Re: Impotence associated with the Charcot-Marie-Tooth syndrome.

[Guest guest]

Hey Becky

You sure the men in the group want to hear this?

[Guest guest]

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

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

egroups <egroups>

Date: Wednesday, January 24, 2001 5:29 AM

Subject: Re: [] Impotence associated with the Charcot-Marie-Tooth

syndrome.

>Hey Becky

>You sure the men in the group want to hear this?

>

>>>>, maybe not, LOL, but they need to be informed, ~>Becky M.

[Guest guest]

In a message dated 1/24/2001 2:44:39 AM Pacific Standard Time,

rmax@... writes:

<< There was some benefit from papaverine injection therapy or penile

implants. The association of impotence with CMT is likely to be more common

than previously recognized. >>

What no Viagra?

[Guest guest]

In a message dated 1/24/2001 4:56:48 AM Pacific Standard Time, lls@...

writes:

<< I have only a slight decrease in my upper

legs and perineal area.

Lamar that is good news. We should also add that lots of people can't hum

get it up or get it going. Not just CMT people. Its very common from what I

hear.

[Guest guest]

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

From: Maxwell

Sent: Wednesday, January 24, 2001 05:19 AM

Subject: [] Impotence associated with the Charcot-Marie-Tooth

syndrome.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_ui

ds=8033941 & dopt=Abstract

Eur Neurol 1994;34(3):155-7 Related Articles, Books, LinkOut

Impotence associated with the Charcot-Marie-Tooth syndrome.

Bird TD, Lipe HP, Crabtree LD

Department of Medicine (Neurology and Medical Genetics), University of

Washington, Seattle.

We report 7 men (ages 45-61 years) with impotence associated with the

Charcot-Marie-Tooth syndrome (CMT). The range of onset of erectile

dysfunction varied from 38 to 55 years of age. One patient had classic CMT

1A with autosomal dominant inheritance, slow motor nerve conduction

velocities and the 17p DNA duplication. One had probable type-II hereditary

motor and sensory neuropathy. None of the patients had diabetes. There was

some benefit from papaverine injection therapy or penile implants. The

association of impotence with CMT is likely to be more common than

previously recognized.

PMID: 8033941, UI: 94307312

[Guest guest]

Lamar here,

Though it has been mentioned before, many new ones are on the list. CMTI

has a good publication on the sexual aspects of CMT. According to it, in

addition to male impotency, some of both sexes have shown a decrease in

genital sensations which sometimes prevents orgasms. Like everything else

concerning CMT, this seems to be highly individual. While I have almost no

surface feeling from knees down, I have only a slight decrease in my upper

legs and perineal area.

[Guest guest]

In a message dated 1/24/01 6:47:09 AM Eastern Standard Time, rmax@...

writes:

<< Hey Becky

>You sure the men in the group want to hear this?

>

>>>>, maybe not, LOL, but they need to be informed, ~>Becky M.

>>

Hey , we can handle it, We have viagra now you know. Yo Ho.

E

[Guest guest]

In a message dated 1/24/2001 4:48:15 PM Eastern Standard Time,

jege6666@... writes:

<< Hey , we can handle it, We have viagra now you know. Yo Ho.

E >>

Go for it E>>>>>>>

[Guest guest]

When reading some of the prior postings about the ages of Parents I

don't think there is to much impotence in CMT according to the ages

looked at in 7 CMTers...Smoking, riding bikes,high blood pressure,

anxiety, stress and lots of things cause impotence, even ugly girls

and men...I wonder if the 7 studied had any other factors other than

CMT..

[Guest guest]

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

From: samjohn33@... <samjohn33@...>

egroups <egroups>

Date: Wednesday, January 24, 2001 2:01 PM

Subject: [] Re: Impotence associated with the Charcot-Marie-Tooth

syndrome.

>When reading some of the prior postings about the ages of Parents I

>don't think there is to much impotence in CMT according to the ages

>looked at in 7 CMTers...Smoking, riding bikes,high blood pressure,

>anxiety, stress and lots of things cause impotence, even ugly girls

>and men...I wonder if the 7 studied had any other factors other than

>CMT..

>

>>>>>>Maybe they had a unique way of testing this. Maybe they put the men

one by one into a low lit room and showed XXX plusX rated movies? LOL, just

a thought! LOL< p.s. I'm just joking!! ~>Becky M.

[Guest guest]

Hi all,

Dick S. here

I was thinking of asking but kind of afraid to see if there was a response.

Sexual acitvity/ability is a sensitive issue with all men I guess. Enough

said. I do not have an erectile problem but I do have a very marked decrease

in sensation. The decreased sensation will lead to a difficulty in

maintaining an erection throughout the whole time of activity. I have

noticed this only recently(last 12-15 months)

I did ask Doc about this and he said to consult a urologist. My problem is

not erectile dysfunction, but lack of sensation. Since sensation invloves

the peripheral nerves wouldn't 1 + 1 = cmt?

Further discussion would not embarrass me, sharing might enlighten us all.

