The Mystery Journey~Multiple Sclerosis

A Different Way~So You Will Know~So You Can Decide! Stay Strong! Stay Healthy!


~Colby's MS Story~ A Teens Journey!

NEW STORY~ From Kim~Colby's Mom~

I don't see too many familiar faces around here anymore, but I was
thinking about all of you, and thought I should stop by and give you
an update.

For those who don't know me, I have an 18 year old son who was
diagnosed with MS 5 years ago. We had a rocky road the first two
years on Avonex and Rebif, and when they started talking Novantrone,
I found out about LDN.

My son lost 2 years of his teenage life on Avonex and Rebif. The
interferons made him feel so bad, and he was so depressed that he
became a total recluse. Meanwhile, he had one attack after another
while on the interferons, and his health deteriorated to the point
the doctors labeled him as PPMS.

Getting rid of that doctor and getting him on LDN was the best move
we ever made. He has been taking it for 3 years, now. For the past
2 years, he has used it with Copaxone every other day, simply because
his neuro won't prescribe the LDN unless we use the Copaxone as well.
(We acquired his LDN from a phone consult for the first year, and he
took LDN alone...)

With each check up he has had since starting the LDN, he has
improved. At his last check up this past week, the nurse
practitioner could not believe how his gait had returned to
completely normal. For myself, I cannot believe how his LIFE has
returned to normal! He has not had an MRI since starting LDN...He
hasn't needed one, and his doctor does not put much stock in them,
anyway.

He graduated high school last spring with honours, after struggling
through the first two years of his diagnosis on the interferons with
almost failing grades - I truly believe the only reason he passed
from one grade to another was because the teachers felt sorry for
him. He is now attending college, winding up his first semester, and
will have a degree in radiology once he completes his education,
unless he changes his mind. He is working full time (even though I
beg him to cut back, this kid loves his money, and so does his
girlfriend!) managing a GNC in our home town. He feels great, he
looks great, and you would never know that we were told 5 years ago
that he would be in a wheelchair by this time.

So many people here helped me immensely when we first started
learning about LDN, so I thought those of you that were still around
here had the right to know how he is doing. I'm sorry that I haven't
been more diligent about this.

If there is ever anyone with a young child with an MS diagnosis, and
they need to contact me, I hope they don't hesitate to do so. 

Contact Info For Kim>  petessweetheart@yahoo.com



 

~My Name is Kortney~

My name is Kortney; I am a 29 year old woman with Relapsing Remitting MS. I was diagnosed in March of 2003 although I had symptoms all the way through college. When I was first diagnosed I had optical neuritis in both eyes as well as several other problems. My first year with MS I took rebif however I did not tolerate it very well. I changed neurologists and the new one put me on Avonex. The side effects from the Avonex were a nightmare but I tolerated it because my neurologist told me that was the best thing for me. Even on the Avonex my MRI’s every year always showed signs of progression. I also have consistently had to do steroids every two months in order to function enough to work. I teach elementary school music and my students need me to stay on my toes. I get vertigo so bad I need to hang on to a wall to walk. In January a good friend discovered LDN and made a point to email me the information and then call me and tell me about it. I was a little bit skeptical because they also told me Avonex was the best thing for me. I was also skeptical because anyone with MS knows that friends and family are always trying to help and telling you about these amazing things that help people with MS, except it’s always garbage. However my friend’s enthusiasm about LDN was contagious. I spent a couple of months researching LDN and the more I researched the more optimistic I was about trying it. I talked to my family doctor and he spent a couple of weeks researching it and then was happy to prescribe it for me. I have been on LDN for a little over two months. For the first little while I was having a lot of transient symptoms and I was not feeling well at all. The last couple of weeks all of the symptoms have gone away and I feel a lot better. My bladder problems have not disappeared but they have improved. I have a lot more energy, I can teach a full day of school and come home and do other things. I used to be so tired I would go to bed really early. I have also passed the 2 month mark without having to do steroids. I recently went to the eye doctor and although the prescription for my contacts has gotten worse my visual acuity has improved. I have heard that it takes six months for the LDN to fully kick in. I am feeling so good right now I can’t wait to see how I am feeling in 4 months. I cannot express how grateful I am that my friend told me about LDN and how happy I am to be off of the avonex and away from the side effects.

