Re: Digest Number 920

March 10, 2001

Jeanie wrote:

(13) has been on Prozac (now at 40mg) for about 3 months. Is

SLEEPINESS a side-effect of Prozac? has been falling asleep some days

after school, and often doing homework. Tonight she fell asleep while

waiting for a couple favorite TV shows to come on. Sometimes I wonder if

she falls asleep to avoid things or because of depression. We had a rough

afternoon, with her making some bad choices after school (going to a school

dance without asking us, walking to a friends' house so we didn't know

where she was, etc.). She was particularly sleepy tonight -- falling

asleep waiting for dinner and falling asleep waiting for the shows. Is

this because of the Prozac, or because of the upset?

Jeanie,

My son feels sleepy on SSRI's, too. However, I also know he uses sleep to

counteract boring routines and after a hard afternoon. He says it is

utterly exhausting to have a " fit " of OCD. Sometimes he waits a day or

two, and then crashes asleep, sometimes it is more immediately.

March 21, 2001

Not in Juy Zeee though....... I wish...

> Message: 13

> Date: Tue, 20 Mar 2001 15:39:27 -0000

> From: pikeur@...

> Subject: Re: (OT) marajuana, how to get caught!

>

> You can get permission to legaly posess and smoke marijuana in some

> states, if your doctor says you need it (have aids, cancer or

> incurable pain) I'm sure there's something on the web about this...

>

> Theresa

>

April 19, 2001

In a message dated 4/19/01 12:08:21 PM Eastern Daylight Time,

bodyforlife writes:

<< OK guys, here's how I did. For lunch, I chose a veggie sandwich >>

Sounds like you did really good. Congratulations!

June 7, 2001

I think I already know the answer but I wanted to get clarification from

fellow CMT suffers, who have more experience with the disease, before I make

a final decision.

When I play golf now, even though I use a power cart, my legs & feet after an

hour or so get sore with a burning feeling. Is this the sensation that eats

at our muscles & nerves?

If so I will give up golf, a game I enjoy playing a great deal. Balance is

not too big a problem for me yet and the pain & discomfort I'm experiencing I

can play through but if it is doing the long range damage I suspect it is, I

will stop playing.

I realize a CMT specialist would give me a definite answer but I can get an

appointment to see him again until mid-Oct.

Appreciate input.

peter

June 7, 2001

Hello ,

Regarding the burning sensation. Does this happen only when playing golf? If

so your golf shoes may be the culprit.

If you were to go for a 30 minute walk do you experience the same burning?

As far as a definite answer from a CMT doctor? Good luck! CMT affects all of

us differently. I have virtually no muscle loss except some in my hands and

my lower legs. I have minor tingling in my hands and feet. IF I do a

strenuous hike my feet will always burn. I have a Dr. Scholl's footbath and

I soak my dogs for an hour or so and that helps. I also rub my feet with Bag

balm.

I play golf a couple of times a month and usually take a cart, in Southern

California on many public courses you must use a cart. It is supposed to

speed up play but it just generates more revenue. When I am lucky enough to

get an invite to a private club I usually walk. I am probably the only guy

you will see on the links with high top golf shoes. Six or seven years ago

Nike introduced a high top athletic type golf shoe with soft spikes, it went

over like a double cheeseburger at a Peta convention. I bought 2 pairs at

the Nike discount outlet.

As far as giving up the game I hope it does not come to that. Hang in there.

Regards,

BC

----- Original Message -----

From: <pmaher7777@...>

< >

Sent: Wednesday, June 06, 2001 8:32 PM

Subject: Re: [] Digest Number 920

> I think I already know the answer but I wanted to get clarification from

> fellow CMT suffers, who have more experience with the disease, before I

make

> a final decision.

> When I play golf now, even though I use a power cart, my legs & feet after

an

> hour or so get sore with a burning feeling. Is this the sensation that

eats

> at our muscles & nerves?

> If so I will give up golf, a game I enjoy playing a great deal. Balance

is

> not too big a problem for me yet and the pain & discomfort I'm

experiencing I

> can play through but if it is doing the long range damage I suspect it is,

I

> will stop playing.

> I realize a CMT specialist would give me a definite answer but I can get

an

> appointment to see him again until mid-Oct.

> Appreciate input.

