Re: MS, spasm and 4.5mg ldn

[Guest guest]

I have SPMS with considerable spasticity. I started with 3 mg LDN

about two months ago. I experienced a reduction of spasticity after

just a few days. However, the spastic relief only seemed to last for

a few hours in the morning and then returned by mid day. My morning

spasticity (feeling of legs being 'locked up'/difficult to move or

bend) was always less than later in the day. I *believe* I saw some

improvement from the 3mg LDN, but it's hard to say if it was placebo

effect, random variation of the MS, or a genuine effect of the drug.

A week ago I upped the dosage to 4.5mg to see if that made any

difference. The first two days I experienced a remarkable rollback in

spasticity that lasted well into the evenings. However, beginning the

third day, I am worse -- in fact considerably worse than before I was

taking LDN at all.

It's all very frustrating. I don't have 'exacerbations' any more in

the way that folks with the relapsing/remitting form do. However, I

have considerable mobility variance from day to day and sometimes from

hour to hour. Therefore it's difficult to prove cause and effect.

I plan to keep going with the 4.5mg for at least a month. I don't

perceive that is is doing me any permanent harm (but who knows?!) and

I know there are anecdotes in this forum of folks who got worse before

they got better as the immune system re-balances itself.

As for your basic question of 3.0 vs 4.5 mg, there seems to be no

clear cut answer. The main site suggests 3.0 if you have 'spasms' and

4.5 if you don't. However, other posts in here suggest 4.5 is OK even

if you have spasms.

There could be some confusion about the terms 'spasms' and

'spasticity'. I consider 'spasms' to be an involuntary flexing of a

muscle that is sharp and momentary. By contrast, spasticity is

increased muscle tone that results from very fast and very small

flexing and unflexing of the muscles. To me they are very different

terms, but I don't know if the medical community views them the same

or different. I don't know if the LDN recommendation about 'spasms'

applies to both spasms and spasticity or not.

>

> Hi Everyone

> I have MS with spasms and am wondering about increasing my LDN dose to

> 4.5mg. My spasms occure in late evening and during the night with no

> spasms evident during the day. The LDN homepage recommends staying at

> 3mg since there's anecdotal evidence that increasing to 4.5mg could

> also increase the spasms. However 3mg is not as effective in symptom

> relief as it was a month ago when I increased the dose from 1.5mg to

> 3mg. I've ruled out Lymes and candida overgrowth as a cause of the

> weakening effect. I was wondering if anyone has had experience with

> using 4.5mg even though they have MS spasms. Thanks for your help.

>

[Guest guest]

I too enjoyed a reduction of spasticity when I first started LDN.

However, after awhile the spasticity started up again but not to the

same degree that I had prior to LDN. There are so many other benefits

from LDN that I'm content to endure the spasticity. I do take

gabapentin to help with it.

I did experience greater spasticity when I tried to up the dose to

4.5, so I'll stay at 3.0. For most of us with MS, less is more (3.0mg)

> >

> > Hi Everyone

> > I have MS with spasms and am wondering about increasing my LDN

dose to

> > 4.5mg. My spasms occure in late evening and during the night with

no

> > spasms evident during the day. The LDN homepage recommends

staying at

> > 3mg since there's anecdotal evidence that increasing to 4.5mg

could

> > also increase the spasms. However 3mg is not as effective in

symptom

> > relief as it was a month ago when I increased the dose from 1.5mg

to

> > 3mg. I've ruled out Lymes and candida overgrowth as a cause of

the

> > weakening effect. I was wondering if anyone has had experience

with

> > using 4.5mg even though they have MS spasms. Thanks for your help.

> >

>

[Guest guest]

Yes, I experiment with 4.5 mg from time to time but, it does cause

more spasms and makes me very tired the next day. I may try doing it

just one night a week to see if it is worth it or not.

