Free Flow Discussion about POIS

[demografx]

My hunch/theory (just speaking for my POIS) is that the refractory period is somehow associated with POIS.

The faster the RATE of replenishment, the LESS POIS - and Levitra perhaps aids the process, thereby ameliorating the POIS - in my case from 80% to 90% and higher, with mood meds boosting me to 100.

Wish I were a clinician! I have no patience for diaries but what I'm telling you about is over many years experience. But not 100% consistent, so I don't plan on writing a book.

I've heard the vasodilation explanation before, it makes sense. Wonder if vasodilation AND refractory rate are somehow both implicated? Not necessarily in tandem.

[demografx]

THANK YOU!!

FOR THE RECENT $400.00 DONATION!!!!!!!!

[Daveman]

WOW $400!

That puts us well over $12,000, can you believe it?

That $400 must have hurt. One of us cares enough to go that far out. And I know, almost any amount hurts!

Perhaps not as much as POIS. POIS is continuous, or at best 50, 60% of the time. Even a monthly donation only hurts for a day, maybe 2.

Thank you Mr. Donor, and for all of those who have helped us get to $12,312. Come on, we're getting there! To freedom.

[demografx]

the praise is great guys but i was just trying to make due on the 700 i prosmise which is small compared to others

THANK YOU, CertainlyPOIS FOR THE $400.00 DONATION!

[demografx]

My 3 Hour Meeting Today with the celebrity actor, "Squiggy" of "LaVerne and Shirley" TV fame. He is  David L. Lander

Edit: David's website is http://DavidLLander.com/

Thank you CertainlyPOIS, Stefanie/nordnurse, Daveman, and others for encouraging me to do this!




The purpose of our meeting today was to re-acquaint (we were friends in HS days in New York when he was still David Landau.)

And to discuss POIS and similarities with David's experience with MS. He was most encouraging and was impressed that we raised over 1/3 of our goal without ever meeting each other.

IT TOOK DAVID 15 YEARS BEFORE HE WOULD "COME OUT" AND ADMIT HE HAD MS.

SOUND SIMILAR?

As a start, David is making available to you all the free 10 chapter audio book set, called "Fall Down Laughing" - pictured above. If you want a set send me a PM with your name+physical mailing address.

David L. Lander's memoir Fall Down Laughing chronicles his life story hiding multiple sclerosis from the public for 15 years. And it is F U N N Y !!!

Best known for playing "Squiggy" on the television hit "Laverne & Shirley", David L. Lander has appeared in dozens of television shows and feature films including Who Framed Roger Rabbit? and A League Of Their Own. Lander was honored by the National Sclerosis Society as their Ambassador of the Year in 2000.

[Daveman]

Thank you very much David Landau for this generous offer!

There always seem to be so many reasons NOT to talk about our problem! I'm sure your "gift" will help us to make an important step in our lives.

I'm going to start "coming clean" from today forward!

[demografx]

"coming out" might be painful, but the rewards, as Squiggy, Observercenter, nordnurse, and Daveman reported, can well be worth it.

I still refuse to tell anyone

[kurtosis]

Thank you very much David Landau for this generous offer!

There always seem to be so many reasons NOT to talk about our problem! I'm sure your "gift" will help us to make an important step in our lives.

I'm going to start "coming clean" from today forward!

The big problem with "coming clean" as a POIS sufferer. The medical community don't recognise POIS so you're as likely to be labelled someone with an anxiety or psychosexual problem as a disease. My aunt has MS. it's awful and I wouldn't wish it on anybody but there's no doubt about what she has.

Even if POIS was an accepted diagnosis, I'd only share it with colleagues on a need to know basis. Perhaps human resources or a senior manager as it is difficult to hide and some companies insist you notify them of illnesses in your employment contract.  POIS has the double stigma of a sexual disorder and a disease that affects cognitive ability and judgement. Discussing it openly is a tough call.

