Do you experience penile numbness?

[Hip]

Now we have another symptom we can throw under the me/cfs umbrella.

Just because a few ME/CFS patients experience symptom X, you don't just add X to the list of ME/CFS symptoms.

And even if symptom X were the caused by the same virus that triggered your ME/CFS, that still does not imply it is necessarily an ME/CFS symptom.

For example, the virus that appeared to trigger my ME/CFS also caused rapid onset of receding gums (periodontitis) in myself, and in several other people who caught the same virus. But that does not make periodontitis an ME/CFS symptom.

 

[Hip]

A quick Google check reveals that peripheral neuropathy can be caused by herpes simplex virus, Epstein-Barr virus, cytomegalovirus, parvovirus B19, Lyme disease, shingles, hepatitis C, leprosy, diphtheria and HIV. Refs: 1 2

Peripheral neuropathy can also be caused by autoimmune diseases, among other causes. See a list of causes here.

Symptoms of peripheral neuropathy include: numbness, tingling, pricking sensations (paresthesia) and muscle weakness.



For penile neuropathy, the causes include:

Causes of Penile Neuropathy

There are different factors that cause neuropathy in the male sexual organs.

1. Poor blood circulation: The primary cause of the penile neuropathy in males is poor blood circulation that results in loss of oxygen in the nerve fibers.

2. Trauma: Another common cause of neuropathy in the penis is trauma, injury or physical damage to the nerves.

3. Infection and surgery: Infection and injury due to surgery can also cause damage to the penile nerves. Males who develop prostate cancer often have to go through a particular surgery that damages penile nerves.

4. Existing medical condition: Medical conditions such as diabetes, obesity and cardiac problems also affect the peripheral circulation adversely.

5. Penile enlargement techniques: Stretching equipment and jelqing techniques for penis enlargement can cause damages to the penile dorsal nerves. These methods apply pressure to the nerves of sex organs and cause long term damages.

 

[frog_in_the_fog]

I certainly believe most of my symptoms collectively are autoimmune in nature.

 

[Hip]

@lauluce Well done for starting this thread, in any case. Some people might see it as a subject that they are too embarrassed to bring up, so it is good that you opened up this topic for discussion.

In terms of loss of skin sensitivity in general, I noticed that after I caught the virus which later appeared to cause ME/CFS, one of the early symptoms it produced (after a few months, and before my ME/CFS appeared) was a mild loss of sensation and tactile sensitivity in the skin throughout my body (which still remains today, over a decade later).

As well as the mild loss of tactile sensitivity, I also developed chronic pins and needles (paresthesias) that lasted for many years. These are symptoms of peripheral neuropathy.

But I don't have any areas of the body skin where this loss of tactile sensitivity is worse than others; so it is possible that I have some very mild loss of penile tactile sensitivity, but no more than on other parts of the body.

 

[lauluce]

@lauluce Well done for starting this thread, in any case. Some people might see it as a subject that they are too embarrassed to bring up, so it is good that you opened up this topic for discussion.

In terms of loss of skin sensitivity in general, I noticed that after I caught the virus which later appeared to cause ME/CFS, one of the early symptoms it produced (after a few months, and before my ME/CFS appeared) was a mild loss of sensation and tactile sensitivity in the skin throughout my body (which still remains today, over a decade later).

As well as the mild loss of tactile sensitivity, I also developed chronic pins and needles (paresthesias) that lasted for many years. These are symptoms of peripheral neuropathy.

But I don't have any areas of the body skin where this loss of tactile sensitivity is worse than others; so it is possible that I have some very mild loss of penile tactile sensitivity, but no more than on other parts of the body.

very interesting to read, I'm curious about your case. do you know what's the virus that appeared to haver started your ME/CFS? I have paresthesias mostly at my hands and ffet (burning sensation, pins and needles, etc) and loss of sensibility at those same areas but as the topic of this thread suggest, that loss of sensibility is only total at parts o my penis (glans and some areas that should need a graphic to describe, although I can say the problem is completely symmetrical). Also I had for some time a total loss of sensibility between my right toe and the finger next to it, but it improved a little. I might add that paradoxically, in every other part of my body, especially chest and the lowe part of my legs, I got some sort of increased sensitivity to touch that once made uncomfortable to wear full pants, and I waited all year for summer to arrive and be able to use shorts. As many people has pointed in this thread, I've got zero certainty that all this is related to ME, and actually, this body sensory symptoms appeared a year and a half BEFORE fatigue and generalised body pain at muscles and articulations, both of them increasing considerably with physical activity (PEM). The chronology is as follow, to clarify: first year: bodily sensory symptoms, first half of second year, memory impairment, second half of second year, generalised pain and fatigue, worsening with activity. Reading the replies to this thread including yours, I'm beginning to think that at least the first year symptoms could have been the product of smething else than ME, an infection perhaps as in your case, think LYME or herpesvirus for instance, and that ME was a later consequence of the first. What do you think? I'm positive for Herpes simplex virus Type 1 and Type 2, the later with a very high antibody titter, but only Igg and not Igm, and also I should say I had genital herpes. I had mouth and genital herpes lesions appear before having any short of sexual activity, I don't know where I got them from.

