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Re: Digest Number 363

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Hi all

Gretchen I am like you seem to trip much less than I use to....I wonder

why that is? Could be I watch my feet more?LOL!! Does anyone think

easy spirit shoes are worth trying as walking shoes? I would like to

hear about them before I go and purchase tham because they are kind of

expensive here. Thanks

Cathy

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Hi all

This is Patsy here,

In reply to s asking if anyone else has had spinal problems. I'm 60

now, but when I was 9, I woke up one Sun. morning & was is so much pain.

At that time we had an outhouse for a toilet, remember that was 51 yrs

ago. Anyway I could not walk to it, because oof the pain. I remember it

all like it was yesterday!! The Drs. took lots of x-rays, but didn't

know what it was, told my parents I had had polio, but my folks said no.

Finally, they called in a Dr. Crossland & he said it was Lumbar

Scoliosis. I was in hospital for 17 days w/ weights on my legs, because

one leg was shorter than the other. After that I wore a cast for 6 or 8

wks, from under arms to my hips. I came out straight, but now I think my

spine is not straight, but maybe curved again, but MD I see now says

no, but he never conducts any tests, just observes himself. I have

breathing problems too. This MD says I have Fibromyalga & Osteoarthis,

but ignores the fact that I have CMT. He didn't diagnose it so he

doesn't acknowledge it. Drs. are very vain!! My bro, Jim, 70 had a

larnjectomy last Aug., because of breathing & weak voice. They said it

was a tumor wrapped around the larnx, but I suspect it was from CMT.

Drs. don't know everthing, even from tests taken. The testing is not

always accurate. I told his 3 kids, all older adult kids, to get a 2nd

oppinion, making the Dr. he had very angry at me. They told him they

wanted a 2nd. oppinion, but all he did was to send tem to his cohort in

IL. I told the first Dr. about CMT, because I had just read in CMT

International that therecan be voice problems w/ CMT. But this Dr.

ignored me. I think they wanted to use my bro. as a guinnea pig, as both

Drs. teach about larngectomies at Loyola Hosp. in IL. Sorry this is so

long & drawn out. Thanx for listening!

Patsy

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Hi, Patsy. You are right about " Doctor Vanity. " I would add arrogance

and extreme egotism, or inflated ego to the list. Now, having said

that, I would add that there are some wonderfully sensitive,

compassionate docs out there. It just takes a while to find them.

Glad to know there's someone else out there in my age range - I'm 61 -

CMT II and osteoarthritis in knees are main problems.

I'm glad that many younger folks at least have a diagnosis and have

research results, etc. because nobody knew when I was a kid why I

fell all the time. They just said I was clumsy! Well, I was (am) but

there's a reason and it's not because I'm inferior somehow.

When I was in college I was supposed to be a piano major. I had

teacher after teacher berate me severely for not practicing hard

enough, etc, etc, all to no avail, because my fingers could never

support all the technical stuff. I grieved that issue greatly after I

found out about the CMT. Thought a lot about all the wasted time....

But grateful now that I can still play the piano - I just play

different things now and enjoy it immensely!

Carolyn

> Hi all

> This is Patsy here,

> In reply to s asking if anyone else has had spinal problems.

I'm 60

> now, but when I was 9, I woke up one Sun. morning & was is so much

pain.

> At that time we had an outhouse for a toilet, remember that was 51

yrs

> ago. Anyway I could not walk to it, because oof the pain. I

remember it

> all like it was yesterday!! The Drs. took lots of x-rays, but didn't

> know what it was, told my parents I had had polio, but my folks

said no.

> Finally, they called in a Dr. Crossland & he said it was Lumbar

> Scoliosis. I was in hospital for 17 days w/ weights on my legs,

because

> one leg was shorter than the other. After that I wore a cast for 6

or 8

> wks, from under arms to my hips. I came out straight, but now I

think my

> spine is not straight, but maybe curved again, but MD I see now

says

> no, but he never conducts any tests, just observes himself. I have

> breathing problems too. This MD says I have Fibromyalga &

Osteoarthis,

> but ignores the fact that I have CMT. He didn't diagnose it so he

> doesn't acknowledge it. Drs. are very vain!! My bro, Jim, 70 had a

> larnjectomy last Aug., because of breathing & weak voice. They said

it

> was a tumor wrapped around the larnx, but I suspect it was from CMT.

> Drs. don't know everthing, even from tests taken. The testing is not

> always accurate. I told his 3 kids, all older adult kids, to get a

2nd

> oppinion, making the Dr. he had very angry at me. They told him they

> wanted a 2nd. oppinion, but all he did was to send tem to his

cohort in

> IL. I told the first Dr. about CMT, because I had just read in CMT

> International that therecan be voice problems w/ CMT. But this Dr.

> ignored me. I think they wanted to use my bro. as a guinnea pig, as

both

> Drs. teach about larngectomies at Loyola Hosp. in IL. Sorry this is

so

> long & drawn out. Thanx for listening!