[Daveman]

At work is a tough call, and each case would have to be carefully considered I think.

I'm going to start with the in laws and near family. I don't have the problem that they can accuse me of being lazy (with chores or whatever) and using POIS as an excuse.

We live with the in-laws (mother in law elderly sis-in-law single Mom). So they will now know every time we have sex. Will be able to "understand" the weird things we do to hide the niacin rituals, pre-sex fasting etc. etc. but it's a start.

I have to convince my wife now!!

[Daveman]

Wow another donation for $200 came in!!

I understand it came from someone who had already started an automatic $50 per month donation, so this is above and beyond!! Good Going! I can’t say how much it is appreciated, and the good that it will do.

We MAY be able to find a cure by ourselves, for most of us, but the fund will get it into the books and hands of doctors! Even if we do it ourselves, our small hard to find group will be the only ones to get it. With these donations, we will bring it to the medical community. We open the doors to ALL the POIS sufferes in the world.

Feel GOOD about your donation! You ARE doing something for ALL of us.

Thanks!

[demografx]

Thank you very much David Landau for this generous offer!

There always seem to be so many reasons NOT to talk about our problem! I'm sure your "gift" will help us to make an important step in our lives.

I'm going to start "coming clean" from today forward!

The big problem with "coming clean" as a POIS sufferer. The medical community don't recognise POIS so you're as likely to be labelled someone with an anxiety or psychosexual problem as a disease. My aunt has MS. it's awful and I wouldn't wish it on anybody but there's no doubt about what she has.

Even if POIS was an accepted diagnosis, I'd only share it with colleagues on a need to know basis. Perhaps human resources or a senior manager as it is difficult to hide and some companies insist you notify them of illnesses in your employment contract.  POIS has the double stigma of a sexual disorder and a disease that affects cognitive ability and judgement. Discussing it openly is a tough call.

kurtosis, you have described the conflict superbly!

But look at MS "embarrassment". POIS is more similar to MS than to HIV/AIDS, which is most often SEXUALLY transmitted.

I see many similarities in David's embarrassment to ours. We can still learn from him even though ours is "sexual".

Lets look for the similarities, not the differences.

[kurtosis]

Thank you very much David Landau for this generous offer!

There always seem to be so many reasons NOT to talk about our problem! I'm sure your "gift" will help us to make an important step in our lives.

I'm going to start "coming clean" from today forward!

The big problem with "coming clean" as a POIS sufferer. The medical community don't recognise POIS so you're as likely to be labelled someone with an anxiety or psychosexual problem as a disease. My aunt has MS. it's awful and I wouldn't wish it on anybody but there's no doubt about what she has.

Even if POIS was an accepted diagnosis, I'd only share it with colleagues on a need to know basis. Perhaps human resources or a senior manager as it is difficult to hide and some companies insist you notify them of illnesses in your employment contract.  POIS has the double stigma of a sexual disorder and a disease that affects cognitive ability and judgement. Discussing it openly is a tough call.

kurtosis, you have described the conflict superbly!

But look at MS "embarrassment". POIS is more similar to MS than to HIV/AIDS, which is most often SEXUALLY transmitted.

I see many similarities in David's embarrassment to ours. We can still learn from him even though ours is "sexual".

Lets look for the similarities, not the differences.

Oh absolutely, I'm not knocking the idea or getting support from a celebrity. Particularly not someone who has bravely dealt with a horrible illness and provided both humour and relief to other sufferers. That's not my intention at all. But we need to be careful before we consider "coming out" to people as POIS sufferers. There are many jobs that would immediately suspect your judgement was constantly impaired and that's the best case scenario where they believe this is a real illness and not a psychological fabrication. Whatever people say about "psychosomatic illnesses being real for the sufferer", they cannot get beyond their belief that the person is suffering from mental illness and thus all their reasoning is potentially faulty.