~Bill's Story~

 
My name is William (Bill) Roberts; I am 57 years old, was diagnosed with RRMS in 1998, and upgraded to Secondary Progressive in 2002. My chief symptoms are (were) extreme mixed sleep apnea, COPD, inability to walk, total deafness in my left ear, and inability to concentrate for any period of time. I have been treated with Avonex, Copaxone, and Rebif of the ABCR drugs, chemotherapy (Cytoxan, plasma exchange, as well as many many sessions of IV steroids (Solumedrol). As of june, 2005, I was on oxygen 24/7, wheelchair bound, having a flair of my MS on an average of once a month, and doctors had told me that my breathing difficulties, caused by the MS, would ultimately result in my demise. I had also ballooned in weight to 289 pounds. Two of the top neurologists in Birmingham consulted and agreed that, while continuing on rebif, I should begin taking a week of IV steroids every three months, regardless of my condition. I did not feel that the steroids were offering enough positive results any longer, and I did not want to take any more. I asked if they would mind my getting an alternate opinion from another neurologist. They agreed.
My new neuro reran all of the standard MS tests, including MRIs. After studying the results, she suggested I stay on the Rebif and see what the next two months showed with regard to flares or episodes, then to probably go back on chemotherapy. I asked her, at that time, if she would prescribe a drug LDN (Low Dose Naltrexone), for me. I had read a great deal about it and talked to a number of MS sufferers who had improved with the use of LDN, a medication that is FDA approved as a treatment for Heroin addiction and alcoholism. She said she had never prescribed it but had also read a lot about it. She agreed to prescribe it.
I began, around the first of July, 2005, with 1.5 Mg per day for the first week, then increased to 3.0 Mg from then, on. I also stopped taking the Rebif at that time. While I did not notice any improvement for the first three months, I also had NO flares either. Then, I began to notice that my breathing was improving- I could take time off from the oxygen for extended periods of time; the strength in my legs and arms was improving- I began to be able to take short walks with a walker, then longer walks, then changed to a cane, then actually walked to the bathroom without assistance! My sleep began to improve, as well. Improvement continued and actually increased, so that when I went for my six month check-up with my neurologist, I did not even take my cane, and I blew away my neuro by acing all the tests. I am now driving again after four years, walking totally without assistance, and have dropped my weight down to 232 pounds. I hope to get back to my normal weight of 195 by year's end.  In April, after my wife was dxd as a borderline diabetic, I walked in a “Walk For Diabetes.” I walked just over 21/2 miles, with no assistance, beginning with the first group out and finishing with the first group in! I was both pleased and proud to accomplish something  else I never thought I would be able to do again. Now, I plan to spend the summer building a fence in our back yard and relandscaping  it.
LDN is NOT a cure for MS. I still have it, and I still have issues with it that I have to deal with everyday, but I attribute my miraculous improvement to LDN, attitude, faith, and my new neurologist's willingness to prescribe LDN for me. It is allowing me to do things I never thought I would be able to do again, and if it were to become an approved treatment for MS it could not only possibly do the same for others that it has done for me, but it could also possibly free up millions of dollars that could be used to find the cause of diseases such as MS. Finding the cause for a disease  brings researchers MUCH closer to finding a true cure.
Pharmaceutical companies need to be able to make a profit off of the drugs they develop through their research. The cost of  such research is very high, and  LDN, a very inexpensive medication, will not produce the profits those companies need in order to warrant their doing the trials to get it approved for MS, as well as ALS, Alzheimer’s, Parkinson’s, AIDS, Crohn’s, many types of cancer, child autism, and even Rheumatoid arthritis. That is why the Sylacauga Fire Department has agreed to assist me and a nationwide group  in raising the funds we need to get trials underway that can lead to LDN’s FDA approval as a treatment for MS. We are going to be collecting on September 16, and I hope the wonderful people of our area will open their hearts (and wallets) for this worthy cause.
Websites-
http://www.lowdosenaltrexone.org  and http://www.ldners.org
 
