LDN and HSP

[Guest guest]

I am an HSP-person, originally misdiagnosed with PLS, as was my father, I

have had symptoms since 1968, perhaps even earlier..and had been walking with a

walker for a number of years. On the morning of May 6th 2005 when I tried

to get out of my bed and into my walker, I was unable to do so, Couldn't stand

on my own two feet and have been in a wheelchair ever since. When I heard

of LDN my doctor enthusiastically put me on it, After several months I

underwent a simple test. I was lifted into my walker and could stand there on

my own

two feet and was even able to take two steps forward and one backward.

Perhaps that was not a large improvement, but it was an improvement. Am

continuing

on LDN and can't wait for my next test.

Dr. Levy, Ph.D.

[Guest guest]

Hi ,

Great news on the improvement but just a clarification for those who

seek to try LDN. Its main purpose is to slow or even stop progression.

In probably 30% - 40% it can also give improvements, in some cases

subtle and in some cases almost miraculous, but EXPECTING improvements

is a recipe for disappointment. Take the LDN aiming for slowing or

cessation of progression but not expecting improvement. If you are

lucky enough to experience improvement treat it as a big bonus, such as

was lucky enough to have.

Also, even if you don't think LDN is doing anything try to stick with it

for at least 9 months before giving up as in some cases it can take that

long to have an effect. Others are luckier, with some noticing huge

improvements in urinary urgency for example the very first night. In my

case my urinary urgency problems improved at about the 9 month mark.

MLevy@... wrote:

>I am an HSP-person, originally misdiagnosed with PLS, as was my father, I

>have had symptoms since 1968, perhaps even earlier..and had been walking with a

>walker for a number of years. On the morning of May 6th 2005 when I tried

>to get out of my bed and into my walker, I was unable to do so, Couldn't stand

>on my own two feet and have been in a wheelchair ever since. When I heard

>of LDN my doctor enthusiastically put me on it, After several months I

>underwent a simple test. I was lifted into my walker and could stand there on

my own

>two feet and was even able to take two steps forward and one backward.

>Perhaps that was not a large improvement, but it was an improvement. Am

continuing

>on LDN and can't wait for my next test.

>

> Dr. Levy, Ph.D.

>

>