New member

Report post · February 9, 2000

Welcome - This is Jill.

Congrats on the wedding- you have enough stress with the CMT and rehab plus

a wedding- yikes! Good luck with the wedding plans and the rehab. Unlike

you I do not have flat feet- I have an extrtemely high arch which makes

buying shoes impossible- especially since I have a wide foot as well...

Glad to have you aboard.

Jill

>From: <a-starr@...>

>Reply-onelist

> <onelist>

>Subject: [] New member

>Date: Tue, 08 Feb 2000 16:02:14 -0500

>

>From: <a-starr@...>

>

>Hi everyone. Some of you may know me as Starr from the CMT chatroom and

>more recently, the CMT weight management list too.

>My name is and I am 23. I live in Philadelphia with my fiance

>Alan, whom I will be marrying in just 6 months.

>I was dx'ed with CMT type 2 almost 2 years ago. I am currently on

>disability too from the CMt as my symptoms are severe.

>I just had a triple arthrodeses done to my left ankle back in Oct which

>is basically just an ankle fusion. I was sick and tired of wearing

>braces that never helped me and I certainly didn't want to wear them

>forever. Sooo, surgery was my last option and I am quite happy with the

>choice I made. I am still in physical therapy for my ankle now and that

>has made a world of difference. If I didn't have a wedding coming up so

>soon, I would probably have the surgery done to my right foot as well,

>but for now I am waiting for the right time.

>I think I have alot of the same symptoms that many of you have, but I

>will tell you just a couple anyway.

>Severe chronic pain all mver my body, weakness, loss of feeling,

>numbness, poor balance and proprioception, bunions, claw/hammertoes,

>flat feet, tingling & shocking sensations. You name it, I have probably

>had it!!

>My brother was the first one dx'ed in my family. Then me and most

>recent my mom who found out last March.

>I hope to learn alot from this list and I can't wait to get to know all

>of you.

>Fell free to email me personally as well. I love to hear how other

>people are coping with this disease!!

>

>---------------------------

Report post · May 1, 2000

hi sally,

welcome to the group, my name is kevin, and i have ra for 10

years now and im also on methotrexate,how long have you been on methotrexate,

and how is the celebrex working? my doctor is talking about putting me on

celebrex i am currently on sulindac and im having some stomach problems,

again welcome ,

kevin(kman798@...)

Report post · May 1, 2000

Hi and Sally,

I also am new to the group. My name is Pat and I have RA also. I take

Methotrexate, Plaquinil, vioxx and give myself injections of Enbril twice a

week. I found out last week that I also have severe osteosporosis as well.

I have Cushings Disease and because of the high doses of steroids my body

puts out...has really damaged my bones.

Hope to hear from you.

Pat

----Original Message Follows----

From: kman798@...

Reply-Rheumatoid Arthritisegroups

Rheumatoid Arthritisegroups

Subject: Re: New member

Date: Mon, 1 May 2000 17:18:45 EDT

hi sally,

welcome to the group, my name is kevin, and i have ra for 10

years now and im also on methotrexate,how long have you been on

methotrexate,

and how is the celebrex working? my doctor is talking about putting me on

celebrex i am currently on sulindac and im having some stomach problems,

again welcome ,

kevin(kman798@...)

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Report post · May 2, 2000

Hi --I've been on methotrexate for about 3 years and Celebrex for about

1 year. I've been lucky, not to have had any stomach problems so far. Sally

Report post · May 2, 2000

Hi Pat--I am taking methotrexate and celebrex now. Is the Enbrel helping?

My doctor wants to talk about it this month. I also just found out I have

osteo and started on Fosamax and estrogen. I also have a very rare disease

called nail patella syndrome, of which there is not much known, but it does

affect the bones also. Keep in touch. Sally

Report post · May 2, 2000

hello pat,

welcome to the group, how long have you been on enbrel? and

is it helping? also does anyone in the group have thyroid problems along with

the ra,? i became hypothyroid about the same time i got ra and was wondering

if this has happened to anyone else,

Report post · May 2, 2000

Hi Sally,

Yes the Enbril is helping me tremendously. For the osteo they were going

to put me on fosamax..but I have had so many stomach problems from my

cushings disease etc. that they felt putting me on the nasal spray Miacalcin

for the osteosporosis was better. I hear it is a very good drug and it sure

is easy to use. I haven't had any problems with it so far.

Keep in Touch,

Pat

----Original Message Follows----

From: clubgeth@...

Reply-Rheumatoid Arthritisegroups

Rheumatoid Arthritisegroups

Subject: Re: New member

Date: Tue, 2 May 2000 12:24:36 EDT

Hi Pat--I am taking methotrexate and celebrex now. Is the Enbrel helping?

