me the same thing; I had

a long history of the MS diagnosis with Kaiser, and going clear back to age 19,

and had had many positive MRIs since then. SO, I left Kaiser, and my neurologist

ordered a new MRI, and it was a "no-brainer," pardon the pun; plaques all over the

place, and lots of comments in the report about the fact that this could only be from long-standing Multiple Sclerosis; they had scanned my head, neck, upper

back and there were HEAPS of lesions on the brain-stem. That was back in the

days when you could get a copy of the MRI and the report for free; now every hos

pital in California charges $25.00 per page, and up, even if you are dirt poor! I did

send it all to the neuro-guy at Kaiser--just out of some need to set "the record"

straight. One does wonder, often and for long. . . .Love to you, , n

MS or not-MS?

Hi Challis,I didn't address your point in the last email about your dr. saying that you don't have MS.That is what my neurologist told me for over 11 years. They always said that I don't have MS but they will treat me for the symptoms since they are close to MS. Then one time I was in the hospital and a resident came in to see me and I asked about the MRI and he said that it was the same as it was six months earlier with the visible MS lesions. That was the first time I had ever heard that there really was evidence of my MS. I don't know why they hid it from me. It was a horrible medical group (Kaiser here in CA)but they did. I eventually switched medical groups and my neuro now says that I definately have MS.But here I sit 15 years later and for over 11 of them I kept thinking that this was possibly all in my mind. I didn't know what to do. Then everyone in my life kept coming up with other things than MS. But in the last couple of years I've been working to accept it and to learn more about it since I was in the dark about MS for over a decade.Have you gotten second opinions? Can you share more about your story?Thanks- you are in my prayers,

August 29, 2006

Yes, Kaiser was interesting! The other odd thing was I was seeing the head of neurology and every time I was having an exacerbation ---- he was never able to see me. In all the years I was with Kaiser he never once saw me during an attack. I'd call his office and the nurse would tell me that I just needed to go to ER and they'd call him for advice. Then they'd put me either on prednisone or admit me and give me solu-medrol. When I went to my current neuro he said I was the third patient to come to him within a couple of months from Kaiser that we were all told we didn't have MS and no meds given (Betaseron, etc) and we all HAD MS. Suspcious huh? I wonder how many others are being ignored because it's not a matter of misdiagnosed but more an issue of cover-up so that they don't have to give the care required. Totally unethical. How much did you and I

lose because we weren't treated properly in the early stages. UUuuughh! Prayers and blessings to you,Rojas5915 wrote: Odd, some years ago when I was with Kaiser, they told me the same thing; I had a long history of the MS diagnosis with Kaiser, and going clear back to age 19, and had had many positive MRIs since then. SO, I left

Kaiser, and my neurologist ordered a new MRI, and it was a "no-brainer," pardon the pun; plaques all over the place, and lots of comments in the report about the fact that this could only be from long-standing Multiple Sclerosis; they had scanned my head, neck, upper back and there were HEAPS of lesions on the brain-stem. That was back in the days when you could get a copy of the MRI and the report for free; now every hos pital in California charges $25.00 per page, and up, even if you are dirt poor! I did send it all to the neuro-guy at Kaiser--just out of some need to set "the record" straight. One does wonder, often and for long. . . .Love to you, ,

n MS or not-MS? Hi Challis,I didn't address your point in the last email about your dr. saying that you don't have MS.That is what my neurologist told me for over 11 years. They always said that I don't have MS but they will treat me for the symptoms since they are close to MS. Then one time I was in the hospital and a

resident came in to see me and I asked about the MRI and he said that it was the same as it was six months earlier with the visible MS lesions. That was the first time I had ever heard that there really was evidence of my MS. I don't know why they hid it from me. It was a horrible medical group (Kaiser here in CA)but they did. I eventually switched medical groups and my neuro now says that I definately have MS.But here I sit 15 years later and for over 11 of them I kept thinking that this was possibly all in my mind. I didn't know what to do. Then everyone in my life kept coming up with other things than MS. But in the last couple of years I've been working to accept it and to learn more about it since I was in the dark about MS for over a decade.Have you gotten second opinions? Can you share more about your story?Thanks- you are in my prayers,