>

> Hi Everyone

> I have MS with spasms and am wondering about increasing my LDN dose

to

> 4.5mg. My spasms occure in late evening and during the night with no

> spasms evident during the day. The LDN homepage recommends staying

at

> 3mg since there's anecdotal evidence that increasing to 4.5mg could

> also increase the spasms. However 3mg is not as effective in symptom

> relief as it was a month ago when I increased the dose from 1.5mg to

> 3mg. I've ruled out Lymes and candida overgrowth as a cause of the

> weakening effect. I was wondering if anyone has had experience with

> using 4.5mg even though they have MS spasms. Thanks for your help.

>

[Guest guest]

hi,

i had spams so bad for years, i increased my LDN but it did not help me.

my doctor suggested i try 4 AP (amino pryridine/) i think that is how you spell it. IT WORKED...................i have not had a spasm since i started it.. !!!!!!!!!!!!!

i take 10mgs 3 times day..i tried baclofen, zanaflex and many other meds....nothing ever worked.i am sooooooooooooooooooo happy there are gone~!!!!

keep e posted,

colleenNov 20, 2008 10:24:54 PM, low dose naltrexone wrote:

Hi EveryoneI have MS with spasms and am wondering about increasing my LDN dose to 4.5mg. My spasms occure in late evening and during the night with no spasms evident during the day. The LDN homepage recommends staying at 3mg since there's anecdotal evidence that increasing to 4.5mg could also increase the spasms. However 3mg is not as effective in symptom relief as it was a month ago when I increased the dose from 1.5mg to 3mg. I've ruled out Lymes and candida overgrowth as a cause of the weakening effect. I was wondering if anyone has had experience with using 4.5mg even though they have MS spasms. Thanks for your help.

[Guest guest]

Colleen,

Is 4 ap also a compounded medication? I thought I had seen some clinical trials for it, but not sure.

I have very bad spams and not a thing will work for me. LDN had made it a little better, still working on just the right amount.

Thanks,

Elena

From: Colleen <colleen521@...>low dose naltrexone Sent: Friday, November 21, 2008 6:31:38 PMSubject: Re: [low dose naltrexone] MS, spasm and 4.5mg ldn

hi,

i had spams so bad for years, i increased my LDN but it did not help me.

my doctor suggested i try 4 AP (amino pryridine/) i think that is how you spell it. IT WORKED...... ......... ....i have not had a spasm since i started it.. !!!!!!! !!!!!!

i take 10mgs 3 times day..i tried baclofen, zanaflex and many other meds....nothing ever worked.i am soooooooooooooooooo o happy there are gone~!!!!

keep e posted,

colleenNov 20, 2008 10:24:54 PM, low dose naltrexone wrote:

Hi EveryoneI have MS with spasms and am wondering about increasing my LDN dose to 4.5mg. My spasms occure in late evening and during the night with no spasms evident during the day. The LDN homepage recommends staying at 3mg since there's anecdotal evidence that increasing to 4.5mg could also increase the spasms. However 3mg is not as effective in symptom relief as it was a month ago when I increased the dose from 1.5mg to 3mg. I've ruled out Lymes and candida overgrowth as a cause of the weakening effect. I was wondering if anyone has had experience with using 4.5mg even though they have MS spasms. Thanks for your help.

[Guest guest]

it was the ONLY med that worked for me.. my spasm were really bad.

4 AP's chemical make-up is the same as fampridine. a study recently done for walking better/longer for those w/MS.

Nov 21, 2008 10:34:49 PM, low dose naltrexone wrote:

Colleen,

Is 4 ap also a compounded medication? I thought I had seen some clinical trials for it, but not sure.

I have very bad spams and not a thing will work for me. LDN had made it a little better, still working on just the right amount.

Thanks,

Elena

From: Colleen net>low dose naltrexone Sent: Friday, November 21, 2008 6:31:38 PMSubject: Re: [low dose naltrexone] MS, spasm and 4.5mg ldn

hi,

i had spams so bad for years, i increased my LDN but it did not help me.

my doctor suggested i try 4 AP (amino pryridine/) i think that is how you spell it. IT WORKED...... ......... ....i have not had a spasm since i started it.. !!!!!!! !!!!!!

i take 10mgs 3 times day..i tried baclofen, zanaflex and many other meds....nothing ever worked.i am soooooooooooooooooo o happy there are gone~!!!!

keep e posted,

colleenNov 20, 2008 10:24:54 PM, low dose naltrexone wrote:

Hi EveryoneI have MS with spasms and am wondering about increasing my LDN dose to 4.5mg. My spasms occure in late evening and during the night with no spasms evident during the day. The LDN homepage recommends staying at 3mg since there's anecdotal evidence that increasing to 4.5mg could also increase the spasms. However 3mg is not as effective in symptom relief as it was a month ago when I increased the dose from 1.5mg to 3mg. I've ruled out Lymes and candida overgrowth as a cause of the weakening effect. I was wondering if anyone has had experience with using 4.5mg even though they have MS spasms. Thanks for your help.