 

[Hip]

do you know what's the virus that appeared to haver started your ME/CFS?

It is most likely coxsackievirus B4, by my symptoms and blood tests (performed using the neutralization test, which is the only blood test that, by Dr Chia's research, can reliably detect chronic coxsackievirus B infections).

As many people has pointed in this thread, I've got zero certainty that all this is related to ME, and actually, this body sensory symptoms appeared a year and a half BEFORE fatigue and generalised body pain at muscles and articulations, both of them increasing considerably with physical activity (PEM).

This is similar to me: my mild sensory symptoms and major body-wide paresthesia symptoms occurred after a few months with the virus; but it then took another 2 years before I developed proper ME/CFS (although some mild fatigue symptoms were there even in the early stages of this viral infection).

I was also able to observe the effects of my virus on other people, as many friends and family caught it (my virus produced some characteristic physical symptoms, so it was easy to know who had caught it). Three people had a heart attack on first catching the virus, in one case, followed by chronic viral myocarditis. Coxsackievirus B is a common cause of chronic myocarditis, and is associated with heart attacks.

I'm beginning to think that at least the first year symptoms could have been the product of smething else than ME, an infection perhaps

That sounds quite possible, though your skin numbness and skin sensory symptoms could be due to the same infection that later triggered your ME/CFS.

This is what I believe happened in my case: the suspected coxsackievirus B4 I caught first triggered some peripheral neuropathy in me, and then later triggered ME/CFS. It is not unusual for the same virus to cause more than one disease or condition in the same patient.

I had several different medical conditions triggered by my virus, including: chronic paresthesias, loss of smell, sudden onset periodontitis, strange crêpe paper-like wrinkling of the skin, sudden onset abdominal obesity (central obesity), and sudden onset of neuropsychological symptoms such as anhedonia, and generalized anxiety disorder.

All of these appeared before my ME/CFS took hold. I detail the symptoms of my virus on my website.

 

[JamBob]

I'm writing this to help people out, and unite. I think people will agree with what I have to say, but 'forgot' we knew all along, as (per usual), no one helps us out as patients, and we have to do all the work ourselves, due to the people who are meant to help us (government specialists) focusing on fatigue - and thus, the title of this thread immediately to (most people with CFS who are female) would seem weird, but to males with CFS would seem honest.

6) ......One exception to this is male impotence or ED. Men are now less shy to discuss this problem, which is you have ME CFS and are male, ED is likely to not be that a rare occurrence because normal functioning of the Autonomic Nervous System is required for male sexual arousal to work adequately for intimacy. Women are saved from this, and don't have to 'perform' to have sex, unlike men. NB: For those who may not have considered the obvious, if you cannot 'feel' your bits, then your bits won't 'work' due to lack of stimulation, which actually then means not only is pain an issue, but reproduction ability - so a serious matter.

I agree with most of the points you raise however with point 6 - this may be how guys like to think about things (that they are the ones who have to perform and women are always ready and waiting) but nerve function is very important for women's sexual functioning and nerve damage eg. neuropathy from diabetes has profound effects on a woman's sexual functioning in terms of arousal, dryness, loss of orgasm, loss of libido and pain such that they may not be able to have sex.

This is well documented in the research literature but less so in the clinical literature where the focus is all on ED in men. I had to fight with NHS Choices editors some years ago to get female sexual dysfunction added to the list of complications as they only focused on male erectile dysfunction. http://www.nhs.uk/Conditions/Diabetes-type1/Pages/Complications.aspx (updated to reflect issues for both genders).

I just wondered reading this thread - does everyone who experiences numbness have okay hormone levels eg. thyroid, testosterone etc? I used to get weird numbness in my hands and feet (which I assumed was a diabetic complication) but I don't get it at all after starting on T4+T3 combo thyroid replacement.

 

[lauluce]

It is most likely coxsackievirus B4, by my symptoms and blood tests (performed using the plaque reduction neutralization test, which is the only blood test that, by Dr Chia's research, can reliably detect chronic coxsackievirus B infections).





This is similar to me: my mild sensory symptoms and major body-wide paresthesia symptoms occurred after a few months with the virus; but it then took another 2 years before I developed proper ME/CFS (although some mild fatigue symptoms were there even in the early stages of this viral infection).

I was also able to observe the effects of my virus on other people, as many friends and family caught it (my virus produced some characteristic physical symptoms, so it was easy to know who had caught it). Three people had a heart attack on first catching the virus, in one case, followed by chronic viral myocarditis. Coxsackievirus B is a common cause of chronic myocarditis, and is associated with heart attacks.





That sounds quite possible, though your skin numbness and skin sensory symptoms could be due to the same infection that later triggered your ME/CFS.

