Re: Possible stop to Multiple Sclerosis could be just one trial away, however, pharmaceutical companies not interested

[Guest guest]

Thanks for posting. I had never heard of that specific protocol before at s

Hopkins. I only knew that chemo is sometimes used in progressive cases.

Generally I don't like the idea of chemo and wiping out the entire immune

system, but I am also of the mindset of " whatever works " and if the results are

as good as they say, then this sounds promising.

>

> Â

> A Utah woman is about to begin a medical journey that she hopes will save her

life. Colledge has Multiple Sclerosis, a disease

[Guest guest]

How does one find out aoout such clinical trials in advance?

.....I haven't been a big fan of Western medicine, both because in terms of MS

what they offer really doesn't seem to show much efficacy in studies

(Interferons reduce attacks only by 30% and have lots of side effects) and in

general because of all the medical errors and things that are given or approved

by the FDA that make us sick in the first place, such as vaccines, amalgams,

aspartame, and all the drugs....But on the other hand if something comes along

that truly has a 90% success rate, I don't want to dismiss it either, especially

since I haven't been able to make much improvemnent with the natural and

alternative paths.

So anyway, how does noe find out about these studies in advance? Anyone know?

Thanks,

> > Â

> > A Utah woman is about to begin a medical journey that she hopes will save

her life. Colledge has Multiple Sclerosis, a disease

>

[Guest guest]

Wow, when I first read this I was so heartened and excited that just maybe 1 of

the western medicines would help us. But then I was sickened, although not

surprised, to read the pharmaceutical companies' response!! I cannot believe

that they would be willing to sacrifice all our lives just because they may not

be able to get a patent or make as much money. Does no one have a heart in this

world!?!?! Outrage and anger is what I feel, there are SO many of us that would

have loved the chance to participate in this!!

I'm doing quite a bit better with the BBD, LDN and my supplement/vitamin regime,

and for that I'm SO thankful...no attacks since I started taking the right dose

of LDN in July, but I still cannot walk long distances due to the many many

attacks and 30 some lesions I've collected in the 10 years with this disease.

I'm only 31 years old, my life is just getting started....I want to live it to

the fullest and it angers me to think that I won't be able to do simple things

like take my nieces to the zoo this weekend. I pray that God will perform a

miracle with this if it is his will to heal us.

Thank you so much for sharing this valuable information. God bless all of you!!

Gisselle

>

>  

> A Utah woman is about to begin a medical journey that she hopes will save her

life. Colledge has Multiple Sclerosis, a disease that causes paralysis,

blindness, and sometimes death.   s Hopkins is testing a new treatment for

this debilitating disease that so far, is dramatically effective.

Colledge has been accepted as part of the study of this new and very aggressive

treatment.

> was diagnosed on Valentines Day 2007. She says, “The only way to

describe those first couple of months was absolute terror, and crying at night

for several hours, and just thinking my life was over.â€Â  The young mother

developed lesions on her brain and spine, her own immune system, charged with

protecting her, had turned against her and become the enemy. Dr. Adam Kaplin,

M.D. from s Hopkins explains; “What these people have, are these periods

of time where their brains, spinal cords and their optic nerves are under attack

..â€Â  He says no one knows why it happens, but doctors believe the immune

system is tricked in reaction exposure to bacteria, viruses, or even a vitamin D

deficiency.

> can’t pinpoint a trigger for her MS, but she says each attack takes

away the ability to live a normal life. “When I say attacks, I am not talking

about, oh, I woke up and I wasn’t feeling well. I lost something. I would stop

being able to walk, or I would lose my eyesight.†She has regained those

abilities, but the MS has taken its toll on her balance, she has lost feeling in

her hands, and they shake, making it difficult to hold objects, or her own

daughter. “My daughter is four years old and I don’t know if she will ever

know who her mom is. She may just see what the disease has left behind.â€

> But because ’s MS is progressing so rapidly, there is new hope. She

has been selected for a clinical trial that could dramatically change her life,

and the lives of everyone battling Multiple Sclerosis. s Hopkins has found a

way to erase a faulty immune system. Dr. Kaplin says it’s a little like what

you do to a computer. “It resets the immune system. We think of it as kind of

the control, alt, delete of the immune system.â€

> will undergo intense chemotherapy using a strong drug developed

decades ago. Dr. Kaplin says “We use it at 14 thousand milligrams, in one

treatment, over the course of four days.†And when it’s over ’s

old immune system will be gone, and so will her MS. “You watch the patients

white blood cell count go to zero, and then something amazing happens, which is

their cells start to repopulate and eventually the white blood cells come back

to normal.â€

> Patients are given an additional medication that along with the chemo, puts

them into long term remission. So far, out of 40 patients who have participated

in the study, 90 percent have shown no signs of the disease one to three years

after their treatment.  For some, the symptoms of MS have also disappeared.