Thank you. Sincerely,
William (Bill)
Sylacauga, Alabama 35150
256-245-4627
bmr323@hotmail.com
 
 

                                                  Paul Nicholas and LDN

It was Jan, 1st. What a way to start the new year… I woke up breathing very shallow, had bad vertigo, could not swallow normal, too weak to stand, could not walk, I could barely speak, I could go on and on. Every MS symptom I had ever read about, I had. I thought I was safe and this would not happen to me. You never think that after college this would be your fate.

My family and I were so desperate for answers and didn’t get any.

It was not until I was re-reading fan mail I had received after I was on the Montel Williams talk show with my new MS benefit album “Remember me forever” that I had found out about LDN. The more I read about it, I could not believe. I went on a few weeks with little improvement and then I went to the www.LDNinfo.org website and got more info. I then called Dr. Bihari of NYC for a visit. My story is not different then any others on LDN. I started it and in two weeks I started seeing improvement with my bladder. No one wants to talk about that, especially me haha. The truth is I had not had a good night sleep in about 4 years. I would get up many times at night to use the bathroom and after I started LDN I would sleep through the night and still am. That itself was amazing. I would normally use a drug for more control but that made me anxious,dizzy and your not going to believe this side effect:Lower limb fatigue. Now why on earth would you give someone with MS lower limb fatigue.

As time went on my swallowing became more normal followed by my ability to walk a little. Now (3 weeks later) I have no MS symptoms. I am walking slowly on the treadmill and speaking clear and fluent. I just can’t convey what a miracle Dr Bihari’s research is to me. LDN works. LDN works Good and has NO SIDE EFFECTS.

When I found out about the conference I wanted to be involved. I have received thousands of emails from concerned, frightened individuals with MS from around the world that are looking for answers. It hurts me to think that they do not know about this. I believe that everyone faced with this challenge should have this information. I hope that the conference is a platform for people to learn what LDN can do for them and also realize that they have another choice. This is a treatment that is non-invasive and very effective. I hope that it brings people closer to real life stories of others who manage their MS with this drug. Reading about it is good but hearing about it in person can inspire you to make a change. I hope the LDN conference changes people’s minds.

For more info on me go to>> www.paulnicholasonline.com

 