>

> peter

>

June 8, 2001

when I was younger (that was about a 1000 yrs ago) my feet would burn when I

wore sneakers or any sole that would seem to draw my feet. Actually thats

how I discovered I had CMT. I found an inersole was the cure for me and I

stopped wearing sneakers and rubber soles.

E

June 8, 2001

What type of innersole ? I am just the opposite though, I seem to be

most comfy in rubber soled shoes.

Regards,

BC

----- Original Message -----

From: <jege6666@...>

< >

Sent: Friday, June 08, 2001 12:42 PM

Subject: Re: [] Digest Number 920

> when I was younger (that was about a 1000 yrs ago) my feet would burn

when I

> wore sneakers or any sole that would seem to draw my feet. Actually thats

> how I discovered I had CMT. I found an inersole was the cure for me and I

> stopped wearing sneakers and rubber soles.

> E

>

October 28, 2002

See the book Treating Epilepsy Naturally and also the s-Reiter

Clinic website. Check the FILES area online for this group.

mjh

In a message dated 10/28/02 8:02:16 AM Eastern Standard Time,

writes:

> From: " McHaffie " <nhoj@...>

> Subject: Myoclonic

>

> Hello all, I am 29 years old, and have had (diagnosed anyway) JME or

> Myoclonic epilepsy since my early teens. I have done a lot of research, but

> find conflicting information, but so far the norm has been that there is no

> surgical cure, and I was wondering if anyone has heard any info about the

> VNS system or non-medicated cures/help. I have been on Lamictal for the

> last 2 years and it has been a miracle compared to any other medication so

> far, however recently I have developed bad dizzy spells, tiredness, etc.

> And I am looking for a way out of medication. All meds I have been on

> before Lamictal caused me horrible health problems after a year or so of

> being on them, and I fear I may be running the course of Lamictal already.

> Any ideas?

>

> Thanks,

>

October 28, 2002

Hi ,

I had intractable seizures for many years. Ten years after brain

surgery failed, I got them under control, on my own with no drugs. I

have been seizure free for going on five years now. There is one

epilepsy clinic in the US that teaches people ways to control their

own seizures and to minimize or eliminate the need for drugs. This is

the s\Reiter Clinic in Santa , CA., as Lamar has probably

written to you. There is an article about the clinic and Dr. s

on my web page (http://www.indiana.edu/~pietsch/zoeseizure.html).

From there you can link to the clinic web site

(http://www.andrewsreiter.com) and write to Dr. s yourself.

Zoe

>

> See the book Treating Epilepsy Naturally and also the

s-Reiter

> Clinic website. Check the FILES area online for this group.

> mjh

>

> In a message dated 10/28/02 8:02:16 AM Eastern Standard Time,

> @y... writes:

>

> > From: " McHaffie " <nhoj@g...>

> > Subject: Myoclonic

> >

> > Hello all, I am 29 years old, and have had (diagnosed anyway) JME

or

> > Myoclonic epilepsy since my early teens. I have done a lot of

research, but

> > find conflicting information, but so far the norm has been that

there is no

> > surgical cure, and I was wondering if anyone has heard any info

about the

> > VNS system or non-medicated cures/help. I have been on Lamictal

for the

> > last 2 years and it has been a miracle compared to any other

medication so

> > far, however recently I have developed bad dizzy spells,

tiredness, etc.

> > And I am looking for a way out of medication. All meds I have

been on

> > before Lamictal caused me horrible health problems after a year

or so of

> > being on them, and I fear I may be running the course of Lamictal

already.

> > Any ideas?

> >

> > Thanks,

> >

>

October 29, 2002

Well, only one problem though... " The major types that are not responsive to

this treatment are Myoclonic, Lennox Gastaut, and infantile spasms. "

I found that on the s-Reiter webpage.

I'll keep looking though. Thanks.

Mine is supposedly Myoclonic.

October 19, 2004

In a message dated 10/18/2004 12:50:27 PM Eastern Daylight Time,

writes:

Re: Re: tnx

I'm type 2/3 and 51. No vent or anything like that, but live with a lot of

pain. I wouldn't change anything though. I feel very lucky and mostly blessed.

Love to all, Vickie in Atl.

Happy Halloween!! <

December 9, 2004

Martha, It was so good to hear about your positive outcome from your

Revision Surgery. To me it sounds like a MIRACLE, to be standing

upright & to be abel to walk a mile one month after 2 surgeries is

beyond my wildest hopes for myself after my Revision Surgery.