[Guest guest]

Dick,

Lamar here,

According to what I have read it is very possible to be CMT related. As I

said, CMTI has a leaflet on this. I do notice some slight decrease in

surface feeling but it is only slight. I also have developed a urinary

urgency. When I have to go, I HAVE TO GO. In addition, I am single, and

find that my CMT limits a relationship that would get to the point where

sexual activity was a part of it. So it's really not a big concern to me.

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

From: swolfnc2@...

egroups

Sent: Thursday, January 25, 2001 09:50 AM

Subject: Re: [] Impotence associated with the Charcot-Marie-Tooth

syndrome.

Hi all,

Dick S. here

I was thinking of asking but kind of afraid to see if there was a

response.

Sexual acitvity/ability is a sensitive issue with all men I guess. Enough

said. I do not have an erectile problem but I do have a very marked

decrease

in sensation. The decreased sensation will lead to a difficulty in

maintaining an erection throughout the whole time of activity. I have

noticed this only recently(last 12-15 months)

I did ask Doc about this and he said to consult a urologist. My problem

is

not erectile dysfunction, but lack of sensation. Since sensation invloves

the peripheral nerves wouldn't 1 + 1 = cmt?

Further discussion would not embarrass me, sharing might enlighten us all.

[Guest guest]

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

From: Lamar son <lls@...>

<egroups>

Sent: Thursday, January 25, 2001 8:11 AM

Subject: Re: [] Impotence associated with the Charcot-Marie-Tooth

syndrome.

> Dick,

> Lamar here,

> According to what I have read it is very possible to be CMT related. As I

> said, CMTI has a leaflet on this. I do notice some slight decrease in

> surface feeling but it is only slight. I also have developed a urinary

> urgency. When I have to go, I HAVE TO GO. In addition, I am single, and

> find that my CMT limits a relationship that would get to the point where

> sexual activity was a part of it. So it's really not a big concern to

me.

> ----- Original Message -----

> From: swolfnc2@...

> egroups

> Sent: Thursday, January 25, 2001 09:50 AM

> Subject: Re: [] Impotence associated with the Charcot-Marie-Tooth

> syndrome.

>

>

> Hi all,

> Dick S. here

>

> I was thinking of asking but kind of afraid to see if there was a

> response.

> Sexual acitvity/ability is a sensitive issue with all men I guess.

Enough

> said. I do not have an erectile problem but I do have a very marked

> decrease

> in sensation. The decreased sensation will lead to a difficulty in

> maintaining an erection throughout the whole time of activity. I have

> noticed this only recently(last 12-15 months)

>

> I did ask Doc about this and he said to consult a urologist. My problem

> is

> not erectile dysfunction, but lack of sensation. Since sensation

invloves

> the peripheral nerves wouldn't 1 + 1 = cmt?

>

> Further discussion would not embarrass me, sharing might enlighten us

all.

>

>

>

[Guest guest]

Dick wrote:

I did ask Doc about this and he said to consult a urologist. My problem is

not erectile dysfunction, but lack of sensation. Since sensation invloves

the peripheral nerves wouldn't 1 + 1 = cmt?

I agree with that 1+1= cmt - I'm losing sensation all over, someplaces to

the point there isn't any feeling. The impotence is a bit of a problem

caused by lack of feeling however viagra helps in that area.

I was divorce and having problems keeping a relationship going since

eventually it becomes sexual at some point and this presented a problem. At

that time I didn't know anything about cmt and had noticed some loss of

feeling but not enough to click the lightbulb on. I finally saw a

neurologist -(lost major feeling on back of one arm).

Then I found out about neuropathy and CMT. Explained whole lot.

I also count my lucky stars because about this time I meet someone who was

willing to understand the problem and was willing to married me dispite it.

Jim

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[Guest guest]

Hi Group,

Make that number 8 ! When first Dx'd I asked that question of each neuro-doc

and got mixed replies at different times. The " problem " has tracked the

other deteriorations and I am conviced it is coupled to the CMT/HNPP. The

sensation vs. response comments may be academic in terms of the results.

There are other factors to be sure that add into the equation (disease,

stress, substience abuse , etc.) but if the muscles that provide the

blockage of veinous flow in " certain critical areas of the body " are

weakened or don't respond - it ain't going to happen at all or not enough.

We can't blame it all on advancing age anymore folks. - EdM

PS - My E-mail server had a problem after Jan. 23 and I had to take care of

603 E-mails today but still wanted to comment on this one.

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

From: Maxwell <rmax@...>

<egroups>

Date: Wednesday, January 24, 2001 5:21 AM

Subject: [] Impotence associated with the Charcot-Marie-Tooth syndrome.

>

>

>

>http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_u

ids=8033941 & dopt=Abstract

>

>

> Eur Neurol 1994;34(3):155-7 Related Articles, Books, LinkOut

>

>Impotence associated with the Charcot-Marie-Tooth syndrome.

>

>Bird TD, Lipe HP, Crabtree LD

>

>Department of Medicine (Neurology and Medical Genetics), University of

Washington, Seattle.

>

>We report 7