Skepticism & MS

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Hello Everyone,

Thu, 13 May 2004 09:55:16 +0930 From: " Louise de la Lande " wrote:

Subject: re s response to my Post

Hi , Its because of the gap in mine and my mothers MS symptoms

without any treatment whatsoever.So when I hear of somebody being

having recovered for 15 years because of such and such a

treatment ,Iam sceptical. I will only fully believe the LDN story

when i see MRI's of all types of ms ( the 4 different patterns) ,as

followup. BUT i still take ldn, i dont love it ,but i want to see if

these encouraging signs last. Im sorry , I was brought upin

a " Science " household ,studied it , andthat is a hell pf alot of

conditioning to get rid of overnight. Its also quite useful at times.

Kind regards Louise OZ

Louise,I empathize with where you're coming from. I, too, have a

healthy streak of sketicism and enough common sense to keep me out of

trouble, for the most part. I've been dealing with MS for quite

awhile, dxd in 1982, and have experienced it`s extreme spontaneity.

Initially having been prescribed Prednisone during my first attack,

and experiencing it's horrendous side effects, I decided I would not

take it if prescribed again. It was, I didn't, and because that was

all the neuro's had to offer, I didn`t go back to them. I proceeded

to live my life dealing with the same symptoms (extreme fatigue,

knees buckling, off balance, etc.) coming and going, at times gone

completely at others visiting more often and staying longer for the

next 13 years or so.

Basically sleeping from Nov. to April got to be too much, and I

called on a neuro again 7 years ago or so. She wasn't sure I had MS

even after my exam and history (all of my CT scan and records had

been destroyed) until after my first MRI, then said it was benign.

Hadn't felt benign, at least not what benign implies to me (unless

she meant it wouldn't kill me, lol)but considered myself lucky. Later

she prescribed Amantadene for my fatigue which helped a lot for a

year, maybe 2. Over time I was hibernating again, so 2 years ago I

stopped taking the Amantadene. She had been pressing for the

injectables, I had been resisting, but finally resigned myself to the

idea. But I started feeling better after stopping the Amantadene, 2

months later I was put on a heavy course of Amoxicillin (500 mg/day

for 3 wks) by my dentist. Shortly thereafter I awoke to a miracle, I

not only felt better, I was better. Better than I had been in years--

a decade--2. My miracle continued, and when I saw my neuro a month

later she dismissed the need for any injectables. Even through the

stress of losing a loved one to cancer, my miracle continued with

only an occasional mild flare until last summer. Emotional stress

sent me into my worst attack ever--bedridden for the most part from

July to October. Started Copaxone in Nov and went immediately into an

attack that was by far the worst ever. Bedridden again through

January with new symptoms and more profound old ones.

Have slowly been recovering, and trying to get on LDN, but my flares

are very intense. Full body tremors and excruciating spasms caused me

to seek relief by trying cannabis. Thankfully, unbelievably it helped

incredibly. When my flares present with dense brain fog, total

exhaustion, complete weakness and the inability to speak coherently,

etc. just a couple of hits avoids as much buzz as possible but

immediately eliminates all of my symptoms and allows me more energy

than I've had in months. This has all be very recent, and I hope with

my entire being that it continues to help, but I don't know if I will

build up a tolerance or something. I would love to try LDN with my

neuro's help but will do what I have to to get it, and I realize the

sooner the better.

MS is an insidious disease of extreme variables. It rears its ugly

head as it pleases. It's hard to prove results are not spontaneous

remissions, but it's hard for me to argue with anyone benefiting from

one treatment or another. I know my physical being better than

anyone, and I know when I'm doing well and when I'm not. For me

that's a given to others as well. In all these years I'd never

pursued any of the various treatments out there or " jumped on any

bandwagons, " as the medical community likes to put it. Neither do I

believe I'm grasping at straws in desperation wanting to try LDN.

I do have some healthy skepticism, especially considering my own

experience with MS. But with all my scrutiny of LDN, while relying on

the testimonials of others, the science of LDN intrigues me and makes

more sense to me than any of the approved meds for MS. Sorry to have

gone on like this, just wanted to let you know you're not alone.

Take care all,

Lesa