My doctor wants to talk about it this month. I also just found out I have

osteo and started on Fosamax and estrogen. I also have a very rare disease

called nail patella syndrome, of which there is not much known, but it does

affect the bones also. Keep in touch. Sally

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Report post · May 2, 2000

Hi ,

I have been on Enbril now for about 6 months. When Ihave gone off of it

because it was late getting here I really notice the difference. I have

been doing real well on it. I am thankful for that because the Methotrexate

and Plaquinil and vioxx were not doing anything for me anyway...but in

combinataion with them and the enbril I am doing good again.

Pat

----Original Message Follows----

From: kman798@...

Reply-Rheumatoid Arthritisegroups

Rheumatoid Arthritisegroups

Subject: Re: New member

Date: Tue, 2 May 2000 14:10:22 EDT

hello pat,

welcome to the group, how long have you been on enbrel? and

is it helping? also does anyone in the group have thyroid problems along

with

the ra,? i became hypothyroid about the same time i got ra and was wondering

if this has happened to anyone else,

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Report post · June 19, 2000

Roseanne,

Hi my name is Lin I live in Illinois and I have exactly your symptoms. I have

had RA for 1 year. My rheumatologist says I have RA big time and I am on lots

of drugs. I did find antiinflammatories really contribute to my swelling...I

am taking Vioxx. However, when I stayed off the vioxx I still swelled. My

hands are so swollen they are stiff. Feet too but hands are more noticeable.

I gave up wearing rings. Last week at Wisc dells at a go cart place (I took

my 12 and 13 yr old there for fun) my hands and wrists swelled up so the

wrist band they put on you to show you paid, cut off my circulation after

only one hour wearing it. I find if I take 25 mg of vioxx twice a day instead

of 50mg at one time, the swelling isn't as bad.

Occassionally I get to thinking maybe I have something else because I don't

get the red knuckles either. I also had high RA factor but low sed rate.

Perhaps denial, perhaps hope that I have something else which there is more

cure than just treatment. I have found enbrel works the BEST but I still have

episodes sometimes due to overdoing physical stuff and sometimes for NO

reason. I have found it to be a crappy disease because it is so subtle.

Nobody understands except for a good rheumatologist. Hope we can help each

other. Let me know how your doing. Lin

Report post · June 19, 2000

Hi Lin:

My name is . I am 52 and have had R/A for about 4 years. I have

several other types of Arthritis too plus asthma and a 14 year kidney

transplant. I have been in continuous pain for several years. I recently

found that Flaxseed Oil pills help relieve some of the pain, better than

anything else I have tried. They have them in health food stores for about

$10. For 100 jell caps. They are big but not really hard to swallow.

If you decide to try them let me know if you find it helps. I think it does.

Please email me at Anjillah@....

Sincerely,

Report post · June 19, 2000

Hi --My name is . I am 51 and was also diagnosed 4 yrs ago.

Today I had my first remicade treatment. I've heard a lot of good things

about results with this. I'll keep you posted on how I make out.

Report post · June 20, 2000

Hi :

Nice to hear from you. I hope the medicine helps you.

Keep me posted. Thanks.

email me at: Anjillah@...

Report post · June 22, 2000

Dear in Arizona,

Unbelievable! I too had same story except I have been on Enbrel since

December. It is truly an amazing drug. However, if you stop it the sickness

comes back as if you never took it. Don't go off schedule. I still have

episodes but they are not as bad. I too am active and I hate losing my body

and energy to this disease. Keep in touch since you and I really have

similar experiences. I never thought I would be giving myself injections but

I never thought I would get an illness which took my identity from me. FIGHT

like I am. Lin in Illinois

Report post · June 22, 2000

Hi ,is Pat and I also live in Arizona. I also have RA and am taking

Plaquinil, Vioxx, Methotrexate, Enbril and oxycontin for pain. I didn't know

I had RA at first because I had a tumor in my head and the steroids I was

putting out was masking the symptoms of RA. I also have degenerative joint

disease, osteosporosis and avascular necrosis of the hips...so am in a real

mess here.

I will say though that the Enbril has really been helping me and hope it

continues to do so....seems everything so far has lost its effect after a

few years of being on it...but am hoping it won't happen with this. When

you stop taking the enbril though the pain is immediately back again.

I hope your doing better now on your meds.

Pat

----Original Message Follows----

From: jennyhanlon@...