I was amazed that you did not have to go to a Rehab & that you do not

have to wear a brace.

I live in NE PA so I am having Dr Boachie-Adjei do the surgery. After

my examination with him & he studied all my films & after a few weeks I

recieved his report & I also need 2 operations, a few days to a wk apart

according to how I do.

He is going to do Osteotomies through the bk for the Fl Bk & then

through the front for a curve from T5 to L1 & a collapse of L2 onto L3 &

L3 onto L4.

I had an Ant/Post Fusion in 85 with bone grafts & Harrington Rods & I

was fused from L4 to my Sacrum. I was in a body cast for 3 mts & this

was for spondylolisthesis, unstable spine with one vertabrae over the

other.

Was the surgery very painful, were you given adequate medication, I am

so full of questions mainly because I have been through so many

operations.

I am really afraid to have this surgery, but when you cannot walk more

than a few feet without wishing you had a Little Rascal & have tears

rolling down your cheeks & feel like a jerk as people see you crying you

know you must have it done. I do have a Rolling & that does help

alot and it even has a seat but if I am alone I have alot of trouble

getting it in & out of the car.

Thank you for your post because it REALLY gave me a lift & took some of

my fear away.

Lorriann the best of luck on your trip to see Dr La Garrone, I hope you

have a safe trip & come bk with really good news. I found when we went

to see Dr Crandall in AZ that if you tell the airlines & hotel ahead of

time they go out of their way to make your trip easier. We did not have

to wait in line to board the plane, they had my walker waiting for me

as we got off the plane, wheelchairs are available & they have someone

waiting with one if you ask ahead. Are you traveling there alone ? I

do not think this dr would mind taping your examination so your hubby

can hear it, it is some serious stuff. When is your appointment for ?

I hope everyone is doing ok.

Diane B

December 9, 2004

Hi Diane,

My appt. is January 25. Even though it's scary, I hope that Dr.

Boachie can give you a surgery date soon,

loriann

P.S. Thanks to you and the others who gave me encouragement and

advice about flying!

> Martha, It was so good to hear about your positive outcome from your

> Revision Surgery. To me it sounds like a MIRACLE, to be standing

> upright & to be abel to walk a mile one month after 2 surgeries is

> beyond my wildest hopes for myself after my Revision Surgery.

> I was amazed that you did not have to go to a Rehab & that you do

not

> have to wear a brace.

> I live in NE PA so I am having Dr Boachie-Adjei do the surgery.

After

> my examination with him & he studied all my films & after a few

weeks I

> recieved his report & I also need 2 operations, a few days to a wk

apart

> according to how I do.

> He is going to do Osteotomies through the bk for the Fl Bk & then

> through the front for a curve from T5 to L1 & a collapse of L2 onto

L3 &

> L3 onto L4.

> I had an Ant/Post Fusion in 85 with bone grafts & Harrington Rods &

I

> was fused from L4 to my Sacrum. I was in a body cast for 3 mts &

this

> was for spondylolisthesis, unstable spine with one vertabrae over

the

> other.

> Was the surgery very painful, were you given adequate medication,

I am

> so full of questions mainly because I have been through so many

> operations.

> I am really afraid to have this surgery, but when you cannot walk

more

> than a few feet without wishing you had a Little Rascal & have tears

> rolling down your cheeks & feel like a jerk as people see you

crying you

> know you must have it done. I do have a Rolling & that does

help

> alot and it even has a seat but if I am alone I have alot of trouble

> getting it in & out of the car.

> Thank you for your post because it REALLY gave me a lift & took

some of

> my fear away.

> Lorriann the best of luck on your trip to see Dr La Garrone, I

hope you

> have a safe trip & come bk with really good news. I found when we

went

> to see Dr Crandall in AZ that if you tell the airlines & hotel

ahead of

> time they go out of their way to make your trip easier. We did not

have

> to wait in line to board the plane, they had my walker waiting for

me

> as we got off the plane, wheelchairs are available & they have

someone

> waiting with one if you ask ahead. Are you traveling there

alone ? I

> do not think this dr would mind taping your examination so your

hubby

> can hear it, it is some serious stuff. When is your appointment

for ?

> I hope everyone is doing ok.

