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

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.
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.
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
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