Introduction / Sexual Performance AND Sensation

[Guest guest]

First, let me introduce myself. My first post, though I have been

reading other's for over a year, was just a few days ago in response

to Murilo's question from Brazil. (I am glad he had the courage to

ask about sexual functioning.)

My name is Mark. I live in PA, am 43, divorced, no children, and

was diagnose with CMT1A in June of 2001. Since my diagnosis, my

father and 2 of my 4 sisters have been diagnosed. My father and 1

sister have been fitted with AFO's. Both sisters and my father have

been grateful for the answer to so many puzzling questions and for

the sense of security the AFO's provide.

As I wrote in my post to Murilo, finding I have CMT has solved many

mysteries for me as well. In addition to high arches, numbness,

unbelievably cold hands and feet all my life, balance problems

(never could skate, ski, etc), hand/arm tremors which developed

about 7 years ago, pain and stiffness in my

extemities/shoulders/neck/head, and fatigue. On top of all this, I

was diagnosed with Narcolepsy 2 months ago. No wonder I've not been

able to get a good night's sleep for years! So, even the

opportunity for deep physical rest which I so desperately need

(having CMT) is thwarted.

I also have always experienced problems sexually. I have usually

not had much difficulty in becoming aroused, but there is a distinct

lack of sensation from my penis. This, of course, leads to

difficulty in achieving orgasm, which then, of course leads to

thoughts of the futility of continuing which then leads to problems

maintaining arousal or becoming aroused in the first place. It is

not a fun place to be, especially when I have the usual desires for

pleasure and physical intimacy as (I think) most people. When I

first asked my neuro-muscular Dr. if this could also be a

manifestation of CMT, he said " Oh yes, absolutely " . When he left

the room after that consultation, I wept. All those years of

feeling insufficient in so many ways culminated in the realization

of what has been actually going on. I tried Viagra. It definitely

helped with maintaining arousal, but did nothing for increasing the

physical sensation. In some ways, that made everything even more

frustrating.

Lest anyone think I have been describing myself in terms of a

walking disaster, let me clearly state that is not how I see

myself. Yes, I have needed to realize what has been going on in my

body for all these years and I educate myself and do what I can to

minimize further damage; BUT, I live a full, active life. In

addition to working full-time, I am continually remodeling my house,

I own and frequently use my own canoe, I am a skilled woodworker, I

do volunteer work with an organization that trains service dogs, I

like to walk, I am a serious amateur photographer, etc.

So, Murilo and Bob, I know your pain. I wish there were something

more to do about it. No one I know has an answer, short of illegal

drugs. Some medical people look at me with doubtful eyes when I

describe what I (don't) feel and give the usual response that 80-90%

of all sexual dysfunction is in the head. Perhaps so, but there are

those of us who ARE in the other 10-20%, aren't there?

Gretchen, thank you for this forum where we all can ask and share

and receive. I do not wish to offend anyone with my discussion

about sexuality. I DO wish to be candid and acknowledge an aspect

of CMT which may be rare, but DOES exist for some of us, and about

which there is precious little information to be had. At the very

least, perhaps I can offer some sense of relief to others, male and

female, who may be tortured by the same swirling mass of confusion,

insecurity, and frustration that I have.

Thank You.

Mark