> Diane B

December 9, 2004

Hi Lori:

I forgot to answer your questions about flying vs. driving from St. Louis

to Chicago and now back for a 2 mo. follow-up in January. After I stayed a week

in the hotel connected to the hospital the week after discharge, a friend drove

me home to Chicago in her van. I sat in the front passenger side and reclined

quite a ways back with a pillow underneath and behind me. I took an oxycontin

as well as a Darvocet, then realized after not too long that I needed a small

dose of valium too, to really relax my muscles! Dr. Bridwell asked that I get

out of the car every 45 minutes to stretch, so we did that too. We went halfway

to Bloomington and felt that it was best to stay overnight in a hotel, then do

the remaining 2 and 1/2 hrs. home the next day. That was a good decision for

me, as I felt refreshed in the a.m. and ready to do the rest. I took the same

medication in the morning and the ride went very smoothly.

Now, I no longer take the oxycontin at 4 wks. post-op and haven't needed

any valium since the drive home. I take just the Darvocet as needed. For my 2

month follow-up on Jan. 7, my husband & I will fly, since the time in the air is

only 45 minutes. I probably could have done that on the way home from St.

Louis, but I felt that I had more control over when I stopped and got up, if we

were driving. So, that's it!

I think of you and hope that you are " on your way " to better days with your

appt. set up with Dr. LaGrone. I just can't tell you how wonderful it is to

have the revision behind me, and I know you'lll ffeel that way someday too!

Take good care, Martha

loriann262000 <lcmelko@...> wrote:

Hi Diane,

My appt. is January 25. Even though it's scary, I hope that Dr.

Boachie can give you a surgery date soon,

loriann

P.S. Thanks to you and the others who gave me encouragement and

advice about flying!

> Martha, It was so good to hear about your positive outcome from your

> Revision Surgery. To me it sounds like a MIRACLE, to be standing

> upright & to be abel to walk a mile one month after 2 surgeries is

> beyond my wildest hopes for myself after my Revision Surgery.

> I was amazed that you did not have to go to a Rehab & that you do

not

> have to wear a brace.

> I live in NE PA so I am having Dr Boachie-Adjei do the surgery.

After

> my examination with him & he studied all my films & after a few

weeks I

> recieved his report & I also need 2 operations, a few days to a wk

apart

> according to how I do.

> He is going to do Osteotomies through the bk for the Fl Bk & then

> through the front for a curve from T5 to L1 & a collapse of L2 onto

L3 &

> L3 onto L4.

> I had an Ant/Post Fusion in 85 with bone grafts & Harrington Rods &

I

> was fused from L4 to my Sacrum. I was in a body cast for 3 mts &

this

> was for spondylolisthesis, unstable spine with one vertabrae over

the

> other.

> Was the surgery very painful, were you given adequate medication,

I am

> so full of questions mainly because I have been through so many

> operations.

> I am really afraid to have this surgery, but when you cannot walk

more

> than a few feet without wishing you had a Little Rascal & have tears

> rolling down your cheeks & feel like a jerk as people see you

crying you

> know you must have it done. I do have a Rolling & that does

help

> alot and it even has a seat but if I am alone I have alot of trouble

> getting it in & out of the car.

> Thank you for your post because it REALLY gave me a lift & took

some of

> my fear away.

> Lorriann the best of luck on your trip to see Dr La Garrone, I

hope you

> have a safe trip & come bk with really good news. I found when we

went

> to see Dr Crandall in AZ that if you tell the airlines & hotel

ahead of

> time they go out of their way to make your trip easier. We did not

have

> to wait in line to board the plane, they had my walker waiting for

me

> as we got off the plane, wheelchairs are available & they have

someone

> waiting with one if you ask ahead. Are you traveling there

alone ? I

> do not think this dr would mind taping your examination so your

hubby

> can hear it, it is some serious stuff. When is your appointment

for ?

> I hope everyone is doing ok.

> Diane B

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

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

advertised products.

December 9, 2004

Hi Diane:

Wow, you have been through so very much. You know you will be in good

hands with Dr. Boachie and you will soon be on the " other side " too, walking and

recuperating.

I am so glad to have the walking goals and be able to measure some

progress in that way. I love not having a brace and feeling such wonderful

posture.

You can do it!!! The support from this group is wonderful and makes it all

so much easier when you know that others truly " get it " when you explain your

history and journey!

Sincerely, Martha

Diane1B@... wrote: