Re: Whats more important, the Dose or the Response??

[Guest guest]

You should contact Dr. Gluck about this. I have no idea.

I just wanted to say that your post has scared the hell out of me.

Dr. Bihari assured me that if I stayed on the LDN I could expect no

further progress and no relapses of my PRMS.

I guess that isn't true for us all. I hope I'm one of the " lucky "

ones, and you have my deepest sympathy for the misery and fear you

must be going through.

Warmest,

Joe

>

> Ive been on ldn for 12 months now

>

> for progressive MS (had for 6 years)

>

> Im only 24, and starting 3mg in January with inital great results -

> better strength , better balance, better bladder for the first 4-6

> weeks, however the last 10 months have been awful.

>

> Symptons became much worse than before starting ldn, weker legs, worse

> balance. the only thing that has remained is my bladder.

>

> Ive tried from 2mg - 6mg , and i have felt the best when on 2mg, my

> walking is best on this dose.

>

>

> I have read 3mg is the minimum to stop/slow down progression, so my

> question is what is more important, the dose, or the response?

>

> As on 2mg i feel best (mobility), i have also tried 6 weeks on 4.5mg,m

> but it just makes me less mobile.

>

> Is it best to go for 3 - 4.5mg , but my mobility/leg

> strength/balance/bladder suffers.... or shall i go back to 2mg and

> have sympton relief?

>

> I havent tried 1.5mg yet, but it would probably help more.

>

> Thank you for reading, and any knowledgable replies

>

[Guest guest]

What a coincidence, I was about to ask a similar type question. A

little introduction first, I have been lurking for about eight months,

I have MS, was diagnosed in 1997. My question regarded whether or not

I should lower my dosage from 3 mg's to 2 mg's. Currently I cannot

walk and have extreme spasticity. I have been taking LDN for six

months at 3 mg's. My spasticity has increased from the very beginning,

I was hoping that with time this side effect would subside, it hasn't.

I am still on the fence on what to do. Maybe I should start over at

1.5 mg's and increased dosage over several months or just back down my

dosage to 2 mg's. Your thoughts and comments would be greatly

appreciated, thank you, Ivan

[Guest guest]

I would love to hear ideas on this as well. Diagnosed w/ RRMS12 yrs

ago, was on Rebif and then Copaxone, and steadily progressed to

Secondary. Was told about LDN from a newly diagnosed friend who had

great results...started 4 months ago. When starting at 1.5mg,

everything was going well. Followed protocal, increased dose. At

4.5mg spascity came back, so have gone back down to 3mg, but am doing

worse. No Drs here know anything about this, so the LDN sites are my

only resource for getting information. My GP was willing to prescribe

this for me on trial basis, but script runs out in a month, so any

ideas or feedback would be appreciated.

Sorry about leaving original post, but wanted people to know what I

was asking.

>

> What a coincidence, I was about to ask a similar type question. A

> little introduction first, I have been lurking for about eight

months,

> I have MS, was diagnosed in 1997. My question regarded whether or

not

> I should lower my dosage from 3 mg's to 2 mg's. Currently I cannot

> walk and have extreme spasticity. I have been taking LDN for six

> months at 3 mg's. My spasticity has increased from the very

beginning,

> I was hoping that with time this side effect would subside, it

hasn't.

> I am still on the fence on what to do. Maybe I should start over

at

> 1.5 mg's and increased dosage over several months or just back down

my

> dosage to 2 mg's. Your thoughts and comments would be greatly

> appreciated, thank you, Ivan

>

[Guest guest]

Have you thought about making LDN? You can order from All Day Chemist, dont need a Dr note. The wedsit is www.alldaychemist.com I use them just that they are in India so it take some time. And I have prices other sites and allday has the best price.

Elena

From: tiltedwednesday <tiltedtombstone@...>low dose naltrexone Sent: Tuesday, December 23, 2008 6:17:41 PMSubject: [low dose naltrexone] Re: Whats more important, the Dose or the Response??

I would love to hear ideas on this as well. Diagnosed w/ RRMS12 yrs ago, was on Rebif and then Copaxone, and steadily progressed to Secondary. Was told about LDN from a newly diagnosed friend who had great results...started 4 months ago. When starting at 1.5mg, everything was going well. Followed protocal, increased dose. At 4.5mg spascity came back, so have gone back down to 3mg, but am doing worse. No Drs here know anything about this, so the LDN sites are my only resource for getting information. My GP was willing to prescribe this for me on trial basis, but script runs out in a month, so any ideas or feedback would be appreciated.Sorry about leaving original post, but wanted people to know what I was asking.>> What a coincidence, I was about to ask a similar type question. A > little introduction first, I have been lurking for about eight months, > I have MS, was diagnosed in 1997. My question regarded whether or not > I should lower my dosage from 3 mg's to 2 mg's. Currently I cannot > walk and have extreme spasticity. I have been taking LDN for six > months at 3 mg's. My spasticity has increased from the very beginning, > I was hoping that with time this side effect would subside, it hasn't. > I am still on the fence on what to do. Maybe I should start over at > 1.5 mg's and increased dosage over several months or just back down my > dosage to 2 mg's. Your thoughts and comments would be greatly > appreciated, thank you, Ivan>

[Guest guest]

Hi Adam. Why don't you call Dr. Lawrence and ask him what he thinks.

I have been on LDN for nearly two years for MS and it hasn't stopped

the progression of disease.

I stopped taking it for a few days, three or four, and I felt physically

that I weighed about 20 kilos more and I also felt depressed so I

decided to start taking it again.

I take 3mgs, I can't take more because of increased spasticity.

Next time I saw my Dr. I told her about this she thought the same thing - if

I felt better when taking it then why stop? I should add that she didn't

prescribe it for me. I got it on my own and told her later.

I haven't had a cold since I started LDN and I used to get two

bad ones a year that would really take it out of me.

I understand how you feel Adam and I hope you come a decision you

feel comfortable with soon.

Kind regards,

low dose naltrexone From: adamt2002uk@...Date: Thu, 18 Dec 2008 18:16:49 +0000Subject: [low dose naltrexone] Whats more important, the Dose or the Response??

Ive been on ldn for 12 months nowfor progressive MS (had for 6 years)Im only 24, and starting 3mg in January with inital great results -better strength , better balance, better bladder for the first 4-6weeks, however the last 10 months have been awful.Symptons became much worse than before starting ldn, weker legs, worsebalance. the only thing that has remained is my bladder.Ive tried from 2mg - 6mg , and i have felt the best when on 2mg, mywalking is best on this dose.I have read 3mg is the minimum to stop/slow down progression, so myquestion is what is more important, the dose, or the response?As on 2mg i feel best (mobility), i have also tried 6 weeks on 4.5mg,mbut it just makes me less mobile.Is it best to go for 3 - 4.5mg , but my mobility/legstrength/balance/bladder suffers.... or shall i go back to 2mg andhave sympton relief?I havent tried 1.5mg yet, but it would probably help more.Thank you for reading, and any knowledgable replies Votre Windows Live Messenger est actualisé gratuitement Cliquez ici!