“We had one individual who needed a walker to get around and he now runs five

miles every morning.â€

> is nervous to begin the journey to living MS free, but she’s

excited about what it will mean to her and her family, as well as others who

battle the disease. “This is a chance for  me and it should not stop with

me.â€

> Unfortunately, it could. believes she is the last patient accepted

into the second of s Hopkins clinical trials, and it may be the last. Dr.

Kaplin says that although the first two trials were exceedingly promising, and

no side effects were reported, outside of the usual reactions associated with

Chemotherapy, there may be no more opportunity to test what could prove to be

the cure for MS and other autoimmune disorders. “We need to do a randomized

clinical trial, a much larger trial ,between 150 and 300 patients. It’s a very

expensive process. We need 15 million dollars to get this done.â€Â 

> Without the trial, there can be no FDA approval, and insurance companies will

not cover the cost of the treatment. “We have gone to three different

pharmaceutical companies and we have showed them the data, and asked them if

they would be willing to get involved in this. We’ve had the same response

from all of them. They all said it’s an amazing treatment, we have seen

nothing like it, this might one day lead to a cure for MS, if we could refine

it.  They say its fabulous, but we don’t think we could recoup our

investment, so it’s not for us.â€

> The problem Dr. Kaplin explains, is the drugs used in combination in this new

treatment are decades old, cheap, and the patents have expired. This means, it

is difficult for pharmaceutical companies to make a profit.

> s Hopkins has started a grass roots campaign to try to raise the money.

>

>

>

>

>

[Guest guest]

Hi Lydia, what does CCVI stand for? And what is done in this procedure? I think

I am behind with all the messages about this. Hope you don't mind filling me in.

Sent from my Verizon Wireless BlackBerry

Re: Possible stop to Multiple Sclerosis could be just one

trial away, however, pharmaceutical companies not interested

the CCVI proceure stops MS progression. Anyone who has had the proedure to date

have had 0 relapses. I am scheduled too have the procedure next tuesday. Mo

chemo. No. drughs. No worsening of disability....Lydia

>

> Wow, when I first read this I was so heartened and excited that just maybe 1

of the western medicines would help us. But then I was sickened, although not

surprised, to read the pharmaceutical companies' response!!

[Guest guest]

the CCVI proceure stops MS progression. Anyone who has had the proedure to date

have had 0 relapses. I am scheduled too have the procedure next tuesday. Mo

chemo. No. drughs. No worsening of disability....Lydia

>

> Wow, when I first read this I was so heartened and excited that just maybe 1

of the western medicines would help us. But then I was sickened, although not

surprised, to read the pharmaceutical companies' response!!

[Guest guest]

Hi Bianca

It's actually more frequently known as CCSVI (Chronic Cerebros(S)pinal Venous

Insufficiency)

More excellent information can be found easily (discussed and shown) on the

following sites:

http://csvi-ms.net/en

http://www.ms-mri.com/

http://www.thisisms.com/forum-40.html

I hope that helps!

'What we do in life, echoes through eternity.'

MARCUS AURELIUS (121 - 180 A.D.)

_________________________________________________________________

Want to know what your boss is paid? Check out The Great Australian Pay Check

now

http://clk.atdmt.com/NMN/go/157639755/direct/01/

[Guest guest]

Hi Lydia

Please keep us up to speed with how it all goes!

Fingers, toes, and eyes crossed that all goes as swimmingly as I believe it will

for you hun!

Soooo very excited for you - I probably shouldn't say that, but I am!

My thoughts'll be with you and my best and most positive energy will be with you

too!

'What we do in life, echoes through eternity.'

MARCUS AURELIUS (121 - 180 A.D.)

