Introducing myself

April 2, 2002

Hi Steve,

Sounds like your on the right track, just be careful

of getting over tired. The combination of painful feet

and long hours of work can be distructive to the

nervous system.

E

--- Original Message ---

From: Steve Sorkin <AgentSteve@...>

Subject: [] Introducing myself

>Dear ,

>

>I am a new group member, although not new to CMT. I

am 35

>and work in Marketing/Business Development for Film

>Distribution. I was diagnosed with CMT when I was

about 12,

>at that time my main problem was tripping/falling

over anything!

>Of course I was worried! After my diagnosis, certain

things were

>suggested: more rest, extra potassium, also extensive

physical

>therapy and when I was about 15 I had some corrective

foot

>surgery. That was then.

>

>I learned early to take care of myself and my needs;

I was lucky

>my parents and neurologist guided me on this. So I

was encouraged

>to try new things and during my teens studied hard,

also played

>the sax and clarinet. I could do some physical

activities,

>mostly non-competitive stuff like riding, swimming,

nature hikes,

>I also surfed for awhile. By that time I had found a

Dr. who

>found a medication that seemed to help with my

balance.

>

>Now that I work 70+ hours a day, I use a sports club

where there

>is a pool and also do some light gym ex. My trainer

knows of my

>CMT (1A) and keeps an eye on me. That corrective foot

surgery

>helped so now I wear Rockports, or Eccos, with

inserts inside

>from my orthotist. My feet really hurt sometimes.

These last 3

>weeks were extremely hectic at work and the only way

I got through it was keep a change of shoes at work,

and also tennis balls under my desk,

>so, when I was there, I rubbed my feet on them

to 'unkink' and

>relax the foot muscles.

>

>I am 35 and not quite where I want to be in terms of

my

>career, but I'll get there! I am single, but I am

thinking of

>proposing to my girlfriend this summer. We have dated

5 years

>and in her words 'it's time'! LOL But truly, she is

wonderful

>and right!

>

>It is nice to find such a well organized and mannered

group and I hope to learn more about CMT through it. I

am already greatly impressed with the 'bookmarks'

section. I heard about this group through my orthotist.

>

>Steve

>

October 31, 2004

Hello everyone!

My name is , I'm an asthmatic of 14 years, steroid dependant for

five years running. I've been disabled (on social security) for the last

three years. I'm a mom of 2 children and I live in Haverhill, MA. (About

an hour north of Boston)

My current daily meds are prednisone, singulair, advair and nexium, and I

also receive 60mg kenelog injections every two weeks. I have some PRN meds

for migraines or a very seldom anxiety attack. As you know, an anxiety

attack can and most likely WILL lead to an asthma attack!

I see a specialist in Boston for my asthma. He's the head of the Center for

Chest Diseases at Brigham & Women's Hospital. I owe him a ton, and we're

both patiently awaiting information to see if my insurance company will

listen to his pleas and let me start Xolair treatments.

I've learned SO MUCH from my doctor about asthma, how to handle and treat my

flare ups, how to see them coming and what my limitations are. I've managed

to cut my yearly hospital stay total from 6-12 down to about 3 or 4. The

last time I was admitted was in July and I was in for just five days this

time. Before that, I was in for a longer stay at the end of

January/beginning of February.

My attacks MAINLY stem from allergies, but I'm prone to exercise and stress

induced attacks as well. I'm hoping that the Xolair will cut down on my

allergy related attacks and therefor make me less prone to the other types.

It seems right now that my lungs are in a constant state of inflammation

making every attack a bad attack.

I do everything I'm supposed to do. By staying in a controlled environment

most of the time because I don't work, it's easier for me to keep track of

my peak flow several times per day and not worry about a supervisor at work

getting angry because I need a neb treatment!

I'm lucky to have a fantastic support system in my family, friends and

doctors (specialists as well as my primary care) and I have a positive

attitude about my day to day life.

I'm looking forward to hearing about the changes Xolair has made for some of

you, and hoping to see many of my questions addressed just by reading the

posts!

Breath easy everyone and have a great rest of the weekend!

Love and Hugs ~

November 8, 2004

Chi,

I can swim having learned when I was a child. But, where I swim, they have a

lot of flotation devices that you can strap around the waist and you cannot

drown. My husband is a non-swimmer but now he will go with me to swim and puts

on the device. They are very light weight and they keep you above water.

VCL

[sorry if you get this message twice. I resend it as I don't see the

mesage after posting.]

Hi VCL and all,

My name is Chi. I am from Bangkok, Thailand. My husband, Ton, has

had primary progressive MS since 2001. We have just got married for 4

months. I do not know neither anyone in Thailand taking LDN nor any Dr.

prescribing LDN. My husband's neurologist told us during the previous

visit that Naltrexone is not a typical drug being used here. I decided to

join the group anyway thinking it would not hurt to learn what others are

coping with it.

I have been reading the responses to this topic and was wondering what

LDN would do for the leg's stiffness that's already there and if it would

help with the bloating in the stomach. I plan to go see my husband's

neurologist myself this wednesday as he asked for not seeing any

doctors for a while. So maybe I can discuss about LDN with her.

I'm surprised to know that VCL, you swim 3-4 times a week. I used to

want my husband to exercise in the water but he had muscle cram and I

was afraid if something happens I couldn't help him. He's having a hard

time with bloating and the burning sensation in the stomach all the time,

which causes back pain & gait walking. I am having a hard time seeing

him not being ready to exercise due to the above and started to worry

about his weight.