Get your email and more, right on the new Yahoo.com

August 30, 2006

I think Yahoo is playing with my email again, or I've deleted without knowing. Surely it isn't Yahoo. LOL I'm missing originals, so am replying to three emails at once, all contained in this one post. ) I am so sorry for both of your experiences at Kaiser. Such "treatment" is infuriating and sorrowful. {{{{{{{{Hugs}}}}}}}} This did remind me of my Neuro, though. It was something he'd said during my follow-up, while he was conciving me nothing I felt was real. lol Oh and was I torqued over the comment! Such dismisal and disregard for a person's physical and emotional health. Anyway, this Neuro is fairly new to the scene, but came with high praise and a background I liked. Heh, and I'd worried and worked to try to find a doctor who wouldn't be a weenie. lol He'd just

completed two MS Fellowships at the Mayo in Rochester. Hey, not bad. Yet, clearly he didn't allow his education to stand in the way. <weg> He told me that studies have proven that when patients are told they do not have MS, their symptoms disappear. <insert nasty cuss wordy name here> LOL I've joked that I'm still waiting for my symptoms to disappear. I think some of it was hope that maybe it was in my head, maybe it was some strange empathetic response to my Mother's MS. LOL It wasn't. <g> I wondered if this was Kaiser's approach to the two of you and to others heard of. Clearly there was MS, history and lesions and all. Yet to be told it wasn't there? Oh, how very wrong that was! I wonder if they've changed. Challis

Deao wrote: Yes, Kaiser was interesting! The other odd thing was I was seeing the head of neurology and every time I was having an exacerbation ---- he was never able to see me. In all the years I was with Kaiser he never once saw me during an attack. I'd call his office and the nurse would tell me that I just needed to go to ER and they'd call him for advice. Then they'd put me either on prednisone or admit me and give me solu-medrol. When I

went to my current neuro he said I was the third patient to come to him within a couple of months from Kaiser that we were all told we didn't have MS and no meds given (Betaseron, etc) and we all HAD MS. Suspcious huh? I wonder how many others are being ignored because it's not a matter of misdiagnosed but more an issue of cover-up so that they don't have to give the care required. Totally unethical. How much did you and I lose because we weren't treated properly in the early stages. UUuuughh! Prayers and blessings to you,Rojas5915 <Rojas5915Comcast (DOT) net> wrote: Odd, some years ago when I was with Kaiser, they told me the same thing; I had a long

history of the MS diagnosis with Kaiser, and going clear back to age 19, and had had many positive MRIs since then. SO, I left Kaiser, and my neurologist ordered a new MRI, and it was a "no-brainer," pardon the pun; plaques all over the place, and lots of comments in the report about the fact that this could only be from long-standing Multiple Sclerosis; they had scanned my head, neck, upper back and there were HEAPS of lesions on the brain-stem. That was back in the days when you could get a copy of the MRI and the report for free; now every hos pital in California charges $25.00 per page, and up, even if you are dirt poor! I did send it all to the neuro-guy

at Kaiser--just out of some need to set "the record" straight. One does wonder, often and for long. . . .Love to you, , n MS or not-MS? Hi Challis,I didn't address your point in the last email about your dr. saying that you don't have MS.That is what my neurologist told me for

over 11 years. They always said that I don't have MS but they will treat me for the symptoms since they are close to MS. Then one time I was in the hospital and a resident came in to see me and I asked about the MRI and he said that it was the same as it was six months earlier with the visible MS lesions. That was the first time I had ever heard that there really was evidence of my MS. I don't know why they hid it from me. It was a horrible medical group (Kaiser here in CA)but they did. I eventually switched medical groups and my neuro now says that I definately have MS.But here I sit 15 years later and for over 11 of them I kept thinking that this was possibly all in my mind. I didn't know what to do. Then everyone in my life kept coming up with other things than MS. But in the last couple of years I've been working to accept it and to learn more about it since I was in the dark about MS for over a

decade.Have you gotten second opinions? Can you share more about your story?Thanks- you are in my prayers, Get your email and more, right on the new Yahoo.com

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

August 30, 2006

Hi,……well, my son works for Kaiser,

and the clinic he is at he says they are really great, and his doctor is good.

