Re: FVC test result (First report - ALS - Six weeks on LDN)

[Guest guest]

Hi all again,

Just thought I would update you with my lung function (FVC) test result.

Normally I am tested every three months and since my diagnosis my FVC

has consistently dropped by between 4 & 6% each time. This test

yesterday was actually just over three and a half months since the last

test, so I would expect that the test would had come out with a 5 or 6 %

drop. However, the good news is that it had only dropped 2%! Yippie!!!

That 2% drop instead of say 6%, I believe is due to the fact that for

the past six weeks I have been on LDN. The specialist was most

surprised.

I told my neuro the day before that I had begun taking LDN. She had

heard of it, but not being used with ALS/MND patients. She was

surprised to hear of my improvements and perceived plateauing. She said

that if I continue to do well on it, then they might conduct their own

trials on LDN. She is part of a neuro team in a neuro ward in a

hospital. So I was encouraged by her positive response.

Thanks again for all your support & encouraging replies.

-n

>

> Hi all,

>

> Thought I'd shared how my time on LDN has gone thus far. I have ALS,

> bulbar onset, dx'ed March 2009.

>

> At the point of commencing taking LDN, my condition was as follows:

> - Still mobile arms and legs, but weak - for the two weeks before LDN

> the range of motion in my arms was becoming noticeably more limited.

> - Head drop becoming a problem and causing major discomfort/pain in

neck

> due to weak neck muscles;

> - Speech was unintelligible to basically everyone;

> - Mucus starting to become an issue (had two mucus stridor attacks in

> weeks before LDN) - need to dilute thickened saliva becoming very

> frequent.

> - Lung function restricted (FVC about 50%)

>

> I commenced with 1.5mg LDN for one week, 3.0mg for four weeks and at

> this point just about done one week at 4.5mg.

>

> Over the whole time, I have only had about three nights where I

consider

> that my sleep was affected. Each of those times I woke around 3 or 4

am

> and was not able to return to a deep sleep. Once, I didn't sleep any

> more that night and the other two I slept later on between 6:30am and

> 9:am . I have not had any issues with " vivid dreams " .

>

> During the first week I experienced the return of some leg cramping.

> This was a big issue early in my dx' , but more recently had faded

away.

> I saw the return of cramping as a positive sign, but after the first

> week it settled down again.

>

> Within a couple of days of LDN, I noticed that my increasing mucus

> issues were greatly reduced. No more stridor attacks and need to

> dilute thickened saliva has only occurred once.

>

> No real change in speech quality - yet!

>

> My strength improved slightly, but again noticeably. My range of

motion

> in arms and legs improved slightly. The restriction in arm motion

that

> was coming on before LDN, reversed. Neck muscles feel stronger

> Although bringing head up from a looking down position still takes

> effort, the continual agonizing pain has reduced by 90%. Much

easier

> to hold head upright.

>

> Ever since my dx, I could usually notice the steady progression of my

> ALS from week to week - only slight variations, but there nonetheless.

> Ever since commencing LDN six weeks ago, I have not noticed any

> progression at all. There have been the small number of improvements

as

> listed above that all came soon after commencement, but otherwise I

> seemed to have plateaued for the first time since my dx.

>

> I normally have a lung function (FVC) test quarterly and due for my

next

> one tomorrow. Although I haven't been on LDN for the full three

months

> since last test it will be interesting to see what he result will be,

as

> since dx, my FVC decline each quarter has been fairly constant.

>

> So, I am VERY happy with how LDN is helping my ALS condition. I will

> definitely be continuing with it. As so many LDN users have said

> before me, " I only wish I had found out about it sooner! "

>

> Thank you to all who on this group who were so helpful in getting me

up

> and running - and for the continual encouragement.

>

> - n

>

[Guest guest]

Good on you, great to hear about your good results. Please keep posting, we all

like to hear a postitive report, and with ALS at that! Brilliant!

Silvia

>

> Hi all again,

>

> Just thought I would update you with my lung function (FVC) test result.

>

> Normally I am tested every three months and since my diagnosis my FVC

> has consistently dropped by between 4 & 6% each time. This test

> yesterday was actually just over three and a half months since the last

> test, so I would expect that the test would had come out with a 5 or 6 %

> drop. However, the good news is that it had only dropped 2%! Yippie!!!

>

> That 2% drop instead of say 6%, I believe is due to the fact that for

> the past six weeks I have been on LDN. The specialist was most

> surprised.

>

> I told my neuro the day before that I had begun taking LDN. She had

> heard of it, but not being used with ALS/MND patients. She was

> surprised to hear of my improvements and perceived plateauing. She said

> that if I continue to do well on it, then they might conduct their own

> trials on LDN. She is part of a neuro team in a neuro ward in a

> hospital. So I was encouraged by her positive response.

>

> Thanks again for all your support & encouraging replies.

>

> -n