Re: Sexual Relationships

[Guest guest]

dear paul,

as a woman i have not experienced your problem but i have noticed a decline in

sexual feelings and my partner has mild ed. when i am in pain i do not want sex

and them my partner has his problem. he has tried injections and they work fine,

i am going out on a limb here but i do have my medical marijuana license and

with my doc's permission i use a hit when we want sex and it works wonders. it

helps with pain and upser stomache from certain meds. i am 66 years old and no

pot head. i hope you can try this and that it helps. sex is beautiful and gives

us many healthy benefits.

francine

[Guest guest]

Hi ,

 

CMT can cause sexual dysfunction in some cases.  Here's a statement from

Hopkins neurology department:

 

" Symptoms

The symptoms of inherited neuropathies depend on the type of neuropathy. Most

patients experience very slowly progressive sensory symptoms that start in the

feet and move up. They also have atrophy and weakness in their legs and, later

in life, in their hands. The ankle weakness often leads to ‘foot drop’. Some

patients experience balance problems. Patients, with involvement of the

autonomic system, experience lightheadedness, diarrhea, constipation,

incontinence or sexual dysfunction. "

Here's the link to the page:

http://www.hopkinsmedicine.org/neurology_neurosurgery/conditions_main/charcot_ma\

rie_tooth_disease.html

 

Although CMT is a possible cause, it's a good idea to make sure that there isn't

anything else going on.  I understand heart disease is one of the biggest

culprits, i.e. narrowing of the arteries, high blood pressure, etc..  You

mentioned you're in general good health, so I assume you've already been checked

out, but if not, you may want to ask your doc for heart work-up, i.e. EKG,

stress test, etc., just to rule this out as a possibility.

 

Other things that can have an impact include medications, alcohol, fatigue, and

pain.

 

[Guest guest]

From my study and research of CMT, I have learned that CMT can affect the

pudental nerve in both men and women with CMT. You can search the Net for info

on the pudental nerve. I however, do not have this particular problem.

Gretchen

[Guest guest]

.am 44 and  i do have e. d.But mine is due to my  back, i had back surgery

10 years ago , ever since then i have suffered from e. d.Have you tried calias

or other drugs for e. d.?My back is still a issue , im having back surgery on

this  wed. 8/12/2009. 

From: <englishdoctor2002@...>

Subject: Sexual Relationships

Date: Thursday, August 6, 2009, 1:23 PM

 

I hope no one in the group finds this matter offensive but I get zero help from

my doctor or local health service regarding my CMT.

I seek advice from fellow sufferers who may have some experience on the matter.

I am a 58 year old male, average weight & height in general good health.

I was accidently diagnosed with Familia Muscular Atrophy (Now called CMT 1)when

I was in my early 20's. My only symptoms prior to formal diagnosis was poor

balance, high instep,week grip.

Now that I am in my late 50's problems with muscle weakness, inability to do up

buttons etc, pronounced gait are m,ore obvious and frustrating but largely

ignored by me!

The one problem I do have which concerns me is impotence / erectile dysfunction.

I have had all the normal test for testerone deficiency etc all normal.

I have noticed that I do not appear to respond to normal stimulation of the

genital area.

I am convinced it is related to my CMT but my physician says CMT only effects

hands & feet & spine.

Has anyone else in the group encountered similar problems?

Did you develope a coping strategy?

Did anything help?

I would appreciate advice from anyone with direct experience of living with CMT.

[Guest guest]

,

 

Here is another link for you.  This is a statement by Dr. Bird, who has

studied CMT extensively:

 

http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene & part=cmt1

 

Other findings in individuals with CMT1. A few men with CMT1 have reported

impotence [bird et al 1994].

 

[Guest guest]

Dear Fiona,

 

Thank you for your email.  Certainly in the S.E of the UK support from the G.P

and PCT is virtually non existant. I did managed to get some orthotic shoe

liners off the NHS but to be honest they were useless and I ended up going

private.

 

I try to ignore the CMT as much as possible but there are certain problems you

need advice on !!

 

[Guest guest]

Hello

 

My apologies if my post sounded as if I was suggesting you ignore your CMT (I'm

not great at posting messages) I was really trying to say that (in my

experience) CMT might be the cause of whatever (for instance arthritis in my

knee) but its not the neurologist that can take things further its another

department (the physio therapy dept in my example)

 

But if the GP doesn't know much about CMT he mightn't think to offer you PT or

just to get you out of his waiting room, will refer you right back to neurology

so you've got a long wait to be referred onwards.  I don't disagree that your

neurologist might have a good idea where you can go but in another instance of

mine (Imy mobility when pre menstral is practically zero) I was faced with the

" rabbit in the headlights " expression and a wasted afternoon. My own suggestion

that a gynaecologist might be a good idea was seized like a lifebelt.

 

So, I hope you've found some anectotal advice to help point you in a direction

that might circumvent a sit in an outpatients dept!

 

Regards

 

Fiona