BUT…………. he was referred to a Physiatrist to evaluate

his car injuries, and what that Dr. told him was a load of crap. I think as

many of the health care facilities there are regardless of whether its Kaiser or not are about the money. Raising health care

costs, malpractice, and the cost of supplies, etc. all factor in. I’ve

been to so many “arrogant” Dr’s in my lifetime, I’d

rather not see any more as long as I live. But….how do you know ahead a

time. Like the one my son saw. He said he looked at all his x-rays, CT scans,

and he couldn’t see anything wrong with him. He said if he would lose

weight, and then pinched his belly, and said “get rid of this”, and

your back wouldn’t hurt. Well he completely disregarded the fact that he

got pretty banged up from the accident, which affected his neck. Didn’t even address that. Zeroed right in on the

little paunch he has and chalked everything up to that!! If you look at his

pictures over in the group photo section you will see he is NOT obese. The Dr.

said he was “morbidly obese”! I looked that up and in order to

qualify as MO you have to be 100 lbs over your ideal weight.

So he went away feeling really discouraged because he was hoping for some

answers to his constant pain, and the tingling and numbness he feels in his

feet. That Dr. also told him he didn’t have scoliosis, which he was dx’ed

with it as a child, but the Dr. said he grew out of it? WHAT??? How do you grow

out of scoliosis? Everything I’ve read says if it isn’t treated

during childhood, it gets worse during adulthood. We were told he had a mild

case so they didn’t treat it. but that doesn’t

mean he doesn’t have it now? and that certainly

can cause some of his spine problems. He fits many of the symptoms of adult

scoliosis. But apparently the x-rays, if the Dr. even looked at them didn’t

show any abnormalities. They haven’t done an MRI to see what is causing his

“new” migraine headaches. He NEVER had headaches before the

accident. Plus awhile back unrelated to this accident he had x-rays that showed

herniated discs in his lower back, so what happened to that? Did he outgrow

those too?

So all that Dr. did was “arrogantly” tell

him to join the YMCA and lose weight. [as if he can

afford the Y]

Anyhow, he is a Kaiser Dr.,

and I know if they don’t think any other tests are warranted, they won’t

order them. It’s all about saving them money. They are an HMO, so I guess

co-pays that are so low are the trade-off. But, unfortunately at the expense of

the patients care sometimes.

Smiles, Jackie J

From: MSersLife [mailto:MSersLife ] On Behalf Of Smyelin groovy

Sent: Wednesday, August 30, 2006 2:30 PM

To: MSersLife

Subject: Re: MS or

not-MS?

I think Yahoo is playing with my email again, or I've deleted without

knowing. Surely it isn't Yahoo. LOL

I'm missing originals, so am replying to three emails at once, all

contained in this one post. )

I am so sorry for both of your experiences at Kaiser. Such

" treatment " is infuriating and sorrowful. {{{{{{{{Hugs}}}}}}}}

This did remind me of my Neuro, though. It was something he'd

said during my follow-up, while he was conciving me nothing I felt was

real. lol Oh and was I torqued over the comment! Such

dismisal and disregard for a person's physical and emotional health.

Anyway, this Neuro is fairly new to the scene, but came with high

praise and a background I liked. Heh, and I'd worried and worked to try

to find a doctor who wouldn't be a weenie. lol & n! bsp; He'd just

completed two MS Fellowships at the Mayo in Rochester. Hey, not bad. Yet,

clearly he didn't allow his education to stand in the way. <weg>

He told me that studies have proven that when patients are told they do

not have MS, their symptoms disappear. <insert nasty cuss wordy name

here> LOL

I've joked that I'm still waiting for my symptoms to disappear. I

think some of it was hope that maybe it was in my head, maybe it was some

strange empathetic response to my Mother's MS. LOL It wasn't.

<g>

I wondered if this was Kaiser's approach to the two of you and to

others heard of. Clearly there was MS, history and lesions and

all. Yet to be told it wasn't there? Oh, how very wrong that

was! I wonder if they've changed.

Challis

Deao

<f8thfulmom> wrote:

Yes, Kaiser was interesting! The other odd thing was I was seeing

the head of neurology and every time I was having an exacerbation ---- he was

never able to see me. In all the years I was with Kaiser he never once

saw me during an attack. I'd call his office and the nurse would tell me

that I just needed to go to ER and they'd call him for advice. Then

they'd put me either on prednisone or admit me and give me solu-medrol.

When I went to my current neuro he said I was the third patient to come

to him within a couple of months from Kaiser that we were all told we didn't

have MS and no meds given (Betaseron, etc) and we all HAD MS.

Suspcious huh? I wonder how many others are being ignored because

it's not a matter of misdiagnosed but more an issue of cover-up so that they

don't have to give the care required. Totally unethical. How much

did you and I lose because we weren't treated properly in the early

stages. UUuuughh!

