Re: Multiple sclerosis??? Me?!

[Guest guest]

Sharon - I don't blame you for being scared - I would be, too, particularly

with having to wait for answers. That seems to be the hardest part when I've

had test results pending. As I'm sure your primary doctor told you, there can

be many causes of brain lesions, including migraines and high blood pressure.

I found out after having an MRI done that I had tiny " white spots " in my

brain caused by migraines I've had since my 20s (according to my neurologist).

Last January, news regarding brain lesions caused by migraines over time was

top medical news.

Then a friend of mine who also has ongoing severe migraines was told by her

neurologist she had " dead spots " in her brain and later clarified these were

" small lesions. " I'm not sure " white " or " dead " spots as terms are any

improvement over " lesions. " You have some time to start writing down every

question

that you come up with during your research between now and your neurologist

appointment in January - that's the advantage of having some time to prepare,

and I know others on this board will have some great ideas about questions

to ask - please keep us informed! Jennie

[Guest guest]

Of course I'll pray! Best wishes, Carolyn

Multiple sclerosis??? Me?!

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

[Guest guest]

Hi, Jennie.

No, I didn't know lesions could be caused by migraines! That is very important

news, as I have had migraines on-and-off since 1992.

The event which led to the MRI was what I first took to be a migraine, and may

well have been. It didn't follow my usual migraine pattern, in which it runs

its course over a few hours. It lasted several days, and the visual disturbance

was only in one eye.

After the other symptoms were completely gone I was still left with some vision

loss in my right eye. I describe it as looking through a dirty window. A

visual field test confirmed that I've lost some peripheral vision in that eye,

but as far as I know does not explain the reduced light and color perception.

The reduced color perception is part of optic neuropathy, though, which can be

an MS symptom. So it may still come back to MS.

Thanks a lot for the info and encouragement!

Sharon

Re: Multiple sclerosis??? Me?!

Sharon - I don't blame you for being scared - I would be, too, particularly

with having to wait for answers. That seems to be the hardest part when I've

had test results pending. As I'm sure your primary doctor told you, there can

be many causes of brain lesions, including migraines and high blood pressure.

I found out after having an MRI done that I had tiny " white spots " in my

brain caused by migraines I've had since my 20s (according to my

neurologist).

Last January, news regarding brain lesions caused by migraines over time was

top medical news.

Then a friend of mine who also has ongoing severe migraines was told by her

neurologist she had " dead spots " in her brain and later clarified these were

" small lesions. " I'm not sure " white " or " dead " spots as terms are any

improvement over " lesions. " You have some time to start writing down every

question

that you come up with during your research between now and your neurologist

appointment in January - that's the advantage of having some time to prepare,

and I know others on this board will have some great ideas about questions

to ask - please keep us informed! Jennie

[Guest guest]

Oh my gosh--dead spots in the brain. No wonder I can't think worth a

darn after a two day migraine! Sorry--that is the end of my ability

to compose right now! Still slightly " brain damaged. " LOL

Txbluebelle

> Sharon - I don't blame you for being scared - I would be, too,

particularly

> with having to wait for answers. That seems to be the hardest part

when I've

> had test results pending. As I'm sure your primary doctor told

you, there can

> be many causes of brain lesions, including migraines and high

blood pressure.

> I found out after having an MRI done that I had tiny " white spots "

in my

> brain caused by migraines I've had since my 20s (according to my

neurologist).

> Last January, news regarding brain lesions caused by migraines

over time was

> top medical news.

>

> Then a friend of mine who also has ongoing severe migraines was

told by her

> neurologist she had " dead spots " in her brain and later clarified

these were

> " small lesions. " I'm not sure " white " or " dead " spots as terms are

any

> improvement over " lesions. " You have some time to start writing

down every question

> that you come up with during your research between now and your

neurologist

> appointment in January - that's the advantage of having some time

to prepare,

> and I know others on this board will have some great ideas about

questions

> to ask - please keep us informed! Jennie

>

>

>

[Guest guest]

Hi Sharon!

I'm so sorry to hear of the ordeal you have been going through.

I hope everything goes toward a positive direction for you, my

prayers are with you.

Franca

> 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

>

>

>

>

[Guest guest]

Hi Sharon - I have been wondering about you. You have hardly posted

as of late and I have been rather concerned. I also know a couple of

people whom were found to have " lesions " on their brains. One never

really received an explanation, the other it was confirmed that they

were caused by her migraines. So, hopefully it will turn out to be

just a little " reaction " of sorts to horrific headaches. Please know

that I am thinking of you, please keep us updated.

