Re: Multiple sclerosis??? Me?!

December 16, 2004

Interesting how many scoliosis patients have migraines -- I recently heard that

migraines can be caused by strain from too much bending forwards at the neck -

they were talking about teaching of little kids, who frequently get migraines,

and also spend a lot of time bending to look at kid level desks - but I imagine

the same theory (the neck muscles keep pulling on the head, causing migraines)

might also be true for fusion patients with limited mobility....

There was an article in the Boston Globe a few Sundays ago about a doctor in

Cambridge (Carolyn Bernstein?) who is planning to open a migraine/ woman's

health clinic in the spring. Maybe she will see this connection and figure out

how to treat it!

Best of luck,

Carolyn

Re: Multiple sclerosis??? Me?!

Hi, Sharon!

I had to comment about your use of Fiorinal. I hadn't run into

someone else who took it for migraines. I do too. Works pretty well,

but interacts very weirdly with alcohol. But then I have such a low

tolerance for alcohol that being on ibuprofen would spark

an 'interaction'. So far only my GP has had any luck with the

migraines, and that in just prescribing the fiorenol. I think they

are related to the flatback, but no scoli dr has said so.

My thoughts and prayers are with you!!

Deb M.

1988 Harrington Rod with fusion T3-L4

2003 Dx Flatback

> Hm, that whiskey eggnog doesn't sound half bad, Loriann. It made

me laugh, though, because I had a SIP of wine on Thanksgiving at my

in-laws', after having taken Fiorinal for my migraine, and I got so

light-headed I needed to lie on the couch for a few minutes. I sure

didn't see THAT coming.

>

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

December 16, 2004

Sharon,

What a great way to look at it....if you've had MS for 20 years

untreated, and this is as bad as it's gotten, well...talk about

having a positive outlook!

It also reminded me of many years ago when I thought I really ought

to quit smoking and decided I would use one of the Nicotine patches.

I read all the side effects of the patch and was scared to death to

use them.....then I realized that all the side effects were the same

as smoking....heart attack, stroke etc....duh!

The good news was it scared me enough to just quit cold turkey!

The mind is a funny thing.....

Cam

December 16, 2004

Loriann,

Thank God for people like you! My gawd (!), I do believe you have a real

concept there of a really new board game! If only you could take all the

things you mentioned to me, throw them into the computer, and let it spit out

the

whole thing. I say that because I once had a boss who thought that I could

do things like that with the computer, if she just gave me a bunch of facts or

figures! But, the difference it that I think you really could do it!

In our situations, it is so important to have a sense of humor! But == I

still think you could do this! So there!

Carole

December 16, 2004

Hi Sharon:

Sorry to hear about what you're going through, in waiting on your test

results to rule out MS. I haven't had the chance to read through all of the

recent MS posts, so I hope I haven't missed anything, ie. will try not to

duplicate any info. here.

My sister does have MS (for 12 yrs. since diagnosis) and just told me that

the FDA approved a new drug called Antegren at the end of November. She

forwarded along the research and approval data to me, and it sounds more

promising than any other treatment to date. She will begin the Antegren on Dec.

14th (prescribed by her neurologist), and was told it is even more effective for

those people who are newly diagnosed.

Just wanted to pass that along, in the event the information does become

useful to you.

Keeping you in thoughts & prayers,

Martha

Sharon Green <sharon.green18@...> wrote:

Thanks, Deb.

Thanks for telling me that about the Fiorinal. I thought that was the reason I

got light-headed, and now I won't be wondering if it was another possible

symptom of MS.

Yeah, that's funny about back doctors. They never like to admit symptoms are

from our backs, while other doctors want to blame everything on the scoliosis.

Seems rather like passing the buck to me.

Sharon

Re: Multiple sclerosis??? Me?!

Hi, Sharon!

I had to comment about your use of Fiorinal. I hadn't run into

someone else who took it for migraines. I do too. Works pretty well,

but interacts very weirdly with alcohol. But then I have such a low

tolerance for alcohol that being on ibuprofen would spark

an 'interaction'. So far only my GP has had any luck with the

migraines, and that in just prescribing the fiorenol. I think they

are related to the flatback, but no scoli dr has said so.

My thoughts and prayers are with you!!

Deb M.