_________________________________________________________________

For more of what happens online Head to the Daily Blob on Windows Live

http://windowslive.ninemsn.com.au/blog.aspx

[Guest guest]

Posted on the This is MS discussion page -just thought this might be good to

access

for quick information!

CCSVI, Just the facts, ma’am

1. What is CCSVI?

Chronic cerebrospinal venous insufficiency... it’s a chronic (ongoing) problem

where blood from the brain and spine has trouble getting back to the heart. It’s

caused by stenosis (a narrowing) in the veins that drain the spine and brain.

Blood takes longer to get back to the heart, and it can reflux back into the

brain and spine or cause edema and leakage of red blood cells and fluids into

the delicate tissue of the brain and spine. Blood that stays in the brain too

long creates “slowed perfusion”...a delay in deoxyginated blood leaving the

head. This can cause a lack of oxygen (hypoxia) in the brain. Plasma and iron

from blood deposited in the brain tissue are also very damaging.

2.How is it related to MS?

Every MS patient tested so far has it. Over 500 MS patients in Italy have it.

They were tested by Dr. Paolo Zamboni. Forty five MS patients in the US have it.

They were tested by Dr. Dake. Six clinically defined MS patients and 3

probable MS patients have it in Poland. They were tested by Dr. n Simka.

1700 patients and controls are being tested for it by s Neurological

Institute at SUNY Buffalo.

None of the normal patients (controls) tested have it. None of the patients with

other neurological diseases have it. Only people with MS.

3. So???? Maybe the MS lesions cause this. Chicken and egg and all

that....right? Couldn’t the lesions do something to the veins?

Nope. We already have a couple of medical models for the process of Chronic

Venous Insufficiency in the brain and spine....because it happens in other

places in the body, and we’ve known about it for years.

a. Chronic Venous Insufficiency in the legs. This is a process which begins with

reflux and blockage in the veins of the legs. The deoxyginated blood can’t get

back to the heart, and it causes edema (swelling) and leakage of red blood cells

and fluid into the tissue of the leg. This creates petechiae (little blood

spots), iron deposition into tissue, or venous ulcers (really gross lesions on

the legs). It makes collateral veins (called spider veins) that try to take the

blood back, but can't.

b. Congestive Venous Myelopathy. This is a process where blockage in the veins

along the spine cause the veins to leak damaging red blood cells and fluid into

the tissue surrounding the spinal column. The result is demyelinating lesions on

the spine. Paralysis, balance and bladder problems result.

4. Well...that’s all fine, but I’m on an immune modulating medication, and that

will take care of this problem, right?

Actually, no. CCSVI has been found in all MS patients, whether or not they are

on immune modulating medication. A woman who underwent complete immune ablation

with Revimmune still had CCSVI with 2 blocked jugulars. My husband was on

copaxone for 2 years, but he had 2 blocked jugular veins. Dr. Zamboni tested

over 500 MS patients, many who were on immune modulating medication, and they

all still had CCSVI.

5. How can I find out if I have this?

There are a few different protocols, depending on where you live and what is

available. In Italy, Dr. Zamboni begins with a doppler ultrasound of the neck

and brain, to see if the blood is refluxing. Then he performs a venography. This

is where dye is injected into your veins to see the blood flow and possible

stenosis. s Neurological Institute is following this protocol. Dr. Dake at

Stanford is using MRV (magnetic resonance venography) followed by endovascular

venography to diagnose stenosis. Dr. Mark Haacke is using a combination of

SWI-MRI technology and MRV, but he also recommends doppler testing to confirm

reflux. In Poland, Dr. Simka is using doppler technology followed by venography.

As you can see, right now the diagnostic protocol is dependent on your location-

6. My neurologist read the research and said it’s impossible, that I can’t have

this. Besides, it's unproven.

That’s your neurologist’s opinion. This is just the facts, ma’am.

Ask yourself....are your neurologist’s opinions based on fact? Ask s/he what

they believe causes the MS demyelination process. And ask for the facts, not

speculation.

7. My neurologist says that MS is autoimmune, and he can prove it! I have

oligoclonal bands in my spinal fluid, and that shows my immune system is going

after my myelin.