[Guest guest]

Hi Sharon,

Just wanted to add my good wishes and some thoughts. You are smart

to get this new symptom and MRI finding thoroughly evaluated and to

realize that there's a benefit from early intervention. Sure hope

the neurologist will provide you with helpful information and

advice. The standard drill applies: Take someone with you to the

appt., especially if you are (like I always am) too nervous to be

able to absorb what they are saying. I can't remember if you've been

seen recently by a flatback surgeon, but if yes, it might be wise to

send the MRI and neurologist reports to him, and perhaps have the two

doctors confer. I did that when I was trying to determine which of

my symptoms were caused by the flatback and which were more likely

caused by my other spine problem, syringomyelia -- I cringed at your

post, remembering that I was informed of that particular diagnosis by

one of those lovely MRI result phone calls, like the one that floored

you. I remember being not totally surprised to find out that

something else was wrong with me, after feeling so not good for so

long.

Speaking of that, I forget, have you ever had an MRI of the upper

portion of your spine?

The Feisties are pulling for you, as always, Sharon. Take care, hang

in there and hope you'll keep us posted on how the neurologist visit

goes,

loriann

> 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

>

>

>

>

[Guest guest]

Dear Sharon,

Prayers and good wishes. YOU GOT 'EM!

SnT

[Guest guest]

Thanks, Loriann

I second the business of not being surprised to learn that something else is

wrong with me. That's a bummer about the syringomyelia.

No, I'm still trying to prod myself to go see Dr. Rand. Maybe this will help.

I haven't had any other MRI scans, and this one only shows the brain,

unfortunately, as I suspect there's plenty going on in my neck.

I'll be sure to keep you folks updated. I see the neurologist on Jan. 6, so

I've got the whole holiday season to play hypochondriac.

Sharon

Re: Multiple sclerosis??? Me?!

Hi Sharon,

Just wanted to add my good wishes and some thoughts. You are smart

to get this new symptom and MRI finding thoroughly evaluated and to

realize that there's a benefit from early intervention. Sure hope

the neurologist will provide you with helpful information and

advice. The standard drill applies: Take someone with you to the

appt., especially if you are (like I always am) too nervous to be

able to absorb what they are saying. I can't remember if you've been

seen recently by a flatback surgeon, but if yes, it might be wise to

send the MRI and neurologist reports to him, and perhaps have the two

doctors confer. I did that when I was trying to determine which of

my symptoms were caused by the flatback and which were more likely

caused by my other spine problem, syringomyelia -- I cringed at your

post, remembering that I was informed of that particular diagnosis by

one of those lovely MRI result phone calls, like the one that floored

you. I remember being not totally surprised to find out that

something else was wrong with me, after feeling so not good for so

long.

Speaking of that, I forget, have you ever had an MRI of the upper

portion of your spine?

The Feisties are pulling for you, as always, Sharon. Take care, hang

in there and hope you'll keep us posted on how the neurologist visit

goes,

loriann

> 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

>

>

>

>

[Guest guest]

Thanks, SnT, and everyone else who's lending prayers and good wishes.

:^)

Re: Multiple sclerosis??? Me?!

Dear Sharon,

Prayers and good wishes. YOU GOT 'EM!

SnT

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

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

advertised products.

[Guest guest]

Sharon,

I am SO sorry that you are going through this! Just wanted you to know that

I also went through the whole thing. And, believe it or not, my doctor told

me that, if I did have it, it would make very little difference to my

situation. The medications are the same, the symptoms are very similar, etc.

Whatever the progression of tests was, I got down to the very last one when

they

decided that I did not have MS. I have a bunch of other things, but not MS.

But, for instance, Baclofen is one of the big drugs for MS, and many of us

have taken it or are currently taking it.

Please do not think I make light of the situation. I feel very deeply for

you and I care for you. I am, in my own stumbling way, trying to make you

feel better. Gosh, scoliosis and flatback are enough for one small person,

aren't they?

Hang in there. Wait til you hear all. And know that you have lots of

friends out here rooting for you. You are very special!

Love,

Carole M.

[Guest guest]

Dear Sharon. You have my prayers. I am praying that you don't have MS! As of

this date, there is no cure for MS.

God Bless you,

Joyce

Multiple sclerosis??? Me?!

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

[Guest guest]

Sharon,

In my earlier post, I forgot to mention that I have an appointment with Dr.

Rand on 1//5/05! My neurologist insisted I see him, and his office was most

helpful. Since we are starting at about the same time, maybe we'll run into

one another yet again at NEBH!