Thanks

~Paul Nicholas Update From Jan. 2006~

Update on Paul Nicholas

It has been about six months since I first wrote about starting LDN, after a really bad attack. When I say “bad”, I mean that I was lying on the floor in my room, drooling on the floor. I had just woken up, and I tried to get out of bed, and I fell. I had some oral steroids, but nothing really helped me from that state. The steroids got me off the floor to a bed, but there I stayed until I started LDN. I could not breath normally, could not swallow normally, and would choke when I ate. Neither could I speak normally, or walk, or lift anything, etc. It was really bad, and I thought during this time that “this is it”; I thought that is where I was going to stay. I would have stayed there, if I had listened to the dozen mainstream doctors that just fill your body up with toxic drugs that don’t make you feel better. Those drugs have a small chance of stopping future attacks, but do not improve your wellbeing.
LDN is like nothing I have ever taken since being diagnosed. Besides reversing the swallowing, breathing, speaking, and weakness, I started to stand, then walk…and now I am just building up the strength in my legs so that I can stand and walk longer. Traditional medicine is a thing of the past for me. This is the new way. To be honest, it isn’t even the new way; LDN has been around since 1984. I am now looking to put the nightmare of MS behind me, and get back in shape from being so beaten down from this. LDN has made me feel better. No MS drug has ever done that for me.
I think anyone with MS owes it to themselves to at least learn about LDN. Go to www.lowdosenaltrexone, this is the USA website. Dr Bihari invented the use of LDN for MS. A lot of doctors will not embrace LDN, it’s not the mainstream. It’s your body and your health, and if you’re sick of being “sick”, then LDN is for you.
Since Jan. 1st, I went from the floor, to the bed, to a wheelchair, to a walker, to a cane, and now, I’m pretty close to walking by myself. More recently, this May saw the MS Foundation’s “Cruise for a Cause”. It was an MS benefit at sea, aboard the ‘Royal Caribbean’. I was a guest speaker, as well as the actress, Teri Garr. It left from Florida, and sailed to Mexico and Belize.
As the date of the cruise came closer, I became worried whether I would be able to do it, considering I had been so ill during the previous months. I boarded on the 8th May. There was a great demand for energy, but I just paced myself and I got through it. There were people from all over the US dealing with MS. It’s too easy to think you’re the only one dealing with it, and how it affects your life, so it was nice to meet other people and hear their stories. If it wasn’t for LDN I would have never survived. I just worked and rested, and by the next day I was refreshed. There were times when I got myself real tired, but all I needed was a good night’s rest to recover. I wish I had started LDN five years ago.
www.paulnicholasonline.com

Great news!!
Paul Nicholas's song "Please Remember Me" is on American Idol's internet radio station. We need your help!
Go to
Links and vote for Paul's song!
The American Idol website works just like the show!! So the more Paul is voted for, the better!!!
This is a great way for you to help Paul raise awareness for MS.
Thank you for the year of support!


~Tony's Two Years~

Hi Everyone,

I decided to post this after 2 years of just listening and learning
from everyone on this site, just to help those still deciding on LDN.

I originally experienced symptoms in 2003, after my first MRI on
6/2003 doctors were not sure what was going on. I had partial
paryalsis on my left side, lost the hearing in one ear and double
vision.

While the weakness subsided, hearing returned and my facial
paralasis cleared, I never felt normal, there was continuing brain
fog. After a lot of research, I figured I had MS. A new series of
symptoms resurfaced and another MRI 6/2004 a diagnosis was given of
MS.

I was on LDN by August of 2004. Almost immediately the brain fog
lifted. However, there was literally an awakening of every symptom
I had ever experienced which lasted about 6 months, even though much
milder.

Timeline

July 2004 Blood Type Diet and Supplements
August 2004 Started LDN (brain Fog lifted immediately)
October 2004 Started Copoxane daily
January 2005 All Symptoms diasppeared
March 2006 Reduced Copoxane to every other day
June 2006 Added Colloadial Silver from a quality company 20ppm
((Expensive) The next 5 weeks had a reawakening of symptoms even
though very mild)
September 2006 MRI
PALO ALTO MEDICAL FOUNDATION
HEALTH CARE DIVISION/PALO ALTO MEDICAL CLINIC
795 El Camino Real
Palo Alto, CA 94301

IMAGING REPORT

Patient Name: XXXXXX,XXXX
MRN: XXXXXXXXXX

DOB: XX/XX/XXXX Telephone #:XXXXXXXXXX

Referring MD:


Exam Date: 09/07/2006
Examination: BRAIN MRI WITH AND WITHOUT GADOLINIUM
Indication: History of multiple sclerosis, on therapy
for
2 years. Symptoms have improved.
Comparison: Comparison with outside hospital MRI dated
06/09/2004 from Fremont Sports Imaging.
Technique: 5 mm sagittal T1, 5 mm FLAIR coronal, 5
mm
axial proton density, 5 mm axial T2. Additional axial T1 pre and
post-gadolinium, coronal T1 post-gadolinium, sagittal T2
sequences through the brain.
Report: In comparison with 06/09/2004, there is no
significant change in number or size of the multiple,
periventricular and subcortical white matter T2 hyperintense
lesions, some of which are oriented perpendicular to the corpus
callosum. A few of these lesions appear to involve the corpus
callosum. There are also small T2 hyperintense lesions within
the right thalamus and possibly left basal ganglia, also
unchanged. Previously seen enhancement has resolved, involving
the lesions adjacent to the lateral ventricles. There are no
new
lesions.