Remind your neurologist that oligoclonal bands in spinal fluid also appear in

people with neurovascular disease- like stroke and dementia. It's a well known

fact that the immune system is activated to clean up after axonal death and

tissue damage in the brain. That doesn't mean a stroke is an autoimmune disease!

CCSVI causes damage to the brain and axonal death....of course the immune system

will be involved. But the immune system did not cause CCSVI. CCSVI comes first.

8. Yikes! If I have CCSVI, what can be done about it??

The good news is that Dr. Zamboni has been testing a procedure (the Liberation

procedure) in his Italian patients for two years. He goes into the femoral vein

endovascularly (thru a small incision at the groin) and goes up into the blocked

vein and opens it with a small balloon. He's done this to hundreds of patients,

and many have greatly reduced symptoms and healing. He's also done this

procedure on 18 MS patients who were in the hospital in the midst of bad

relapses. The relapse symptoms stopped and were reversed in 4 hours to 4 days

from having the balloon procedure...without steroids! Dr. Dake at

Stanford University has been using stents (metal tubes) to keep the veins open

if the ballooning does not keep the veins open. He also goes in endovascularly.

Patients have had reduction in fatigue, heat intolerance, spasms and some have

had improved vision and mobility. Dr. Dake has been performing these procedures

at Stanford since May. Dr. n Simka is overseeing these stenting and

ballooning procedures in Poland. Stay tuned! We'll have more to report in the

months ahead!

I hope this is also a help and may fill in some space/answer some questions

'What we do in life, echoes through eternity.'

MARCUS AURELIUS (121 - 180 A.D.)

__________________________________________________________

_________________________________________________________________

For more of what happens online Head to the Daily Blob on Windows Live

http://windowslive.ninemsn.com.au/blog.aspx

[Guest guest]

Hope it all goes well; I am sure it will.

Keep us posted you pioneer you!

Janet

To: mscured

From: lydia_rawlings@...

Date: Sat, 21 Nov 2009 16:26:17 +0000

Subject: Re: Possible stop to Multiple Sclerosis could be just one

trial away, however, pharmaceutical companies not interested

the CCVI proceure stops MS progression. Anyone who has had the proedure to date

have had 0 relapses. I am scheduled too have the procedure next tuesday. Mo

chemo. No. drughs. No worsening of disability....Lydia

>

> Wow, when I first read this I was so heartened and excited that just maybe 1

of the western medicines would help us. But then I was sickened, although not

surprised, to read the pharmaceutical companies' response!!

_________________________________________________________________

Windows Live: Friends get your Flickr, Yelp, and Digg updates when they e-mail

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[Guest guest]

www.ctv.ca

go to this site and see the report which will air US tonight on the procedure at

7pm (I think!).

If you're on facebook, it's being posted by nearly everyone with MS - tentative

hallelujahs abound!!

'What we do in life, echoes through eternity.'

MARCUS AURELIUS (121 - 180 A.D.)

_________________________________________________________________

Looking for a date? View photos of singles in your area!

http://clk.atdmt.com/NMN/go/150855801/direct/01/

[Guest guest]

Every now and again a subject comes up here that raises my hackles.

As a person new to MS I would have reacted exactly the same way but I have

learnt.

I now accept that mainstream medicine probably won't provide any cures,

certainly in my lifetime, and I'm not going to sit around waiting.

If it does, excellent, but it's not worth stressing and getting angry over it

which does no one in our condition any good.

From an old hand (14 years since diagnosis plus the inevitable years of MS

without diagnosis):

It has taken me all this time to realise -

Live life as well as you can. It is short enough, embrace it!

Accept that things are different since diagnosis and find ways around them.

Of course you CAN take your nieces to the zoo!

If you can't walk long distances anymore, get a chair.

I resisted getting one, I felt like it was giving in, " use it or lose it "

attitude but I am so glad I did and got my first one 9 years ago. It re-opened

my life, meant I could go around shops, museums or art galleries again and just

browse like everyone else instead of wearing myself out. You don't have to use

it all the time but can just be grateful that it lets you join in what others

are doing.

Learn your limits, don't waste energy on things that don't matter. If you live

with someone, re-distribute your chores to suit the situation.