On top of that, my left hand surgery is scheduled for 1/11/05.

I am praying for you and hoping that you will find that you do not have MS.

Love,

Carole M.

[Guest guest]

Loriann,

Eavesdropper that I am, I loved your idea for a board game called

" Flatbackers " . That is hysterical! But you know, it could also work!

Work on that!

Carole M.

[Guest guest]

Sharon...

You must be frantic thinking you have to wait weeks to really start

getting to the bottom of this. I am so sorry you had to get this

news just in time for the holidays....

Hopefully, with good doctors. you can get to the bottom of this and

get yourself to a improved state of health.

You sound like you are taking it in stride....but if it was me, I

would be feeling the hot tears of pity rolling down my cheeks asking

once again, " Why me? " .

It's not fair and I am sorry that you have to go through this.

Best Wishes, Cam

[Guest guest]

Sharon,

Eh, instead of playing hypochondriac, why don't you make yourself a

great big glass of eggnog with a shot of whiskey in it. Okay, I

admit that might be really bad advice because I have no idea what

pain meds you are on! It's the thought that counts, right!!

I truly hope the holiday season will be at least somewhat successful

in distracting you from the more worrisome things......

Best wishes again,

loriann

P.S. Some day when we are feeling better, perhaps we should work

together on a " Board Game of Flatback " !

> Thanks, Loriann

>

> I second the business of not being surprised to learn that

something else is wrong with me. That's a bummer about the

syringomyelia.

>

> No, I'm still trying to prod myself to go see Dr. Rand. Maybe this

will help. I haven't had any other MRI scans, and this one only

shows the brain, unfortunately, as I suspect there's plenty going on

in my neck.

>

> I'll be sure to keep you folks updated. I see the neurologist on

Jan. 6, so I've got the whole holiday season to play hypochondriac.

>

> Sharon

[Guest guest]

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.

Sharon

Re: Multiple sclerosis??? Me?!

Sharon,

Eh, instead of playing hypochondriac, why don't you make yourself a

great big glass of eggnog with a shot of whiskey in it. Okay, I

admit that might be really bad advice because I have no idea what

pain meds you are on! It's the thought that counts, right!!

I truly hope the holiday season will be at least somewhat successful

in distracting you from the more worrisome things......

Best wishes again,

loriann

P.S. Some day when we are feeling better, perhaps we should work

together on a " Board Game of Flatback " !

> Thanks, Loriann

>

> I second the business of not being surprised to learn that

something else is wrong with me. That's a bummer about the

syringomyelia.

>

> No, I'm still trying to prod myself to go see Dr. Rand. Maybe this

will help. I haven't had any other MRI scans, and this one only

shows the brain, unfortunately, as I suspect there's plenty going on

in my neck.

>

> I'll be sure to keep you folks updated. I see the neurologist on

Jan. 6, so I've got the whole holiday season to play hypochondriac.

>

> Sharon

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

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

advertised products.

[Guest guest]

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.

>

[Guest guest]

> > 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

> > Dear Sharon, I along with alot of other members of the group

will be hoping & praying that this is not anything serious & by the

time they do the MRI they will be gone! Have you had many if any

myelograms? I have had 8, and especially at the 1st one in 76 with

Pantopaque they tilted the table so my head was almost on the floor

and it felt like my head was going to explode from the pressure. I

do have fears that one day they will find a arachnoid cyst in my

brain caused by the oil based dye, but so far so goodPraying &

sending all positive vibes that it is nothing.

Love,

Diane B

> >

> >

> >

[Guest guest]

Carole M.,

If you knew me better, you'd know not to encourage me! So far, I've

figured out that the board game should be some sort of combination of

the games Chutes and Ladders and The Game of Life. Maybe designed

like a big mountain for the patient to climb, with pitfalls and wrong

turns along the way with names like MS, hand surgery, syringomyelia,

ignorant doctors, rude receptionists, etc. But there are PLENTY of

ladders, move ahead spaces cards, and boost cards courtesy of

Feisty ScolioFlatbackers Group, Delphi Salvaged Sisters of Scoliosis

Group, NSF Forum, Rasche , Mina, Suzy

Habibi, Racine, Kathleen Wigham, other Feisties, various names

of knowledgable caring doctors and chore-doing husbands, etc. At the

very top is a pain-free spine that lasts a long lifetime. What do

you think? (Hmm, now I'm wondering if someone else didn't post a

version of this a while back......?)