[Guest guest]

I could not completely read your message. Are you saying that you used an amino acid and got relief? Please email me back? diannewhitehurst@... How old are you" What is your medical problem? Dianne Austin

From: Colleen <colleen521@...>low dose naltrexone Sent: Friday, November 21, 2008 10:51:08 PMSubject: Re: Re: [low dose naltrexone] MS, spasm and 4.5mg ldn

it was the ONLY med that worked for me.. my spasm were really bad.

4 AP's chemical make-up is the same as fampridine. a study recently done for walking better/longer for those w/MS.

Nov 21, 2008 10:34:49 PM, low dose naltrexone wrote:

Colleen,

Is 4 ap also a compounded medication? I thought I had seen some clinical trials for it, but not sure.

I have very bad spams and not a thing will work for me. LDN had made it a little better, still working on just the right amount.

Thanks,

Elena

From: Colleen net>low dose naltrexoneSent: Friday, November 21, 2008 6:31:38 PMSubject: Re: [low dose naltrexone] MS, spasm and 4.5mg ldn

hi,

i had spams so bad for years, i increased my LDN but it did not help me.

my doctor suggested i try 4 AP (amino pryridine/) i think that is how you spell it. IT WORKED...... ......... ....i have not had a spasm since i started it.. !!!!!!! !!!!!!

i take 10mgs 3 times day..i tried baclofen, zanaflex and many other meds....nothing ever worked.i am soooooooooooooooooo o happy there are gone~!!!!

keep e posted,

colleenNov 20, 2008 10:24:54 PM, low dose naltrexone wrote:

Hi EveryoneI have MS with spasms and am wondering about increasing my LDN dose to 4.5mg. My spasms occure in late evening and during the night with no spasms evident during the day. The LDN homepage recommends staying at 3mg since there's anecdotal evidence that increasing to 4.5mg could also increase the spasms. However 3mg is not as effective in symptom relief as it was a month ago when I increased the dose from 1.5mg to 3mg. I've ruled out Lymes and candida overgrowth as a cause of the weakening effect. I was wondering if anyone has had experience with using 4.5mg even though they have MS spasms. Thanks for your help.

[Guest guest]

Dianne:

Colleen will have to answer your other questions, but 4AP (4 amino-

pyridine) is a prescription-only DRUG for people with spinal injuries

or multiple sclerosis. It doesn't work for everyone, and can be

dangerous for some. Here's a site to help explain more:

http://www.mult-sclerosis.org/news/May2000/4APFAQ.html

Here's a brief quote from the site:

" How Does 4-AP Work? First, it improves conduction in de-myelinated

and dysmyelinated (abnormally myelinated) axons. It does so by

blocking the fast voltage-sensitive potassium channels in cells,

including neurons, muscle and other excitable tissues. "

Hope this helps explain.

Tarra

>

> Hi Everyone

> I have MS with spasms and am wondering about increasing my LDN dose

to

> 4.5mg. My spasms occure in late evening and during the night with

no

> spasms evident during the day. The LDN homepage recommends staying

at

> 3mg since there's anecdotal evidence that increasing to 4.5mg could

> also increase the spasms. However 3mg is not as effective in

symptom

> relief as it was a month ago when I increased the dose from 1.5mg

to

> 3mg. I've ruled out Lymes and candida overgrowth as a cause of the

> weakening effect. I was wondering if anyone has had experience with

> using 4.5mg even though they have MS spasms. Thanks for your help.