Prayers and blessings to you,

Rojas5915

<Rojas5915Comcast (DOT) net> wrote:

Odd, some years ago when I was with Kaiser, they told me the

same thing; I had

a long history of the MS diagnosis with Kaiser, and going

clear back to age 19,

and had had many positive MRIs since then. SO, I left

Kaiser, and my neurologist

ordered a new MRI, and it was a " no-brainer, "

pardon the pun; plaques all over the

place, and lots of comments in the report about the fact

that this could only be from long-standing Multiple Sclerosis; they had scanned

my head, neck, upper

back and there were HEAPS of lesions on the

brain-stem. That was back in the

days when you could get a copy of the MRI and the report for

free; now every hos

pital in California

charges $25.00 per page, and up, even if you are dirt poor! I did

se! nd it all to the neuro-guy at Kaiser--just out of some

need to set " the record "

straight. One does wonder, often and for long. . .

..Love to you, , n

MS or

not-MS?

Hi Challis,

I didn't address your point in the last email about your dr. saying

that you don't have MS.

That is what my neurologist! told me for over 11 years. They always

said that I don't have MS but they will treat me for the symptoms

since they are close to MS.

Then one time I was in the hospital and a resident came in to see me

and I asked about the MRI and he said that it was the same as it was

six months earlier with the visible MS lesions. That was the first

time I had ever heard that there really was evidence of my MS. I

don't know why they hid it from me. It was a horrible medical group

(Kaiser here in CA)but they did. I eventually switched medical groups

and my neuro now says that I definately have MS.

But here I sit 15 years later and for over 11 of them I kept thinking

that this was possibly all in my mind. I didn't know what to do.

Then everyone in my life kept coming up with other things than MS.

But in the last couple of years I've been working to accept it and to

learn more about it since I was in the dark about MS for over a decade.

Have you gotten second opinions? Can you share more about your story?

Thanks- you are in my prayers,

Get your email and more, right on the new

Yahoo.com

Yahoo! Messenger with Voice. Make

PC-to-Phone Calls to the US

(and 30+ countries) for 2¢/min or less.

August 30, 2006

Oh, Jackie I am so incredibly sorry. A Psych for his back pain. Oh how ridiculous and demeaning. I really feel for your son, Jackie. I wished he'd gotten better treatment and answers. Lose weight. What a butthead. HUGS, Challis Jackie Hanan wrote: Hi,……well, my son works for Kaiser, and the clinic he is at he says they are really great, and his doctor is good. BUT…………. he was referred to a Physiatrist to evaluate his car injuries, and what that Dr. told him was a load of crap. I think as many of the health care facilities there are regardless of whether its Kaiser or not are about the money. Raising health care costs, malpractice, and the cost of supplies, etc. all factor in. I’ve been to so many “arrogant” Dr’s in my lifetime, I’d rather not see any more as long as I live. But….how do you know ahead a time. Like the one my son saw. He said he looked at all his x-rays, CT scans, and he couldn’t see anything wrong with him. He said if he would

lose weight, and then pinched his belly, and said “get rid of this”, and your back wouldn’t hurt. Well he completely disregarded the fact that he got pretty banged up from the accident, which affected his neck. Didn’t even address that. Zeroed right in on the little paunch he has and chalked everything up to that!! If you look at his pictures over in the group photo section you will see he is NOT obese. The Dr. said he was “morbidly obese”! I looked that up and in order to qualify as MO you have to be 100 lbs over your ideal weight. So he went away feeling really

discouraged because he was hoping for some answers to his constant pain, and the tingling and numbness he feels in his feet. That Dr. also told him he didn’t have scoliosis, which he was dx’ed with it as a child, but the Dr. said he grew out of it? WHAT??? How do you grow out of scoliosis? Everything I’ve read says if it isn’t treated during childhood, it gets worse during adulthood. We were told he had a mild case so they didn’t treat it. but that doesn’t mean he doesn’t have it now? and that certainly can cause some of his spine problems. He fits many of the symptoms of adult scoliosis. But apparently the x-rays, if the Dr. even looked at them didn’t show any abnormalities. They haven’t done an MRI to see what is causing his “new” migraine headaches. He NEVER had headaches before the accident. Plus awhile back unrelated to this accident he had x-rays that showed herniated discs in his lower back, so what happened to that?