1988 Harrington Rod with fusion T3-L4

2003 Dx Flatback

> Hm, that whiskey eggnog doesn't sound half bad, Loriann. It made

me laugh, though, because I had a SIP of wine on Thanksgiving at my

in-laws', after having taken Fiorinal for my migraine, and I got so

light-headed I needed to lie on the couch for a few minutes. I sure

didn't see THAT coming.

>

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

December 16, 2004

Thank you, Martha. I hope the new drug really helps your sister!

Re: Multiple sclerosis??? Me?!

Hi, Sharon!

I had to comment about your use of Fiorinal. I hadn't run into

someone else who took it for migraines. I do too. Works pretty well,

but interacts very weirdly with alcohol. But then I have such a low

tolerance for alcohol that being on ibuprofen would spark

an 'interaction'. So far only my GP has had any luck with the

migraines, and that in just prescribing the fiorenol. I think they

are related to the flatback, but no scoli dr has said so.

My thoughts and prayers are with you!!

Deb M.

1988 Harrington Rod with fusion T3-L4

2003 Dx Flatback

> Hm, that whiskey eggnog doesn't sound half bad, Loriann. It made

me laugh, though, because I had a SIP of wine on Thanksgiving at my

in-laws', after having taken Fiorinal for my migraine, and I got so

light-headed I needed to lie on the couch for a few minutes. I sure

didn't see THAT coming.

>

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

December 16, 2004

Isn't it, though! :^)

Belated congrats on kicking the coffin nails!

Re: Multiple sclerosis??? Me?!

Sharon,

What a great way to look at it....if you've had MS for 20 years

untreated, and this is as bad as it's gotten, well...talk about

having a positive outlook!

It also reminded me of many years ago when I thought I really ought

to quit smoking and decided I would use one of the Nicotine patches.

I read all the side effects of the patch and was scared to death to

use them.....then I realized that all the side effects were the same

as smoking....heart attack, stroke etc....duh!

The good news was it scared me enough to just quit cold turkey!

The mind is a funny thing.....

Cam

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

December 16, 2004

Re: The new drug for MS

Actually, upon FDA approval, the FDA made Biogen rename Antegren " Tysabri " .

They felt the name Antegren could be too easily confused with drugs of a similar

name. It's supposed to be even more effective than the previously available

drugs. The people I have met who were on it in the trials are very happy with

the results. Hope your sister has a similar experience.

Joanne

December 16, 2004

Dear Sharon,

I'm so sorry to hear about the possibility of MS, I hope it turns

out not to be so. Please know I'm thinking of you and sending

positive, concerned thoughts and well wishes.

All my best, Dianne S.

> Hello, friends.

>

> Some of you may have noticed that I haven't posted much lately

(instead of being my usual loquatious self). I don't usually let

myself get so behind on posts, but I've been distracted lately.

>

> In a recent post I said something about my going for an MRI for a

little eye trouble I've been having, which I expected to be minor.

So, last Wednesday I had my first ride into the MRI rock concert

machine. I had the panic button in my hands which were folded on my

chest, and as I entered that casket-like contraption all I could

think was that they should have shaped the panic button like a calla

lily.

>

> But I did a good job of holding still, exept my eyes, which were

twitching a mile a minute. I was quite thankful to be told I didn't

need a contrast injection, and another thrilling ride.

>

> They made copies of my films for me, and sent me merrily home. I

showed my films to my massage therapist later that morning. " Hey,

look, a, I now can prove that I have a brain! "

>

> Thursday afternoon I was a bit floored to receive a call from my

primary doctor. She says they found some small lesions on my brain,

which could indicate something like multiple sclerosis, and I need

to see a neurologist.

>

> Since then I've been reading up on MS, and am realizing that it

might explain some symptoms I've been blaming on scoliosis and

flatback. At one time I also suspected fibromyalgia. Some of the

symptoms go back as far as 20 years.

>

> I will be seeing a neurologist on January 6. Obviously, I am

flooded with emotions. Part of me hopes for an MS diagnosis, as it

may lead to better medication to help with the pain and spasming.

There is also medication available to slow the disease progression.

And if it's not MS, what is it? Lesions on the brain are never a

good sign, are they?

>

> I will greatly appreciate any and all prayers and good wishes.

>

> Thanks.

>

> Sharon

>

December 16, 2004

Thank you, Dianne. And how is your healing coming along?

Re: Multiple sclerosis??? Me?!

