Hi, I’m a 24 year old guy and recentl... - Charcot-Marie-Too...

Charcot-Marie-Tooth UK

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Hi, I’m a 24 year old guy and recently I seem to not get good erection while having sex with my girlfriend.How can I fix this embarrassment?

10 Replies

I have no injuries in my pelvic part.

10 Replies
John1945 profile image
John1945

Hello to markalman619.....

Are you SURE that you are on the correct website ???

I have never heard of Cmt, affecting blood circulation or, vascular blood flow matters ???

Charcot Marie Tooth (Cmt) disease, is an inherited neurological disease usually passed from a parent to their offspring(s): In the UK approximately 23,000 sufferers are registered:

I have suffered from it, all of my 69 years of life !!!

The main feature of this disease is that the wax like substance known as MYELIN which wraps around your Motor (command) nerves, and also your SENSORY (feelings/touch) nerves is defective, and leaks: Therefore the speed of both of these information signalling nerves, going to and from the brain is greatly reduced:

Over a very long period of time, your MUSCLES will start to ATROPHIES (waste-away) due to nerve damage, and them not receiving a full strength electrical stimulating signal from the brain to the receiving muscle(s): It usually starts to display its range of symptoms in the 'teenage-years':

This defect within your nerves, in turn then cause's Cmt sufferers to have a lack of balance, and associated walking difficulties, as well bone disorders (high-arches etc) due to weak muscles, also severe mobilily difficulties:

Unfortunately, at present their is NO cure for Cmt, as it is also classed a 'progressively worsening' neurological disease: POSITIVE MANAGEMENT must be accepted, and applied, as every sufferer's symptoms, and mobility outcomes, are different:

I can assure you that Cmt had no ill effects in me fathering two children, who most unfortunately also have Cmt, and my two teenage grandsons aged 17 and 14, both have walking problems, due to high arches causing them to walk on their 'tip-toes' and outer sides of both feet :

John (Glasgow)

PhilC profile image
PhilC in reply to John1945

CMT can cause erectile dysfunction but I have never heard of it effecting someone so young and would suggest it may be due to factors unrelated to CMT. I think you best bet is to see your GP in the first instance and take if from there.

CMTUnitedKindom profile image
CMTUnitedKindomPartner in reply to PhilC

No it can't! I checked with Professor Mary Reilly and she tells me that it doesn't affect this.

CMTUnitedKindom profile image
CMTUnitedKindomPartner

This is not down to CMT. Another person asked me this question and not knowing th answer, I asked Professor Mary Reilly, who is the UKs leading specialist on CMT, based at the Centre for Neuromuscular Disease in London, and she told me that it doesn't cause erectile problems.

Go back to your GP and take it from there.

Karen

PhilC profile image
PhilC in reply to CMTUnitedKindom

Well I'm sorry to say Prof Reilly is wrong, if you refer to the links below you will see CMT is implicated in erectile dysfunction. In my own case, I have CMT1a, my father, uncle and myself experienced ED in our late 50's, testosterone levels, circulation / heart function etc were all checked and found to be normal. Use of Viagra / Cialis has minimal effect.

If Prof Reilly would like a test case I'm more than happy to visit her at the National Neurological Hospital, in fact it would be nice to get some support from the NHS !

ncbi.nlm.nih.gov/pubmed/803...

hopkinsmedicine.org/neurolo...

lindacrabtree.com/cmt/sex/s...

Barry52 profile image
Barry52 in reply to PhilC

Well If the Myelin gets and is damaged then surely the signals for any muscle group or external organ does not receive the correct signals then surely this is possible.It is silly to state no, people with MS suffer with this issue so why not cmt........

John1945 profile image
John1945 in reply to Barry52

Hello to Barry52.....

You are perfectly correct in stating that if the defective MYELIN sheathing/insulation which wraps around your peripheral nerves (long nerves) is defective, and leaks, then the signals being being sent out "to & from " your brain will be slower, and much more weaker, at the receiving muscles: Therfore, over a long period without full electrical signal stimulation, your muscles will waste away:

However, any erectile dysfuction is not a problem with muscles, it's not your muscles that support an erection, it is a vascular problem, with your lack of BLOOD not, your muscles, that support an erection : Cyclic guanosine monophosphate (cGMP). This chemical causes the arteries in the penis to widen (dilate): This then allows extra blood to flood into the penis: The rapid inflow of blood causes the penis to swell into an erection: The swollen inner part of the penis also presses on the veins nearer to the skin surface of the penis: These veins normally drain the penis of blood: So, the flow of blood out of the penis is also restricted, which enhances the erection: Sorry ! you cannot blame Cmt for E.D. problems:

However, I firmly believe that Cmt has an effect on every muscle in your body:

Interestingly, I was having some problems with my breathing, so my most supportive G.P. told me that my diaphram is actually a "sheet-muscle", and he arranged for me to see a respiritory consultant: Surprise! surpise! NHS this Senior Respiritory, Consultant, as is usual had NEVER in his medical career seen a case of Cmt: However, he then arranged for me to have a U.R. ultasound scan of my diaphram, which thankfully showed that it was functioning normally :

Good luck .....

John ..... (Glasgow)

CMTUnitedKindom profile image
CMTUnitedKindomPartner in reply to PhilC

If you actually read those closely, they are saying it "could be more likely" in people with CMT, but not that it actually is. And we're talking of a sample (in the NCBI/Linda Crabtree article) of a sample of 7 men. Seven men out of how many with CMT? AND the paper is dated 1994 - understanding of CMT has come on in leaps and bounds in the intervening 20 years.

As the leading expert in CMT in the UK, if Mary says something isn't related, I believe her! But why not try to get a referral to see her to double check? You'll need to see your GP for the referral, but it could be a very interesting, and potentially useful visit. I believe her waiting time is pretty horrendous, but believe me, it's worth it.

Alternatively, you could attend our Annual Conference in April - she'll be there, doing a Q&A session and no doubt would be interested to talk to you. If you're a member of CMT United Kingdom, the booking forms and details will be posted out to you in the early part of February. It's on 5th April at the Hilton Hotel in Swindon.

Karen

PhilC profile image
PhilC

I don't wish to appear argumentative on the matter but I only quoted a small percentage of the research papers I have read which have concluded that CMT is implicated in ED. It is true to say that the percentage of males effected is relativly small as far as is known.

As one of the most common inherited neurological conditions it is quite amazing how few Doctors / Consultants etc within the NHS know anything about the condition.

Certainly with Primary Care the majority of G.P's are apathetic towards the condition, I have had to battle for years to get any supportive treatment and although I have children the G.P's made no effort to ascertain if any were effected, it was only after one of my sons developed scoliosis did they take any interest.

So I would think the chances of my G.P referring me to Prof Reilly are on a par with winning the Lottery !

Barry52 profile image
Barry52

I have found the knowledge of uk Neuro's is quite poor compared to that of the USA,I was involved in a bad compression injury uk Neuro stated it would make no difference but yet I contacted 2 USA neuro -'s who both stated that a person with cmt can have and show increased problems with cmt due to such injuries.

On Sunday I am at the clinical school being examined for a test for dr's,I can guarantee that my condition will baffle half of them