This is what I believe happened in my case: the suspected coxsackievirus B4 I caught first triggered some peripheral neuropathy in me, and then later triggered ME/CFS. It is not unusual for the same virus to cause more than one disease or condition in the same patient.

I had several different medical conditions triggered by my virus, including: chronic paresthesias, loss of smell, sudden onset periodontitis, strange crêpe paper-like wrinkling of the skin, sudden onset abdominal obesity (central obesity), and sudden onset of neuropsychological symptoms such as anhedonia, and generalized anxiety disorder.

All of these appeared before my ME/CFS took hold. I detail the symptoms of my virus on my website.

oh, i developed decreased sense of smell and taste too, anxiety and eventually OCD. Is good to know that somebody has a similar story to mine, I long have wished to test for virus including the one you mention, but I'll be able to do that as soon as I got the money. I used to have enough resources for taking any test when I lived with my mother, but now that I've got my own family and a son, it's diferent. Any luck treating coxsackievirus B4?

 

[lauluce]

oh, I checked and they do test for Coxsackie B 1 to 6, igg and igm, with IFI method. What do you think?

 

[lauluce]

I agree with most of the points you raise however with point 6 - this may be how guys like to think about things (that they are the ones who have to perform and women are always ready and waiting) but nerve function is very important for women's sexual functioning and nerve damage eg. neuropathy from diabetes has profound effects on a woman's sexual functioning in terms of arousal, dryness, loss of orgasm, loss of libido and pain such that they may not be able to have sex.

This is well documented in the research literature but less so in the clinical literature where the focus is all on ED in men. I had to fight with NHS Choices editors some years ago to get female sexual dysfunction added to the list of complications as they only focused on male erectile dysfunction. http://www.nhs.uk/Conditions/Diabetes-type1/Pages/Complications.aspx (updated to reflect issues for both genders).

I just wondered reading this thread - does everyone who experiences numbness have okay hormone levels eg. thyroid, testosterone etc? I used to get weird numbness in my hands and feet (which I assumed was a diabetic complication) but I don't get it at all after starting on T4+T3 combo thyroid replacement.

I've got hashimotos thyroiditis (antibodies confirmed), but my T3 and T4 levels are normal thanks to the medications

 

[JamBob]

I've got hashimotos thyroiditis (antibodies confirmed), but my T3 and T4 levels are normal thanks to the medications

Do you feel properly medicated - as opposed to "normal" (somewhere in the reference range). I just ask because in the UK they consider normal as all kinds of things (my TSH of 7 was "normal" according to my doctor).

 

[Hip]

oh, I checked and they do test for Coxsackie B 1 to 6, igg and igm, with IFI method. What do you think?

IFI, is that the same as IFT (immunofluorescence test)? I really don't know how sensitivity it is. Dr Chia always uses the neutralization tests at ARUP Lab and Cambridge Biomedical to test for coxsackievirus B and echovirus.

Any luck treating coxsackievirus B4?

Dr Chia's standard treatment for coxsackievirus B is oxymatrine, but this does not work for everyone, and did not work for me.

I did find high dose selenium very effective for improving ME/CFS fatigue and brain fog, possibly through its antiviral effect on coxsackievirus B.

 

[lauluce]

Do you feel properly medicated - as opposed to "normal" (somewhere in the reference range). I just ask because in the UK they consider normal as all kinds of things (my TSH of 7 was "normal" according to my doctor).

I take 200 ug of levothyroxine, the doctors I visited raised it progressively as the years passed and my thyroid worked less and less. By now my thyroid gland must be almost "dead". And yes, I tried taking even more levothyroxine to raise my t4 levels as high as possible inside the normal range, but that didn't improve a single symptom.

 

[lauluce]

IFI, is that the same as IFT (immunofluorescence test)? I really don't know how sensitivity it is. Dr Chia always uses the neutralization tests at ARUP Lab and Cambridge Biomedical to test for coxsackievirus B and echovirus.

Yes, it stands for immunofluorescence test, I doubt I can find another kind of test in my country, Argentina

 

[Hip]

Yes, it stands for immunofluorescence test, I doubt I can find another kind of test in my country, Argentina

An immunofluorescence test might be fine. There is some discussion comparing the immunofluorescence test to the neutralization test in this post.

The immunofluorescence test probably will not tell you which of the 6 coxsackievirus B serotypes you have (CVB1 to CVB6), but will just tell you whether you have an active CVB infection or not. Whereas the neutralization test tells you specifically which out of the 6 coxsackievirus B serotypes are active infections in your body.

But neutralization tests are hard to find. I mailed my blood serum to the Netherlands to be tested by a lab in Utrecht, which provided a good value for money neutralization test. Unfortunately this lab stopped doing their neutralization test. So now the only lab in the world that I know which offers a neutralization test for coxsackievirus B is ARUP Lab in the US. But their test is very expensive, $440 I believe. And another $440 for the echovirus neutralization test.