The ventricles and sulci are within normal limits for age. The
major intracranial flow voids are unremarkable. There are no
extraaxial fluid collections, midline shift. Visualized orbits,
optic nerves, paranasal sinuses, mastoid air cells and posterior
fossa are unremarkable.

IMPRESSION:
In comparison with 06/09/2004, the previously seen enhancing
lesions adjacent to the lateral ventricles have resolved,
otherwise there is no significant change with persistent T2
hyperintense lesions in the periventricular and subcortical
white
matter, right thalamus, and possibly left basal ganglia. Some of
these lesions involve the corpus callosum. These findings are
nonspecific, but consistent with the reported history of
multiple sclerosis.


Anyway, I hope this information helps those that are still deciding.

~One Womens Relief~

Lake of the Pines woman finds pain relief from MS with experimental drug
There is no published data from clinical trials

Lake of the Pines resident Vicki Finlayson has MS and has found one little pill that brings her relief: Low Dose Naltrexone. Photo by BEN FURTADO/Auburn Journal

Vicki Finlayson has recently started approaching strangers in wheelchairs at Chinese restaurants, grocery stores, or anywhere else to ask them if they have multiple sclerosis - a terrifying neurological disease that can affect one's ability to walk.

Sometimes they do, so Finlayson, 50, shares a bit of wisdom on what's helped her cope with MS: Low Dose Naltrexone.

The Lake of the Pines woman also totes around her "LDN bag" - heavy with packets of information on the drug she can hand out to any curious soul.

Low Dose Naltrexone is not widely prescribed for the treatment of MS. Many doctors will not prescribe it because no published data exists from clinical trials on LDN in MS.

But for five months, Finlayson has found relief from her multiple sclerosis symptoms with LDN after a journey that took her to the depths of pain and suffering.

ADVERTISEMENT

An avid country western dancer, Finlayson was just taking up golf when she first felt vague pain and numbness in her limbs 10 years ago.

The symptoms progressed and Finlayson was diagnosed with progressive relapsing MS in 1998. Her body was covered in bruises from bumping into walls. She had whole body spasms that would come on in an instant. It hurt to wear her Levis because of her sensitivity.

When she was diagnosed, she was presented with one group of drugs to cope with the symptoms, the so-called CRAB drugs (Copaxin, Rebiff, Avonex and Betaseron).

But the side-effects made her sick and miserable.

She spent so much time in pain and crying on her green-striped couch that she vowed to trash it once she got better.

"I would be eating dinner and put down my fork and go to the couch and cry because I couldn't get any relief," said Finlayson, a stay-at-home mother of one daughter, now 26.

Her drugs, some costing her $400 a month, couldn't control the pain, so she was using Morphine patches, steroid infusions, eight 10mg Vicodin pills a day and oxycontin - a drug given to cancer patients when they're dying.

"I was an active person but I was in so much pain. I couldn't use my left hand. Once you get to that point, you'll try anything," she said of her treatments. "I got to the point where if I went to bed and never woke up, I had made peace with that."

After her husband Steven did extensive research on Internet, he found Dr. Bernard Bihari, who agreed to write her a prescription for Low Dose Naltrexone.

She started taking one LDN pill at bed each night. Three days letter, she felt better. There's still pain, but no more spasms.

There's been no clinical trial to study LDN in MS. At higher doses, it is FDA-approved to treat alcohol and drug dependency.

"Further study is needed to determine the safety and efficacy of LDN as a treatment for people with MS," according to a statement from the National Multiple Sclerosis Society.