> Patsy

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What part of Montana are you in We have a son in Billings & one in Missoula

we just got back from there... ;) ;) ;)

cmontana@... wrote:

> Hi, Patsy. You are right about " Doctor Vanity. " I would add arrogance

> and extreme egotism, or inflated ego to the list. Now, having said

> that, I would add that there are some wonderfully sensitive,

> compassionate docs out there. It just takes a while to find them.

>

> Glad to know there's someone else out there in my age range - I'm 61 -

> CMT II and osteoarthritis in knees are main problems.

>

> I'm glad that many younger folks at least have a diagnosis and have

> research results, etc. because nobody knew when I was a kid why I

> fell all the time. They just said I was clumsy! Well, I was (am) but

> there's a reason and it's not because I'm inferior somehow.

>

> When I was in college I was supposed to be a piano major. I had

> teacher after teacher berate me severely for not practicing hard

> enough, etc, etc, all to no avail, because my fingers could never

> support all the technical stuff. I grieved that issue greatly after I

> found out about the CMT. Thought a lot about all the wasted time....

> But grateful now that I can still play the piano - I just play

> different things now and enjoy it immensely!

>

> Carolyn

>

>

> > Hi all

> > This is Patsy here,

> > In reply to s asking if anyone else has had spinal problems.

> I'm 60

> > now, but when I was 9, I woke up one Sun. morning & was is so much

> pain.

> > At that time we had an outhouse for a toilet, remember that was 51

> yrs

> > ago. Anyway I could not walk to it, because oof the pain. I

> remember it

> > all like it was yesterday!! The Drs. took lots of x-rays, but didn't

> > know what it was, told my parents I had had polio, but my folks

> said no.

> > Finally, they called in a Dr. Crossland & he said it was Lumbar

> > Scoliosis. I was in hospital for 17 days w/ weights on my legs,

> because

> > one leg was shorter than the other. After that I wore a cast for 6

> or 8

> > wks, from under arms to my hips. I came out straight, but now I

> think my

> > spine is not straight, but maybe curved again, but MD I see now

> says

> > no, but he never conducts any tests, just observes himself. I have

> > breathing problems too. This MD says I have Fibromyalga &

> Osteoarthis,

> > but ignores the fact that I have CMT. He didn't diagnose it so he

> > doesn't acknowledge it. Drs. are very vain!! My bro, Jim, 70 had a

> > larnjectomy last Aug., because of breathing & weak voice. They said

> it

> > was a tumor wrapped around the larnx, but I suspect it was from CMT.

> > Drs. don't know everthing, even from tests taken. The testing is not

> > always accurate. I told his 3 kids, all older adult kids, to get a

> 2nd

> > oppinion, making the Dr. he had very angry at me. They told him they

> > wanted a 2nd. oppinion, but all he did was to send tem to his

> cohort in

> > IL. I told the first Dr. about CMT, because I had just read in CMT

> > International that therecan be voice problems w/ CMT. But this Dr.

> > ignored me. I think they wanted to use my bro. as a guinnea pig, as

> both

> > Drs. teach about larngectomies at Loyola Hosp. in IL. Sorry this is

> so

> > long & drawn out. Thanx for listening!

> > Patsy

>

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

> Experience MSN...

> Get 1 FREE* month of unlimited Internet access!

> http://click.egroups.com/1/6323/13/_/616793/_/963932767/

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

>

>

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Guest guest

What part of Montana are you in We have a son in Billings & one in Missoula

we just got back from there... ;) ;) ;)

cmontana@... wrote:

> Hi, Patsy. You are right about " Doctor Vanity. " I would add arrogance

> and extreme egotism, or inflated ego to the list. Now, having said

> that, I would add that there are some wonderfully sensitive,

> compassionate docs out there. It just takes a while to find them.

>

> Glad to know there's someone else out there in my age range - I'm 61 -

> CMT II and osteoarthritis in knees are main problems.

>

> I'm glad that many younger folks at least have a diagnosis and have

> research results, etc. because nobody knew when I was a kid why I

> fell all the time. They just said I was clumsy! Well, I was (am) but

> there's a reason and it's not because I'm inferior somehow.

>

> When I was in college I was supposed to be a piano major. I had

> teacher after teacher berate me severely for not practicing hard

> enough, etc, etc, all to no avail, because my fingers could never

> support all the technical stuff. I grieved that issue greatly after I

> found out about the CMT. Thought a lot about all the wasted time....

> But grateful now that I can still play the piano - I just play

> different things now and enjoy it immensely!

>

> Carolyn

>

>

> > Hi all

> > This is Patsy here,

> > In reply to s asking if anyone else has had spinal problems.

> I'm 60

> > now, but when I was 9, I woke up one Sun. morning & was is so much

> pain.

> > At that time we had an outhouse for a toilet, remember that was 51

> yrs

> > ago. Anyway I could not walk to it, because oof the pain. I

> remember it

> > all like it was yesterday!! The Drs. took lots of x-rays, but didn't

> > know what it was, told my parents I had had polio, but my folks

> said no.