Did he outgrow those too? So all that Dr. did was “arrogantly” tell him to join the YMCA and lose weight. [as if he can afford the Y] Anyhow, he is a Kaiser Dr., and I know if they don’t think any other tests are warranted, they won’t order them. It’s all about saving them money. They are an HMO, so I guess co-pays that are so low are the trade-off. But, unfortunately at the expense of the patients care sometimes. Smiles, Jackie J From: MSersLife [mailto:MSersLife ] On Behalf Of Smyelin groovySent: Wednesday, August 30, 2006 2:30 PMTo: MSersLife Subject: Re: MS or not-MS? I think Yahoo is playing with my email again, or I've deleted without knowing. Surely it

isn't Yahoo. LOL I'm missing originals, so am replying to three emails at once, all contained in this one post. ) I am so sorry for both of your experiences at Kaiser. Such "treatment" is infuriating and sorrowful. {{{{{{{{Hugs}}}}}}}} This did remind me of my Neuro, though. It was something he'd said during my follow-up, while he was conciving me nothing I felt was real. lol Oh and was I torqued over the comment! Such dismisal and disregard for a person's physical and emotional health. Anyway, this Neuro is fairly new to the scene, but came with high praise and a background I liked. Heh, and I'd worried and worked to try to find a doctor who wouldn't be a weenie. lol & n! bsp; He'd just completed two MS Fellowships at the Mayo in Rochester. Hey, not bad. Yet, clearly he didn't allow his education to stand in the

way. <weg> He told me that studies have proven that when patients are told they do not have MS, their symptoms disappear. <insert nasty cuss wordy name here> LOL I've joked that I'm still waiting for my symptoms to disappear. I think some of it was hope that maybe it was in my head, maybe it was some strange empathetic response to my Mother's MS. LOL It wasn't. <g> I wondered if this was Kaiser's approach to the two of you and to others heard of. Clearly there was MS, history and lesions and all. Yet to be told it wasn't there? Oh, how very wrong that was! I wonder if they've changed. Challis Deao <f8thfulmom>

wrote: Yes, Kaiser was interesting! The other odd thing was I was seeing the head of neurology and every time I was having an exacerbation ---- he was never able to see me. In all the years I was with Kaiser he never once saw me during an attack. I'd call his office and the nurse would tell me that I just needed to go to ER and they'd call him for advice. Then they'd put me either on prednisone or admit me and give me solu-medrol. When I went to my current neuro

he said I was the third patient to come to him within a couple of months from Kaiser that we were all told we didn't have MS and no meds given (Betaseron, etc) and we all HAD MS. Suspcious huh? I wonder how many others are being ignored because it's not a matter of misdiagnosed but more an issue of cover-up so that they don't have to give the care required. Totally unethical. How much did you and I lose because we weren't treated properly in the early stages. UUuuughh! Prayers and blessings to you,Rojas5915 <Rojas5915Comcast (DOT) net> wrote: Odd, some years ago when I was with Kaiser, they told me the same thing; I had a long history of the MS diagnosis with Kaiser, and going clear back to age 19, and had had many positive MRIs since then. SO, I left Kaiser, and my

neurologist ordered a new MRI, and it was a "no-brainer," pardon the pun; plaques all over the place, and lots of comments in the report about the fact that this could only be from long-standing Multiple Sclerosis; they had scanned my head, neck, upper back and there were HEAPS of lesions on the brain-stem. That was back in the days when you could get a copy of the MRI and the report for free; now every

hos pital in California charges $25.00 per page, and up, even if you are dirt poor! I did se! nd it all to the neuro-guy at Kaiser--just out of some need to set "the record" straight. One does wonder, often and for long. . . .Love to you, , n MS or not-MS? Hi Challis,I didn't address your point in the last email about your dr. saying that you don't have MS.That is what my neurologist! told me for over 11 years. They always said that I don't have MS but they will treat me for the symptoms since they are close to MS. Then one time I was in the hospital and a resident came in to see me and I asked about the MRI and he said that it was the

same as it was six months earlier with the visible MS lesions. That was the first time I had ever heard that there really was evidence of my MS. I don't know why they hid it from me. It was a horrible medical group (Kaiser here in CA)but they did. I eventually switched medical groups and my neuro now says that I definately have MS.But here I sit 15 years later and for over 11 of them I kept thinking that this was possibly all in my mind. I didn't know what to do. Then everyone in my life kept coming up with other things than MS. But in the last couple of years I've been working to accept it and to learn more about it since I was in the dark about MS for over a decade.Have you gotten second opinions? Can you share more about your story?Thanks- you are in my prayers, Get your email and more, right on the new Yahoo.com Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

August 30, 2006