Seriously, I wish you good luck with your doctor visit and with your

hand surgery. We'll look forward to hearing all about them,

loriann

> Loriann,

> Eavesdropper that I am, I loved your idea for a board game called

> " Flatbackers " . That is hysterical! But you know, it could also

work!

> Work on that!

>

> Carole M.

[Guest guest]

Wow, thanks, Joyce and Carole.

I do wonder about Baclofen. I've taken Flexeril, which is also a muscle

relaxant, but not Baclofen. For some reason my current doctor seemed to prefer

Elavil and Celebrex to Flexeril. I can't help wondering how well Baclofen would

work for my chronic muscle tension and pain.

Re: Multiple sclerosis??? Me?!

Sharon,

I am SO sorry that you are going through this! Just wanted you to know that

I also went through the whole thing. And, believe it or not, my doctor told

me that, if I did have it, it would make very little difference to my

situation. The medications are the same, the symptoms are very similar, etc.

Whatever the progression of tests was, I got down to the very last one when

they

decided that I did not have MS. I have a bunch of other things, but not MS.

But, for instance, Baclofen is one of the big drugs for MS, and many of us

have taken it or are currently taking it.

Please do not think I make light of the situation. I feel very deeply for

you and I care for you. I am, in my own stumbling way, trying to make you

feel better. Gosh, scoliosis and flatback are enough for one small person,

aren't they?

Hang in there. Wait til you hear all. And know that you have lots of

friends out here rooting for you. You are very special!

Love,

Carole M.

[Guest guest]

Carole, you sure have a lot to deal with yourself! I'll make a note of your

upcoming surgery and keep you in my prayers as well.

Re: Re: Multiple sclerosis??? Me?!

Sharon,

In my earlier post, I forgot to mention that I have an appointment with Dr.

Rand on 1//5/05! My neurologist insisted I see him, and his office was most

helpful. Since we are starting at about the same time, maybe we'll run into

one another yet again at NEBH!

On top of that, my left hand surgery is scheduled for 1/11/05.

I am praying for you and hoping that you will find that you do not have MS.

Love,

Carole M.

[Guest guest]

Thanks so much for the support, Cam.

I did burst into tears when I first read up on the symptoms of MS, since I've

had some of them for up to 20 years. But then it occured to me that if I'd had

MS for 20 years there would probably be more than a few little lesions on my

brain.

I guess the best I can do is present my history, tests, and symptoms to the

neurologist, and let him sort things out.

Sharon

Re: Multiple sclerosis??? Me?!

Sharon...

You must be frantic thinking you have to wait weeks to really start

getting to the bottom of this. I am so sorry you had to get this

news just in time for the holidays....

Hopefully, with good doctors. you can get to the bottom of this and

get yourself to a improved state of health.

You sound like you are taking it in stride....but if it was me, I

would be feeling the hot tears of pity rolling down my cheeks asking

once again, " Why me? " .

It's not fair and I am sorry that you have to go through this.

Best Wishes, Cam

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

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

advertised products.

[Guest guest]

Ooh, that sounds great, Loriann. I want one. I especially like the chore-doing

husband one! (Mine surprised me recently by taking on some little chores like

feeding the bird and loading/unloading the dishwasher, without being asked!)

Sharon

Re: Multiple sclerosis??? Me?!

Carole M.,

If you knew me better, you'd know not to encourage me! So far, I've

figured out that the board game should be some sort of combination of

the games Chutes and Ladders and The Game of Life. Maybe designed

like a big mountain for the patient to climb, with pitfalls and wrong

turns along the way with names like MS, hand surgery, syringomyelia,

ignorant doctors, rude receptionists, etc. But there are PLENTY of

ladders, move ahead spaces cards, and boost cards courtesy of

Feisty ScolioFlatbackers Group, Delphi Salvaged Sisters of Scoliosis

Group, NSF Forum, Rasche , Mina, Suzy

Habibi, Racine, Kathleen Wigham, other Feisties, various names

of knowledgable caring doctors and chore-doing husbands, etc. At the

very top is a pain-free spine that lasts a long lifetime. What do

you think? (Hmm, now I'm wondering if someone else didn't post a

version of this a while back......?)

Seriously, I wish you good luck with your doctor visit and with your

hand surgery. We'll look forward to hearing all about them,

loriann

> Loriann,

> Eavesdropper that I am, I loved your idea for a board game called

> " Flatbackers " . That is hysterical! But you know, it could also

work!

> Work on that!

>

> Carole M.

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

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

advertised products.

[Guest guest]

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.