Reply-Rheumatoid Arthritisegroups

Rheumatoid Arthritisegroups

Subject: New Member

Date: Wed, 21 Jun 2000 18:59:44 -0000

Hey there! My name is and I live in Arizona. I read what

nne had to say, and I know what she is going through. I was

dianosed with RA just about 3 years ago, and it was hell. I was

doing

fine one night and then the following morning I felt like I was hit

by

a bus. After several months flew by, lots of blood work and lots of

drugs not working and lots of pain and depression. Finally I found a

doctor that helped, he worked mircales. I was doing pretty darn good

for a bout 9 months, then WHAM....I hit bottom again...I started a

new

medication ENBREL, which I heard was very good, but I haven't been on

it long enough to feel anything from it. I'm still having a hard

time dealing with this disease, because I'm such an active person,

now

I get so tired from my body fighting itself, all I want to do is

sleep. nne, you hang in there, it will get better, it just takes

time and a lot of patients which I had to learn.

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Report post · July 12, 2000

In a message dated 7/12/00 5:57:19 PM, BBwolf@... writes:

<< what do people with cmt feel ( are we tired sore and ache) is this normal

>>

Hi . Welcome. You'll find that we are a varied lot, with many

differences as well as similarities. Tired, yes, most CMTers are. Sore and

ache, perhaps 50% of us. Some are simply very weak and perhaps numb.

Regarding other disorders, CMTers can have any that other folks have. I've

met, in cyberspace, CMTers who also have Multiple Sclerosis, Parkinson's,

fibromyagia, or some other well-known disorder.

I'm sorry to hear you also have Lupus. Please feel free to tell us more, What

symptoms led you to be diagnosed with CMT? Tripping? Balance problems?

Progressive weakness? Other?? How are your feet? Hands?

Do you have a family history of CMT?

Report post · July 13, 2000

Hi ,

How are you and your child doing now?

Best of luck with your disability application.

I'm in Seattle - retired - Type 2.

Kat

Report post · July 13, 2000

In a message dated 7/13/00 2:43:02 PM Central Daylight Time, ktbugg54@...

writes:

<< THERE FROM MY

AREA?

KATIE >>

Hi :

I'm not from the Nashville area, having grown up in SW Illinois. I am doing a

family search for my genealogy family tree, and wonder if there could be a

family connection. Do you have any McGill people as relatives. My

Green McGill was born in 1834 close to Nashville, TN.

I have had CMT from early childhood 60 yrs. ago, but it was not diagnosed at

that time. Over the years, it has gotten worse, but I was able to continue my

teaching-educational career for 43 yrs, but felt I had to retire in 1992. My

hands are more claw-like and my balance is not great anymore-- thinking about

a wrist walking cane. I'm fortunate not to have pain (other than shoes

rubbing my toenails), nor electrical-type shocks.

Would like to hear from you,

CMTer in TX

Report post · July 13, 2000

In a message dated 7/13/00 2:43:02 PM Central Daylight Time, ktbugg54@...

writes:

<< THERE FROM MY

AREA?

KATIE >>

OOPS , forgot to sign off--

CMTer Bud in TX

Report post · July 13, 2000

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

From: ktbugg54@... <ktbugg54@...>

egroups <egroups>

Date: Thursday, July 13, 2000 2:28 PM

Subject: [] new member

>HI

>MY NAME IS KATIE, I LIVE JUST OUTSIDE KNOXVILLE,TN. I'M 46 YEARS OLD,

Hi, !! See ya made it here! LOL, yes I'm sure you will enjoy this

nice group of people, they are helpful, kind, funny, and between all of us

we have a lot of CMT information! Nice to see you here, ~>Becky M.

Report post · July 14, 2000

GLAD I FOUND OUT ABOUT THIS GROUP. I'M ENJOYING READING WHAT EVERYONE HAS TO

SAY. I'M ALSO EXPERIENCING COLD, BUT ONLY IN MY LEFT LEG. HAVING A LOT OF

TROUBLE WITH MY LEFT LEG, SCIATIC NERVE PAIN AND PAIN IN OUTER THIGH THAT

HURTS WORSE THE MORE I WALK. DOCTORS SAY IT'S ALL BECAUSE OF CMT.

I ALSO TAKE PROPRANOLOL FOR MY TREMORS. IT HELPS A LOT, BUT DOESN'T STOP THEM

COMPLETELY. AS LONG AS IT SLOWS THE TREMORS, I'M SATISFIED.

ANY SUGGESTIONS ON THE LEG PAIN, ANY ONE HAD SIMILAR PAIN?

KATIE

Report post · July 14, 2000

MY CHILD WITH CMT IS DOING FINE. SHE IS 26 YRS. SHE NEVER HAD AS MUCH TROUBLE

GROWING UP AS I DID. NEVER HAD THE SPRAINED ANKLES. ME, THAT'S ANOTHER STORY.