> > Finally, they called in a Dr. Crossland & he said it was Lumbar

> > Scoliosis. I was in hospital for 17 days w/ weights on my legs,

> because

> > one leg was shorter than the other. After that I wore a cast for 6

> or 8

> > wks, from under arms to my hips. I came out straight, but now I

> think my

> > spine is not straight, but maybe curved again, but MD I see now

> says

> > no, but he never conducts any tests, just observes himself. I have

> > breathing problems too. This MD says I have Fibromyalga &

> Osteoarthis,

> > but ignores the fact that I have CMT. He didn't diagnose it so he

> > doesn't acknowledge it. Drs. are very vain!! My bro, Jim, 70 had a

> > larnjectomy last Aug., because of breathing & weak voice. They said

> it

> > was a tumor wrapped around the larnx, but I suspect it was from CMT.

> > Drs. don't know everthing, even from tests taken. The testing is not

> > always accurate. I told his 3 kids, all older adult kids, to get a

> 2nd

> > oppinion, making the Dr. he had very angry at me. They told him they

> > wanted a 2nd. oppinion, but all he did was to send tem to his

> cohort in

> > IL. I told the first Dr. about CMT, because I had just read in CMT

> > International that therecan be voice problems w/ CMT. But this Dr.

> > ignored me. I think they wanted to use my bro. as a guinnea pig, as

> both

> > Drs. teach about larngectomies at Loyola Hosp. in IL. Sorry this is

> so

> > long & drawn out. Thanx for listening!

> > Patsy

>

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

> Experience MSN...

> Get 1 FREE* month of unlimited Internet access!

> http://click.egroups.com/1/6323/13/_/616793/_/963932767/

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

>

>

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Guest guest

What part of Montana are you in We have a son in Billings & one in Missoula

we just got back from there... ;) ;) ;)

cmontana@... wrote:

> Hi, Patsy. You are right about " Doctor Vanity. " I would add arrogance

> and extreme egotism, or inflated ego to the list. Now, having said

> that, I would add that there are some wonderfully sensitive,

> compassionate docs out there. It just takes a while to find them.

>

> Glad to know there's someone else out there in my age range - I'm 61 -

> CMT II and osteoarthritis in knees are main problems.

>

> I'm glad that many younger folks at least have a diagnosis and have

> research results, etc. because nobody knew when I was a kid why I

> fell all the time. They just said I was clumsy! Well, I was (am) but

> there's a reason and it's not because I'm inferior somehow.

>

> When I was in college I was supposed to be a piano major. I had

> teacher after teacher berate me severely for not practicing hard

> enough, etc, etc, all to no avail, because my fingers could never

> support all the technical stuff. I grieved that issue greatly after I

> found out about the CMT. Thought a lot about all the wasted time....

> But grateful now that I can still play the piano - I just play

> different things now and enjoy it immensely!

>

> Carolyn

>

>

> > Hi all

> > This is Patsy here,

> > In reply to s asking if anyone else has had spinal problems.

> I'm 60

> > now, but when I was 9, I woke up one Sun. morning & was is so much

> pain.

> > At that time we had an outhouse for a toilet, remember that was 51

> yrs

> > ago. Anyway I could not walk to it, because oof the pain. I

> remember it

> > all like it was yesterday!! The Drs. took lots of x-rays, but didn't

> > know what it was, told my parents I had had polio, but my folks

> said no.

> > Finally, they called in a Dr. Crossland & he said it was Lumbar

> > Scoliosis. I was in hospital for 17 days w/ weights on my legs,

> because

> > one leg was shorter than the other. After that I wore a cast for 6

> or 8

> > wks, from under arms to my hips. I came out straight, but now I

> think my

> > spine is not straight, but maybe curved again, but MD I see now

> says

> > no, but he never conducts any tests, just observes himself. I have

> > breathing problems too. This MD says I have Fibromyalga &

> Osteoarthis,

> > but ignores the fact that I have CMT. He didn't diagnose it so he

> > doesn't acknowledge it. Drs. are very vain!! My bro, Jim, 70 had a

> > larnjectomy last Aug., because of breathing & weak voice. They said

> it

> > was a tumor wrapped around the larnx, but I suspect it was from CMT.

> > Drs. don't know everthing, even from tests taken. The testing is not

> > always accurate. I told his 3 kids, all older adult kids, to get a

> 2nd

> > oppinion, making the Dr. he had very angry at me. They told him they

> > wanted a 2nd. oppinion, but all he did was to send tem to his

> cohort in

> > IL. I told the first Dr. about CMT, because I had just read in CMT

> > International that therecan be voice problems w/ CMT. But this Dr.

> > ignored me. I think they wanted to use my bro. as a guinnea pig, as

> both

> > Drs. teach about larngectomies at Loyola Hosp. in IL. Sorry this is

> so

> > long & drawn out. Thanx for listening!

> > Patsy

>

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

> Experience MSN...

> Get 1 FREE* month of unlimited Internet access!

> http://click.egroups.com/1/6323/13/_/616793/_/963932767/

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

>

>

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