If they don't believe this is a real illness, they may assume some kind of nervous breakdown. So I think we should postpone the coming out to anybody except close family UNTIL we have an accepted diagnosis that means our sanity cannot be questioned when we say we have this disease.

[demografx]

Thanks, kurtosis!

[Daveman]

I think this is where the real value of the research lies.

Once we are "defined" we are more like an MS patient and not a mental case

It makes it more official.

[demografx]

"Mental case"...yes, a perfect way to depict us in the eyes of "the blind professional"

Sheesh. The public will be slow to understand us. But yes, Dave, we need to get research into the hands of DOCTORS first!

Let the understandings begin!

[kurtosis]

I think this is where the real value of the research lies.

Once we are "defined" we are more like an MS patient and not a mental case

It makes it more official.

Totally. I have 2 goals in life. 1) to be completely cured of this thing or at least so cured that I never have to worry about it again. 2) for the illness to be an accepted diagnosis in which case I can tell people that I have/had that and how I'm dealing with it. I'm happy to take that risk but only when I have a diagnosis I can point to. As it is, I could have anything from hypogonadism (seems unlikely) to hypothyroidism (seems more likely) to viral/bacterial/parasitic infection. And lots of stuff in between like genetic disorders in the synthesis of proteins. The problem is that any disease that affects homeostasis of hormones or neurotransmitters can appear the same.

If I get diagnosed with something (even if it's not specifically POIS) then that's positive . The only thing I know is that I have a gluten sensitivity which can be associated with thyroid problems as there's a huge chemical similarity between some of the thyroid tissue and one of the proteins in gluten. The idea is that your body may start off producing antibodies against gluten proteins but these may attack thyroid tissue producing a hypothyroid effect. Whether this could lead to the kind of problems we're seeing with POIS, I don't know. But for a disease to be rare, all it would take would be one problem that's compounded with another problem thats rare (a relative concept of course) and then you get weird symptoms.

POIS is an interesting name for this as it implies it's a syndrome. It may remain a syndrome without a clearly understood aetiology or, hopefully, it will progress to being a fully understood disease in which case the name would have to change. But progressing to the "disease" stage could be really difficult as that would mean that we have  clear understand of the causes of the disease, its mechanism of action and the physiological changes it produces. There is still some stigma  attached by doctors to syndromes (unfortunately as the name syndrome does not deny the physiological effects) but nobody is going to argue with a diagnosis of a disease. This may be a long road but I look forward to both diagnosis and cures so nobody has to have their lives ruined by this illness again.

[Daveman]

In light of all of this everybody, have a look at the Research Fund Total.

It was recently upped by $1000 in ONE donation! Congratulations to the donor who ever (s)he is and congratulations to the forum.

$1000 doesn't come easy! I can't express how much it means to see it come in.

$13,512. I remember when we worried if it would reach $2000!

Thank you everybody!

We need our name, the name of POIS or POID  (for disease!) on the board, and this will do it.

We will, one day, walk into the doctor's office and say, "I feel like CRAP after orgasm doc!", and he will say,
Ahhh yes, you have POIS, take one of these 2 times a day, and call me in 2 wks.

[demografx]

Beautifully said, Daveman! Thank you, $1,000 Donor!

[demografx]

I look forward to both diagnosis and cures so nobody has to have their lives ruined by this illness again.

kurtosis, this is exactly what has kept me involved with the forums since 2007.

[demografx]

As a start, David is making available to you all for free: his 10 chapter audio book set, called "Fall Down Laughing" - pictured above. If you want a set send me a PM with your name+physical mailing address.

I'm sorry: I know that your privacy (sending in your physical mailing address) can be an issue! (It ALWAYS has been for me.)

One idea: use business address?
Another: use your initials only?
Another: use a box number?

Go through NORD? (nordnurse would have to approve this one)

Any ideas to circumvent this, I - and Squiggy - would be happy to oblige.

The book will make you laugh at your own privacy issues.

Better than dying from them IMHO!!