My life is as full, well fuller, than it has ever been as besides doing much of

what I used to do but slower, I now draw, write, sew and spend loads of time on

here. In fact I do everything I can think of that you can do seated. When you

think about it, most of life can be had sitting without any losses. I never

used to walk or run as a sport or climb mountains - or put the rubbish out or do

the vaccuuming - I can't think of much else that requires standing so I'm not

missing much.

I expect to get some heated criticism of the way I think but maybe instead

others can add suggested ways of coping with MS rather than giving in to it.

If it's your mind - the right supplements will change that (as will MJ lol!)

Aches and pains likewise.

Optic neuritis - rest, remember you have other senses other than just sight and

don't stress about it - listen to music, listen to life.

The shakes or difficulty swallowing - again remove the stress, and look for ways

around the problem.

Constipation - read while you contemplate! If your eyesight isn't too good,

what a wonderful time to cop out for a while.

Falls are reduced more once you are safe in a chair.

You can still exercise with yoga/vibrogym/exercise bike/electric mini walker...

I could go on and on and I am sure all of us in this group have found/are

finding ways around the problems MS poses. It isn't so bad. At least we are

still alive, To the newbies amongst us, it is devastating, it is scary but with

the support of a group like this, GO FOR IT!

While I'm talking of finding ways around things, does anyone know if you can

replace the pedals on the s mini-walker with racing bike pedals so you

could wear racing bike shoes and your legs won't fall off the pedals?

Janet

To: mscured

From: gisselle_b@...

Outrage and anger is what I feel, there are SO many of us that would have loved

the chance to participate in this!!

.... it angers me to think that I won't be able to do simple things like take my

nieces to the zoo this weekend. I pray that God will perform a miracle with this

if it is his will to heal us.

Gisselle

_________________________________________________________________

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[Guest guest]

Well said. I feel the same way. You can choose to be happy or choose to be

miserable. I choose to be happy.

I used the thick elastic stretch bands (Thera-bands) to tie my feet to the

pedals of my electric pedal machine so that they don't slip off. I think elastic

and velcro might work too.

>

>

> Every now and again a subject comes up here that raises my hackles.

>

[Guest guest]

Hi Lydia,

 

Are you having the MRV done or the actual surgery next Tuesday?

 

Best,

 

Subject: Re: Possible stop to Multiple Sclerosis could be just one

trial away, however, pharmaceutical companies not interested

To: mscured

Date: Saturday, November 21, 2009, 8:26 AM

 

the CCVI proceure stops MS progression. Anyone who has had the proedure to date

have had 0 relapses. I am scheduled too have the procedure next tuesday. Mo

chemo. No. drughs. No worsening of disability.. ..Lydia

>

> Wow, when I first read this I was so heartened and excited that just maybe 1

of the western medicines would help us. But then I was sickened, although not

surprised, to read the pharmaceutical companies' response!!

[Guest guest]

Hi Lydia how exciting! Great for you! Please let us know how it all goes. Who

did you speak to, to get it done? Just excited for you - I wish you only the

best with it. You go girl! Bianca

Sent from my Verizon Wireless BlackBerry

Re: Possible stop to Multiple Sclerosis could be just one

trial away, however, pharmaceutical companies not interested

the CCVI proceure stops MS progression. Anyone who has had the proedure to date

have had 0 relapses. I am scheduled too have the procedure next tuesday. Mo

chemo. No. drughs. No worsening of disability....Lydia

>

> Wow, when I first read this I was so heartened and excited that just maybe 1

of the western medicines would help us. But then I was sickened, although not

surprised, to read the pharmaceutical companies' response!!

[Guest guest]

> I am scheduled too have the procedure next tuesday. Mo chemo. No. drughs.

No worsening of disability....Lydia

>

Good luck Lydia!!! We'll be thinking of you.

Crystal

[Guest guest]

Hi everyone

Here's the link to see the Dr Zamboni inerview and all the doctors' and

specialists' views shown in the CCSVI studies

http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20091120/W5_liberation_09112\

1/20091121?s_name=W5

Some GOOD news for once!!

'What we do in life, echoes through eternity.'

MARCUS AURELIUS (121 - 180 A.D.)

_________________________________________________________________

Download new and classic emoticon packs at Emoticon World Brought to you

exclusively by Windows Live

http://windowslive.ninemsn.com.au/emoticon.aspx?