I FELL OFF OF THE SCHOOL BUS SEVERAL TIMES, RIGHT ANKLE SPRAINED SO MANY

TIMES I LOST COUNT. FELL AT SCHOOL, JUST WALKING FROM CLASS TO CLASS. I'VE

HAD TRIPLE ARTHRODESIS ON RIGHT ANKLE IN 94. LAST DECEMBER HAD ANOTHER

SURGERY TO REMOVE CALLOUS AND CORN CAUSED BY TOO MUCH PRESSURE. HANDS HURT A

LOT. JUST PACE MYSELF, AM LEARNING WHEN TO QUIT INSTEAD OF JUST KEEP GOING

LIKE I USED TO DO. ALSO HAVING A LOT OF MUSCLE SPASMS IN UPPER LEGS.

KATIE

Report post · July 14, 2000

I'M NOT FROM THE NASHVILLE AREA, I'M FROM KNOXVILLE AREA. BETWEEN KNOXVILLE

AND THE SMOKY MOUNTAINS. AS FAR AS I KNOW I'M NOT RELATED TO ANY MCGILLS.

NEITHER PARENT, SIBLINGS, AUNTS, UNCLES, OR COUSINS HAVE HIGH ARCHES OR ANY

REASON TO BELIEVE THEY HAVE CMT. I KNOW PEOPLE CAN HAVE IT AND NOT SHOW ANY

SYMPTOMS. BOY, DO I ENVY THEM. I WAS THE YOUNGEST OF 9 CHILDREN, THE ONLY ONE

WITH ANY WEAKNESS OR HIGH ARCHES. I HAVE 2 CHILDREN, THE FIRST HAS CMT

W/TREMORS, JUST LIKE ME. THE YOUNGEST DOES NOT. I WAS ALWAYS WEAK AS A CHILD,

COULDN'T RUN, COULDN'T THROW A BALL. REMEMBER MONKEY BARS AT THE PLAYGROUND?

I WANTED TO WALK THEM SO MUCH, BUT COULDN'T. ARMS JUST WOULDN'T LET ME.

KATIE

Report post · July 14, 2000

Hello the House,

Welcome my friend to the most knowledgeable group you have ever

encountered.

If I may make a suggestion, lower case print is a lot easier to read then

upper case, at least from my prospective.

Again welcome aboard

E

Report post · July 14, 2000

hi.my name is Candi ,i also suffer from cmt.i have alot of pain in my legs.i

take vicodin,doxipin,and

ms contin if the pain is worse.and this summer heat just drains me!!!anyway

im 44 and live in Ohio

have 1son,28 and he also is having syptoms.im also hard of hearing and read

lips.keep your chin up,

well all get thru this together.write soon!!Candi

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

From: <ktbugg54@...>

Sent: Friday, July 14, 2000 9:23 AM

Subject: Re: [] new member

> GLAD I FOUND OUT ABOUT THIS GROUP. I'M ENJOYING READING WHAT EVERYONE HAS

TO

> SAY. I'M ALSO EXPERIENCING COLD, BUT ONLY IN MY LEFT LEG. HAVING A LOT OF

> TROUBLE WITH MY LEFT LEG, SCIATIC NERVE PAIN AND PAIN IN OUTER THIGH THAT

> HURTS WORSE THE MORE I WALK. DOCTORS SAY IT'S ALL BECAUSE OF CMT.

> I ALSO TAKE PROPRANOLOL FOR MY TREMORS. IT HELPS A LOT, BUT DOESN'T STOP

THEM

> COMPLETELY. AS LONG AS IT SLOWS THE TREMORS, I'M SATISFIED.

> ANY SUGGESTIONS ON THE LEG PAIN, ANY ONE HAD SIMILAR PAIN?

> KATIE

>

> ------------------------------------------------------------------------

> To email plain text is conventional, to add graphics is divine.

> We'll show you how at www.supersig.com.

> 1/6811/13/_/616793/_/963581401/

> ------------------------------------------------------------------------

>

Report post · July 14, 2000

OH I BET I CAN BRING BACK MORE MEMORIES IF I TRIED. I ALWAYS MADE A DRAMATIC

ENTRY TO SOME OF MY CLASSES IN HIGH SCHOOL. WE HAD A BUILDING WITH 3 FLOORS.

MOST OF THE TIME I FELL DOWN THE STAIRS.

WHY IS IT EASIER TO READ LOWER CLASS SPELLING, JUST CURIOUS. IT'S EASIER FOR

ME TO DO IT ALL THE SAME SINCE THE FINGERS DON'T WORK WELL. I CAN , OF COURSE

NOT CAPITALIZE ANY WORDS. IF IT HELPS, I DON'T MIND.

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