>

[Guest guest]

Hi Colleen,

I feel so glad for your relief. I am interested to know more about your

story, I am sure other people are interested too. Please tell us

How long have you been on 4-AP? Are you taking this at the same time

of taking LDN or not? If yes what's your LDN dosage now; if not how

soon you started 4-AP after you stopped LDN. Any other more

information may be useful to everyone.

Thanks and best wishes,

Cheng

[Guest guest]

For painful paroxysmal tonic spasms (common in MS) ask your doctor for a prescription for Trileptal. It is much safer and it worked for me and then the spasms went away. I took one 150 mg pill in the morning and one at night for about a year. Trileptal is a medication also used for epilepsy and is not dangerous like 4AP.

Good luck; I hope it works for you--

Joyce

One site has it all. Your email accounts, your social networks, and the things you love. Try the new AOL.com today!

[Guest guest]

>

Hi Everyone

Thanks for all your replies to my questions. I have decided to up the

LDN to 4.5mg and see what happens (nothing to loose really!). I've

been on 4AP for about 6 years (10mg twice daily although I go up to

10mg. 3 times a day as needed) and have also had very good success with

reduction in spasms. It is an easy drug to start and stop as you

choose. I usually take 10 mg in the morning and another 10mg in the

evening. I haven't noticed any contra-indication with LDN. As far as

I know 4AP was initially suggested for fatigue and heat intolerance in

MS. I don't have either of those as symptoms of MS but I know others

that it has helped for these symptoms. There has been at least one

clinical trail on 4AP and MS. Still its been a helpful drug and is the

only MS drug I've ever taken. It is a compounded drug like LDN and is

usually prescribed by a neurologist. I'll let you know how the

increased LDN dosage goes. /dyan

[Guest guest]

Colleen,

Glad 4AP is working for you. I've been on the 4AP clinical trial for

about a year now and it has done nothing for me (good or bad). Just

so everyone knows.. 4AP = fampridine, but in a slow release

formulation. Fampridine itself is dirt cheap and can be purchase from

a compounding pharmacy. However, 4AP is a patented formula not yet

approved by the FDA. You can only get 4AP via a clinical study as far

as I know. And I believe the clinical studies are closed to new

entrants at the moment.

Its worth noting that fampridine is actually an insecticide. The

reason it's so cheap is that it is still used in bulk as an

insecticide. 4AP is a low dose of fampridine (so it doesn't kill you)

and has the special patented slow release mechanism. A compounding

pharmacy might say that they can make a slow release formulation of

fampridine, but it's not as effective as 4AP -- at least according to

the big pharma folks who are paying for the 4AP clinical studies.

The primary success measure of the 4AP study is a timed 25 foot walk.

My times have not improved after a year of 4AP, but I guess a lot of

people have shown improvement. The pharma company is hoping that the

FDA will fast track approval of 4AP in the next few months even.

I posted earlier about going from LDN 3.0 to 4.5. I said that for the

first two days I felt noticeable reduction in spasticity (I'm sure my

25 foot walk times would have been 50% better -- had I actually taken

the test). However, from day 3 until now (day 8), my spasticity has

gotten worse every day. I'm to the point that I can hardly lift one

of my feet off the floor at all. So as of today I'm going to fall

back to 3.0. I may try sprinkling in an occasional 4.5 dose as

another poster suggested to see what happens. Honestly, the first two

days of 4.5 were so encouraging that there just has to be a way to get

that improvement back.

I'll let everyone know how it goes.

Wayne

[Guest guest]

I take 4-AP and get it through Skip's Pharmacy via a prescription

from my neurologist.

4-AP is not an insecticide, it is a bird poison.

http://www.mult-sclerosis.org/4aminopyridine.html

Art

--

>

> Colleen,

>

> Glad 4AP is working for you. I've been on the 4AP clinical trial

for

> about a year now and it has done nothing for me (good or bad). Just

> so everyone knows.. 4AP = fampridine, but in a slow release

> formulation. Fampridine itself is dirt cheap and can be purchase

from

> a compounding pharmacy. However, 4AP is a patented formula not yet

> approved by the FDA. You can only get 4AP via a clinical study as

far

> as I know. And I believe the clinical studies are closed to new

> entrants at the moment.