[Guest guest]

Where are you getting this done and how long did you have to wait? I am so

excited about this procedure. How did you get involved? Many good lucks to you

and please keep us informed!!!

[Guest guest]

Thank you for posting this link. I scan through messages but there are so many

these days I don't read everything. When I first heard about a treatment for MS

that involved repairing veins it seemed like wishfull thinking. This now

actually makes sense! I've always felt that anything that comes and goes must

have a trigger. The LDN, the diets and other effective treatments are probably

controling the inflammation and maybe the deposition of iron. I live in Detroit

and I've found a pretty open-minded Neuro so I will definately be checking this

out. Thanks again, Marilyn

P.S. . . .And noone is getting rich off of it. Big Pharma must be having a

cow.

Hi everyone

Here's the link to see the Dr Zamboni inerview and all the doctors' and

specialists' views shown in the CCSVI studies

http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20091120/W5_liberation_09112\

1/20091121?s_name=W5

Some GOOD news for once!!

[Guest guest]

Thanks for the idea .

I'll try it in the interim of awaiting velco implants - I'm sure if I live long

enough, they will be an option

Janet

To: mscured

From: alpdesigns1@...

Date: Sat, 21 Nov 2009 20:46:17 +0000

Subject: Re: Possible stop to Multiple Sclerosis could be just one

trial away, however, pharmaceutical companies not interested

Well said. I feel the same way. You can choose to be happy or choose to be

miserable. I choose to be happy.

I used the thick elastic stretch bands (Thera-bands) to tie my feet to the

pedals of my electric pedal machine so that they don't slip off. I think elastic

and velcro might work too.

>

>

> Every now and again a subject comes up here that raises my hackles.

>

_________________________________________________________________

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[Guest guest]

 CAN OR DOES MULTIPLE SCLEROSIS MAKE A WOMAN NOT WANT OR BE ABLE TO PERFORM THE

ACT OF SEX?  I KNOW THAT AS A MALE  I AM INCAPABLE OF HAVING SIX EVEN WITH

MEDICAL HELP (CIALIS OR VIAGRA) AND THAT THIS SITUATION IS CONSISTENT WITH OVER

85% OF MEN WITH MS BUT DO WOMEN ALSO SEE THAT MS ALTERS THEIR " WANT " FOR OR

ABILITY TO PERFORM IT?

[Guest guest]

Hi guys

This was aired yesterday evening US and Canada time

www.w5.ctv.ca

watch with the same pleasure I did last night!!!!

'What we do in life, echoes through eternity.'

MARCUS AURELIUS (121 - 180 A.D.)

_________________________________________________________________

Want to know what your boss is paid? Check out The Great Australian Pay Check

now

http://clk.atdmt.com/NMN/go/157639755/direct/01/

[Guest guest]

I doubt many in this group will want to get into this but as far as I am

concerned, MS hasn't altered anything apart from things like spasms and cramp

that you have to deal with. There are ways around most things in life.

Janet

To: mscured

From: jarheaddad56@...

Date: Sun, 22 Nov 2009 08:33:45 -0800

Subject: RE: Re: Possible stop to Multiple Sclerosis could be just one

trial away, however, pharmaceutical companies not interested

CAN OR DOES MULTIPLE SCLEROSIS MAKE A WOMAN NOT WANT OR BE ABLE TO PERFORM THE

ACT OF SEX? I KNOW THAT AS A MALE I AM INCAPABLE OF HAVING SIX EVEN WITH

MEDICAL HELP (CIALIS OR VIAGRA) AND THAT THIS SITUATION IS CONSISTENT WITH OVER

85% OF MEN WITH MS BUT DO WOMEN ALSO SEE THAT MS ALTERS THEIR " WANT " FOR OR

ABILITY TO PERFORM IT?

[Guest guest]

Janet and many others if interested

I find as a female that sex for me was more about it being more

about pleasing the man more than me for decades. I think the possible

issue might be blood flow and find men have a harder time relaxing regarding

sex. I heard some men use postivac and find it helpful.

Antoinette

>

>

> I doubt many in this group will want to get into this but as far as I am

concerned, MS hasn't altered anything apart from things like spasms and cramp

that you have to deal with. There are ways around most things in life.

>

> Janet