Re: New user , 6 weeks on LDN, im getting worse

[Guest guest]

>

> Hello ldn users, im a new member.

>

> I have PPMS, for 4 years.

> I began LDN 3MG does 6 weeks ago, first 2 weeks, excellent results.

M

> balance improved, leg strength improved, walking improved, bladder

> improved.

>

> 2 weeks later i started to get worse, legs weakening, balance

worsened,

> walking worse. Decided to up to 4.5 MG, now my left leg is very

stiff,

> it has only been 3 days though.

>

> What is my best course of action, to keep at 4.5MG, or to go back

down

> to 3MG.

>

===========

These inceased symptoms are not unusal. I started LDN at 4.5mg and

experienced numb hands for 3 weeks, extra stiffness in the calves of

my legs for 3 solid months and off and on twitching muscles for 6 to 7

months. And had a few other oddities. These all faded away as my

body adjusted to the endorphin boost. I was chronic progressive MS

Dx'd 1989 chronic progressive, 4.5mg LDN started 4 1/2 years ago and

disease has stopped progressing. sometimes these increased symptoms

do last much longer than 10 days. If the extra stiffness lasts more

than 5 to 6 months then back down to 3mg and if extra stiffness is

severe back down when you can no longer tolerate it.

Dr. Bob Lawrence from the UK who has MS & uses LDN himself explains

why the temporary increase in MS symptoms.

When starting this LDN(Low Dose Naltrexone) therapy in the treatment

of MS, there may also be some initial transient, though temporary,

increase in MS symptoms.

Experience in using this method has demonstrated most commonly, such

as disturbed sleep, occasionally with vivid, bizarre and disturbing

dreams, tiredness, fatigue, spasm and pain. These increased symptoms

would not normally be expected to last more than seven to ten days.

Rarely, other transient symptoms have included more severe pain and

spasm, headache, diarrhea or vomiting. These additional symptoms would

appear to be associated with the previous frequent use of strong

analgesics, which effectively create an addiction and dependency, thus

increasing the body's sensitivity to pain. This temporary increase in

symptoms may also perhaps be explained when we consider the manner in

which this drug is expected to work.

posted by

[Guest guest]

's advice is about as good as anybody knows to tell you. Just try to keep in mind that LDN is about as good as you'll find for slowing or halting any progression. I know how hard it is to be patient...especially when you're at a point where you may be deperately trying to retain what function that you have, but that's about all there is to do:( I weigh 105 - 110 lbs, and I take 3mgs. I've tried 4.5mgs, and either way, I'm stiff as a board. I just know that LDN is the best hope there is. Hang in there!!! Marcie

[Guest guest]

Keep a reasonably detailed journal on your symptoms. If possible, do

some easily reproducible tests such as walking around the block.

Record topics such as how well your foot rolls from heel to toe (h2t),

time and distance to get to certain points in the test, etc.

Easily repeatable tests are necessary to track what this damned

disease is doing. " balance improved " " bladder function improved " just

don't cut it for reliably tracking our MS. There should be a test

such as " stood on beam for 30 seconds "

My journals are kept in Excel. The " auto filter " feature in the

" Data " menu may be used to search and generate reports. I used an

Excel journal to realize and document that Rebif was making me worse,

not holding the MS wolves at bay. An example copy of my Excel journal

is in the 'Pics " section of my MySpace profile.

http://www.myspace.com/alrightguy123

Look for the picture of my hardback journal that says " JOURNAL " . (I

try to implement keep it simple stupid KISS). Human memory is one of

the most problematic data storage systems we have. The blog has

copies of articles on how our minds influence our memories. Write

down the test results as soon as possible to avoid memory problems.

>

> Hello ldn users, im a new member.

>

> I have PPMS, for 4 years.

> I began LDN 3MG does 6 weeks ago, first 2 weeks, excellent results. M

> balance improved, leg strength improved, walking improved, bladder

> improved.

>

> 2 weeks later i started to get worse, legs weakening, balance worsened,

> walking worse. Decided to up to 4.5 MG, now my left leg is very stiff,

> it has only been 3 days though.