If money could be raised to conduct research, maybe more doctors will see its benefits, Finlayson said. She is organizing a fund-raiser this fall to do just that.

But for now, she's spreading the word herself on what LDN has done for her life.

"I encourage people to do their homework and read about it because it's something I feel could work," Finlayson said. "It doesn't help everybody and it's not like you'll be able to walk the next day, but it's something a lot of people have found relief with."

The Journal's
Michelle Miller can be reached at michellem@goldcountrymedia.com.


~Scott's Story~

My 24-month update was due on the 23rd of June; however, I will also include pre-LDN and how LDN has helped me to this point. 
 
After a second opinion, I was diagnosed with Relapsing-Remitting MS in October 2001.  I was not affected by MS symptoms, at that time, except for a slight slur in my speech that came and went periodically.  After diagnosis, I started Avonex in January of 2002.  While I was on Avonex for two years, I was fairly symptom free except for the day after my shot in which I was wiped out and in bed.  After being on Avonex for two years, my health began to deteriorate significantly causing me to loose my job in January of 2004.  I stopped driving and was wheelchair bound in February of that same year.  Some of my symptoms included:  deteriorating vision which caused me to be declared legally blind, chronic fatigue, poor balance, bladder urgency and frequency, severe muscle spasms and foggy brain.  Because of the serious decline in my health and functioning, my doctor took me off Avonex and put me on Rebif which I started in April 2004.  At this same time, my doctor left the practice and I was transferred to a new doctor. 
 
In April 2004, I began to search the internet because I wanted to find what others were doing for MS symptoms with success.  The first information I found involved individuals with MS who used bee stings as treatment in Florida.  Not only was the treatment too far, but their success rate was questionable.  Next, I found information on a drug called Low Dose Naltrexone (LDN).  When I asked my new doctor about it, her only word was “no”.    I had read enough information to cause me to find a doctor who would say, “Yes”.  In early June of 2004, I found a doctor who did a phone consultation and prescribed LDN.   
 
On June 23, 2004, I took my very first dose of LDN and was out of my wheelchair three days later.  While gaining strength in my legs because of being confined to the wheelchair for 5 months, I used the walls for balance to get from one room to the next.  I could not support myself very long so I could not stand in the kitchen and cook meals.  I ate a lot of frozen meals cooked in the microwave during my symptom improvement.  As time passed, my energy level boosted and I genuinely felt well for the first time in two years.  Also, my walking gradually improved to the point where I only needed a cane outside.  Most of my other symptoms improved within months except for my eyesight and bladder urgency. 
 
During 2005, I started water aerobics to continue my strength building.  Additionally, at home I was using the Total Trainer and an exercise bike three times a week.  I also noticed that my eyesight was improving.  I went to an eye specialist in December who examined me and found that I was no longer “legally blind”, and was cleared to drive during daylight hours. 
 
Since December of 2005, I have started physical therapy two times a week as a support to my other treatment.  I believe all of my improvements are directly a result of using LDN religiously.  I will continue to use it until someone finds a cure for MS.
 
Scott

~Nancy's Brother~

hi donna heres a short testimony brothers got ms hes not walking at
all has not walked in 5 yrs
hes been on ldn for 2 months still not walking but he is getting back his
feeling and some movement no tingling,no numbness,no pain. he is getting
actual feeling and movement,spasms alot less almost none. when we get
muscle built back in his legs we will try to stand him.we feel this ldn 3mg 
is very helpful for his recovery.he has alot of other problems that we are
working on right now but will go to the next level of ldn in 4 months.He is
more alert in mornings we believe this is from the ldn also. nancy millar
sister and caregiver to brother mark mark is 54 has been dxed since
1992. it came on somewhat suddenly and is unlike most ms ers he is chronic
progressive

~Reg, From Rimbey Alberta~

Hi I am from central Alberta, Canada and was just entering the latest
phase
of this unlovely disease which caused me to retire early as the

neuropathic pain in my arm coupled with the very frequent trips to the
washroom,made my job as a mechanic almost impossible.