Dear Sharon,

I'm so sorry to hear about the possibility of MS, I hope it turns

out not to be so. Please know I'm thinking of you and sending

positive, concerned thoughts and well wishes.

All my best, Dianne S.

> Hello, friends.

>

> Some of you may have noticed that I haven't posted much lately

(instead of being my usual loquatious self). I don't usually let

myself get so behind on posts, but I've been distracted lately.

>

> In a recent post I said something about my going for an MRI for a

little eye trouble I've been having, which I expected to be minor.

So, last Wednesday I had my first ride into the MRI rock concert

machine. I had the panic button in my hands which were folded on my

chest, and as I entered that casket-like contraption all I could

think was that they should have shaped the panic button like a calla

lily.

>

> But I did a good job of holding still, exept my eyes, which were

twitching a mile a minute. I was quite thankful to be told I didn't

need a contrast injection, and another thrilling ride.

>

> They made copies of my films for me, and sent me merrily home. I

showed my films to my massage therapist later that morning. " Hey,

look, a, I now can prove that I have a brain! "

>

> Thursday afternoon I was a bit floored to receive a call from my

primary doctor. She says they found some small lesions on my brain,

which could indicate something like multiple sclerosis, and I need

to see a neurologist.

>

> Since then I've been reading up on MS, and am realizing that it

might explain some symptoms I've been blaming on scoliosis and

flatback. At one time I also suspected fibromyalgia. Some of the

symptoms go back as far as 20 years.

>

> I will be seeing a neurologist on January 6. Obviously, I am

flooded with emotions. Part of me hopes for an MS diagnosis, as it

may lead to better medication to help with the pain and spasming.

There is also medication available to slow the disease progression.

And if it's not MS, what is it? Lesions on the brain are never a

good sign, are they?

>

> I will greatly appreciate any and all prayers and good wishes.

>

> Thanks.

>

> Sharon

>

December 18, 2004

Deb,

Did you see my post that my doctors think my migraines are from my neck?

And that I have started therapy on that portion of the neck?

I'll keep you all posted.

Sincerely,

Carole

December 18, 2004

Oh Sharon, I am so sorry to hear your latest news.....yet another

bump in the road, as they say. I certainly hope for your sake that

they do not determine that it's MS. If, however, they do determine

that it is MS, please know that I know a woman (she's actually my

brother's best friend's wife) who was diagnosed with it years

ago....over 20 years ago and there has been no progression. She

lives a normal life (as she did prior to the diagnosis). Please know

that I will be thinking of you as you go through the necessary steps.

I had been wondering where you were and even asked Carole as I too

took a break from the MB for a while this summer/fall. I'm glad

you're back and hope things work out well.

Michele

> Hello, friends.

>

> Some of you may have noticed that I haven't posted much lately

(instead of being my usual loquatious self). I don't usually let

myself get so behind on posts, but I've been distracted lately.

>

> In a recent post I said something about my going for an MRI for a

little eye trouble I've been having, which I expected to be minor.

So, last Wednesday I had my first ride into the MRI rock concert

machine. I had the panic button in my hands which were folded on my

chest, and as I entered that casket-like contraption all I could

think was that they should have shaped the panic button like a calla

lily.

>

> But I did a good job of holding still, exept my eyes, which were

twitching a mile a minute. I was quite thankful to be told I didn't

need a contrast injection, and another thrilling ride.

>

> They made copies of my films for me, and sent me merrily home. I

showed my films to my massage therapist later that morning. " Hey,

look, a, I now can prove that I have a brain! "

>

> Thursday afternoon I was a bit floored to receive a call from my

primary doctor. She says they found some small lesions on my brain,

which could indicate something like multiple sclerosis, and I need to

see a neurologist.

>

> Since then I've been reading up on MS, and am realizing that it

might explain some symptoms I've been blaming on scoliosis and

flatback. At one time I also suspected fibromyalgia. Some of the

symptoms go back as far as 20 years.

>

> I will be seeing a neurologist on January 6. Obviously, I am

flooded with emotions. Part of me hopes for an MS diagnosis, as it

may lead to better medication to help with the pain and spasming.

There is also medication available to slow the disease progression.

And if it's not MS, what is it? Lesions on the brain are never a

good sign, are they?

>

> I will greatly appreciate any and all prayers and good wishes.

>

> Thanks.

>

> Sharon

>

December 18, 2004

Thank you for the comforting words, Michele. I'm glad to see you haven't left

us.