>

> Its worth noting that fampridine is actually an insecticide. The

> reason it's so cheap is that it is still used in bulk as an

> insecticide. 4AP is a low dose of fampridine (so it doesn't kill

you)

> and has the special patented slow release mechanism. A compounding

> pharmacy might say that they can make a slow release formulation of

> fampridine, but it's not as effective as 4AP -- at least according

to

> the big pharma folks who are paying for the 4AP clinical studies.

>

> The primary success measure of the 4AP study is a timed 25 foot

walk.

> My times have not improved after a year of 4AP, but I guess a lot

of

> people have shown improvement. The pharma company is hoping that

the

> FDA will fast track approval of 4AP in the next few months even.

>

> I posted earlier about going from LDN 3.0 to 4.5. I said that for

the

> first two days I felt noticeable reduction in spasticity (I'm sure

my

> 25 foot walk times would have been 50% better -- had I actually

taken

> the test). However, from day 3 until now (day 8), my spasticity has

> gotten worse every day. I'm to the point that I can hardly lift one

> of my feet off the floor at all. So as of today I'm going to fall

> back to 3.0. I may try sprinkling in an occasional 4.5 dose as

> another poster suggested to see what happens. Honestly, the first

two

> days of 4.5 were so encouraging that there just has to be a way to

get

> that improvement back.

>

> I'll let everyone know how it goes.

>

> Wayne

>

[Guest guest]

I was considering 4AP because I am also having difficulty lifting my

leg off the ground. What is Trileptal ? Anyone know the difference

between 4AP and Trileptal? Bird Poison / Insecticide - yikes !

Am I entertaining a dance with the devil?

>

> For painful paroxysmal tonic spasms (common in MS) ask your doctor

for a

> prescription for Trileptal. It is much safer and it worked for me

and then the

> spasms went away. I took one 150 mg pill in the morning and one at

night for

> about a year. Trileptal is a medication also used for epilepsy and

is not

> dangerous like 4AP.

>

> Good luck; I hope it works for you--

> Joyce

>

>

> **************One site has it all. Your email accounts, your social

networks,

> and the things you love. Try the new AOL.com

>

today!(http://pr.atwola.com/promoclk/100000075x1212962939x1200825291/aol?redir=h\

ttp://www.aol.com/?optin=new-dp

> %26icid=aolcom40vanity%26ncid=emlcntaolcom00000001)

>

[Guest guest]

,

Have you tried vit B1, B6 and B complex. For some people it is helpful for walking and for balance. I will send you some saved chats on these.

Also, just to make sure you are getting full benefit of LDN, you might want to try taking the capsules and emptying them into your mouth and taking that down with water. It is just something to try, in order to make sure you are ingesting the LDN and as quick of a release as possible. It does not taste good, but still worth trying. If you week any differently it might take up to 6 weeks to see the difference.

My best

Aletha

[Guest guest]

Dyan,

Which compound Pharmacy do you use for the 4AP?

And what is the name of your Dr. who put you on it. I would love to try 4AP.

Thanks,

Elena

From: dyanlayzell <dgf108@...>low dose naltrexone Sent: Saturday, November 22, 2008 4:21:57 PMSubject: [low dose naltrexone] Re: MS, spasm and 4.5mg ldn

>Hi EveryoneThanks for all your replies to my questions. I have decided to up the LDN to 4.5mg and see what happens (nothing to loose really!). I've been on 4AP for about 6 years (10mg twice daily although I go up to 10mg. 3 times a day as needed) and have also had very good success with reduction in spasms. It is an easy drug to start and stop as you choose. I usually take 10 mg in the morning and another 10mg in the evening. I haven't noticed any contra-indication with LDN. As far as I know 4AP was initially suggested for fatigue and heat intolerance in MS. I don't have either of those as symptoms of MS but I know others that it has helped for these symptoms. There has been at least one clinical trail on 4AP and MS. Still its been a helpful drug and is the only MS drug I've ever taken. It is a compounded drug like LDN and is usually prescribed by a neurologist. I'll let you know how the

increased LDN dosage goes. /dyan