Add to that light sensitivity and extreme fatigue(all of which are very
common for those of us with M.S,)and you have a recipe for

retirement.

I loved my job and thought the world of my business and coworkers but
even
though there were many concessions made to assist me with

the daily tasks, I couldn't concentrate clearly to function properly at
work


Upon retiring four years ago I bought a computer and started to
research
this disease in an effort to understand it better as I wasn't getting

much help from the medical profession.

One of the first things I learned was that there is no cure and
although it
is not life threatening it will be a constant companion until death!

Depressing to say the least, but I persevered until one day I found out
about a new use for an old drug that had wonderful anecdotal

reports,but no trials.

Following the recommendations outlined in the lowdosenaltrexone.org
web-site
I convinced my family Dr. to give me a trial three month

prescription with 1.5 mg pills so that I could adjust the amount easily
until I found out what my body required.

So I started out with 2 capsules and used that for a week during which
I
promptly lost the burning neuropathic pain,and light sensitivity,

plus as a bonus I regained complete control of my bladder,not as good
as
when I was a teen but for a fifty year old it is by far acceptable 

to pre LDN levels .I can even sit through a three hour movie,drinking
coke
and not get up once.

I did try 3 capsules but this is a self regulating drug,as in once you
reach
your optimum level side effects start to step in,I was getting very

stiff on 4.5mgs (which is the utmost anyone should take)and my bladder
control was suffering,so back to 3.0 mgs, once a night at 9;30

There have been really no side effects worth speaking about, many say
the
sleep disturbance at two or three in the morning is

annoying,but that is all it is as I find that with the LDN my energy
level
is increased so much so that an interruption at 2;00 is really

nothing to be concerned about.,

This is a really safe drug taken at these amounts, and I wish I had
found
out about it sooner , who knows maybe I would still be at work?

It also has helped me quit smoking as the urge to light up has not
returned
at all. Could that be from the LDN or is it just will power?

You be the judge, I have never gone six years before but this Jan 6
will
make it seven years without a cigarette in my hands,

I am still in a wheelchair but at least I am not without hope,

Reg Kreil

Rimbey Alberta   

~Tom's LDN Story~

 I have been diagnosed with MS since May of 1984.  I have never taken any of the MS drugs due to the experimental nature of them and the adverse side effects.  However, in January of 2003 I learned of Low Dose Naltrexone.  For the next six months I researched it as best I could and found that there were many MS patient's using it and it had no adverse side effects other than a week or two of mild sleep disturbance.
July 8, 2003 I started to take 4.5 mg. a night of LDN.  The next day I experienced increased feelings and sensation in my ankles and legs.  There was also significant improvement with urinary urgency and frequency.  Since that time there has been no further improvement or progression. 
As far as I am concerned this is the only definite regarding MS other than nutrition that I trust.
Regards,
Tom Bayuk                  Look at Tom's Site~www.copingandprevailing.com 
 

~Pete's Excited!~

I've been on 3mg of LDN for 12 days now. I found an LDN friendly
doc, through this site, who does (and did in my case) phone
consults. I got my prescription filled through Skip's, so I know it
was compounded properly. The main thing I am after, of course, is to
halt progression of my MS. I have only recently been diagnosed with
MS, a little over 2 months ago. It was very hard to diagnose. The
MRIs, even with contrast, were not definitive. It's only on the
cervical that any demyelimation shows up and with no intensification
with the contrast. My brain scan shows some white specs, but more
the type that's consistent with the aging process, as I am 59. It
wasn't till I got the LP that a diagnosis of MS was given. I'm one
of the lucky one's; the only symptoms I have is drop foot (Right
foot), spasticity in the legs, mainly right leg a little in the left,
but not enough to cause any impairment and paresthesia (pins and
needles) in both feet. I do have some difficulty with gait, due to
my right leg, and have a pronounced limp, but that's it. I'm not
bothered my the heat or getting overheated; I don't have the "Hugs";
no problems with my eyesight, no cognitive impairment, nothing else
at all just my right leg and that's it. This is why it was so
important to me to halt progression; if I could just stop its
progression I could live out my life just fine. May be my skiing and
dancing days were over, but I wouldn't be limited by anything else.
However, I am happy to report that the paresthesia in my right foot
is gone totally and it's been reduced in my left foot by 80 or 90
percent. Also my gait has improved. I can lift my foot in and out
the car much easier than I could and climbing stairs has gotten
easier. Hopefully I will continue to improve.