His neurologist prescribes Baclofen and Tegretol but he doesn't want to

be on them due to the drowziness side effect and loosing legs' muscle

strength. He chooses to have stiffness rather than not being able to

walk. So he's now not on any drugs beside Lipitor (help reducing

choresteral.)

I hope all of you don't mind me telling my husband's problems and I

would so much appreciate it if any of you have any suggestion. You all

have been very kind to the group member. Thank you very much.

Chi

November 9, 2004

In a message dated 11/8/2004 7:58:03 PM Central Standard Time, lbaden@... writes:

Hi VCL and all,

My name is Chi. I am from Bangkok, Thailand. My husband, Ton, has had

primary progressive MS since 2001. We have just got married for 4 months. I

do not know neither anyone in Thailand taking LDN nor any Dr.

prescribing LDN. My husband's neurologist told us during the previous visit

that Naltrexone is not a typical drug being used here. I decided to join

the group anyway thinking it would not hurt to learn what others are coping

with it.

I have been reading the responses to this topic and was wondering what LDN

would do for the leg's stiffness that's already there and if it would help

with the bloating in the stomach. I plan to go see my husband's neurologist

myself this Wednesday as he asked for not seeing any doctors for a while. So

maybe I can discuss about LDN with her.

I'm surprised to know that VCL, you swim 3-4 times a week. I used to want

my husband to exercise in the water but he had muscle cram and I was afraid

if something happens I couldn't help him. He's having a hard time with

bloating and the burning sensation in the stomach all the time, which causes

back pain & gait walking. I am having a hard time seeing him not being ready

to exercise due to the above and started to worry about his weight.

His neurologist prescribes Baclofen and Tegretol but he doesn't want to be

on them due to the drowsiness side effect and loosing legs' muscle strength.

He chooses to have stiffness rather than not being able to walk. So he's now

not on any drugs beside Lipitor (help reducing

cholesterol.)

I hope all of you don't mind me telling my husband's problems and I would so

much appreciate it if any of you have any suggestion. You all have been very

kind to the group member. Thank you very much.

Chi

Hello Chi,

I am sorry that your husband is having a terrible time. Being the type of MS that he has is really rotten. I feel for him and also for you to watch the one you love getting worse by the day. I feel for the two of you. I wish we all could get rid of the monster with a snap of the fingers but we can't and I am sorry.

Both my neuro and PCP would not write me script so I took into my own hands and ordered it from

MedsMex.com Your Online Source of Quality Discounted Medications. - Revia, 50 m . It took about three weeks to get here and I have been on it now since the 20th of August. I could tell the difference the next day. My bladder and bowels were instantly better. I had more energy and did not lose my balance ever again. I am SPMS and I had a MRI at the end of April and I have three new hugh lesions. One of the brain stem. Now let me tell you I was scared to death. My neuro would not try anything for me. He was just going to let me get worse. Needless to say I am not going to him any longer. If you get the LDN from this site you need to cut the pill in half. (The pill comes in 50 mg.) I take that half and crush it and mix 25 ml of distilled water. You need to get a syringe that has the ml. on it to measure it out right. You need to keep in the fridge after mixing it up. I did not take it one night last week and I felt worse then I have ever felt in my life. It took me about three days to start feeling better. I will never do that again.

May I wish the two of you good luck.

Best wishes,

Love and hugs.

CJ

MS is like a roller coaster-It has its ups and downs.

Welcome Chi,

Stiffness tends to be a problem at first, but I believe many of us have

found that between stretching exercises and allowing some time to pass, the

stiffness seems to lessen until it's gone. Even though your husband is

primary progressive, I would still suggest he give LDN a try. If nothing

else, to stop the progression of MS. Many of us find other benefits, I'm

sure you've picked them up in the posts you've read. He has nothing to

loose and so much to gain.

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

From: Chi [mailto:dymilo@...]

Sent: Monday, November 08, 2004 12:22 PM

low dose naltrexone

Subject: [low dose naltrexone] Introducing myself

[sorry if you get this message twice. I resend it as I don't see the mesage

after posting.]

Hi VCL and all,

My name is Chi. I am from Bangkok, Thailand. My husband, Ton, has had

primary progressive MS since 2001. We have just got married for 4 months. I

do not know neither anyone in Thailand taking LDN nor any Dr.

prescribing LDN. My husband's neurologist told us during the previous visit

that Naltrexone is not a typical drug being used here. I decided to join

the group anyway thinking it would not hurt to learn what others are coping

with it.

I have been reading the responses to this topic and was wondering what LDN

would do for the leg's stiffness that's already there and if it would help

with the bloating in the stomach. I plan to go see my husband's neurologist

myself this wednesday as he asked for not seeing any doctors for a while. So

maybe I can discuss about LDN with her.

I'm surprised to know that VCL, you swim 3-4 times a week. I used to want

my husband to exercise in the water but he had muscle cram and I was afraid

if something happens I couldn't help him. He's having a hard time with

bloating and the burning sensation in the stomach all the time, which causes

back pain & gait walking. I am having a hard time seeing him not being ready

to exercise due to the above and started to worry about his weight.

His neurologist prescribes Baclofen and Tegretol but he doesn't want to be

on them due to the drowziness side effect and loosing legs' muscle strength.

He chooses to have stiffness rather than not being able to walk. So he's now

not on any drugs beside Lipitor (help reducing

choresteral.)

I hope all of you don't mind me telling my husband's problems and I would so

much appreciate it if any of you have any suggestion. You all have been very

kind to the group member. Thank you very much.

Chi

November 9, 2004