I had an appointment with my neuro this past Monday. I asked him if
her were familiar with LDN. He smiled and said he was. When I asked
him why he was smiling he told me that he had been at a conference
recently and had just asked a couple of the leading MS neuros in our
area (Philadelphia) their opinion about LDN. One of them being Dr.
Leist, who is the director of the MS clinic at the Thomas Jefferson
University Hospital. They did not dismiss LDN out of hand. Although
they weren't prescribing it, they are taking a wait and see attitude,
with all the turn arounds that have occurred lately. My own neuro
has an even more open attitude. He told me a story that helps
explain his open attitude. When he was in Med School there was a
doctor, just a GP, in Australia who came up with the theory that
Peptic Ulcers were not cause by over acidity, as what was the
conventional wisdom of the day, but by bacteria from evidence
gathered during autopsies that he had preformed. He was dismissed
out of hand; after all, the experts in the field said he was wrong
and who was he as a mere GP to refute their beliefs. 10 years later
he was proven to be 100% correct. Doctors now know that it is caused
by the corkscrew-shaped bacterium Helicobacter pylori (H. pylori).
He said this was a very valuable lesson learned early in his medical
career; never discount anything just because it may go against
current conventional wisdom. Today's wild theory may be tomorrow's
conventional wisdom. I asked him if he'd be willing to write a
prescription for me. He said he might, but wants to do a little more
research first. The next day I dropped off the following documents
at his office:

1. An email that references the grant that the National Multiple
Sclerosis Society (NMSS) funded to Dr. Ian Zagon to research LDN.
2. The webpage from the NMSS site that shows the reversal of
opinion where they now encourage clinical trials be conducted on LDN.
3. The Article written by Y.P. Agrawal, MD, PhD, (Med
Hypotheses. 2005;64(4):721- 4), where Dr. Agrawal proposes that LDN
reduces disease activity in MS by reducing the destruction of
oligodendrocytes, the cells that manufacture myelin.
4. Frequently Asked Questions about LDN that I found on the net.
5. Survey of 267 Patients Using Low Dose Naltrexone for Multiple
Sclerosis.

Once he's digested these documents. I'll give him a call.

Also today I had an appointment with my Primary care physician for my
routine check up. During the exam he asked me how I was doing and I
told him I was improving and asked him if he was familiar with
Naltrexone. He said he was, primarily as it relates to substance
abuse, but was aware that it was being used off label and why. I
told him I was taking it and started by spiel. He was very
interested. This time I had copies of what I had given my neuro with
me and he seemed extremely interested in reviewing them. I asked him
the magic question, "Would he be willing to write a prescription for
LDN for me" and he said he didn't see why not. I know I could have
pushed him and gotten it right there and then but thought best of
it. I'll let him read and digest the documents I left with him and
then call him in about a month. I figured by that time he'll become
even more comfortable with prescribing it having review the documents
I furnished him. It will give us one more LDN friendly doctor in our
corner (In Bucks County, PA). By the way he's a D.O. not an M.D.
D.O.'s seem to be more receptive to alternate treatments.

I sorry I've rattled on, but I'm just so excited I couldn't contain
myself.

Pete

skinut@enter.net                                                                                                    8/31/06

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