[Lori Grimes]

Hi everyone,

I came across this site while googling some treatments for MS.

I'm 30, F diagnosed 3 years ago and have RRMS...I was on copaxone for a year. It was painful (duh!) and whne I skipped a few doses while on a brief holiday or not being able to get my meds in time, I found that when I started injecting again - I got optic neutiris and other symptoms. I stopped taking it last Aug and have had nothing noticiable happen.

However, my recent MRI shows more lesions (quite a few) and a bunch in my cervical Vertebrae area which has be very scared.

I hate medication. I also believe my condition was brought on or at least agitated by the Gardasil vaccine and I am not a fan of MERCK (rebif) or many other pharma companies because I have researched the side effects of many of their drugs (including the deaths etc from Copaxone and I have experienced the dreaded shortness of breat, heart palpataions after it a couple of times)

I do not want to go on genilya or the other tablets that require ekgs, checks on various parts of the body because I don't want to put much more into my body and create more issues.

I'm not a hippie, I'm not a kook...I just think that I've done my dash and don't want to disrupt another system besides my CNS which these drugs seem to entail doing.

I've read about LDN but as someone who is poly-cystic I am apprehensive to look into something that would make more cortisol in my body.

Is there anything anyone can tell me?

[Erika]

Hello Lori,

Welcome to our community. Sorry that it is under such circumstances but we are here to share information and support, so hopefully being here will help you.

I'm not sure about the cortisol effect of LDN. My understanding is that it has the greatest influence on endorphin levels. I have been using it for the last year or so with good results. It takes the edge off of the symptoms of MS, chronic digestive issues and also seems to help my body heal faster from various set backs. Most importantly it has restored cognition and keeps the 'cog-fog' at bay. That was the main concern when I too started looking for something that wasn't a strong medication with potential negative side effects. So far LDN has only provided benefit for me.

Had I known over 30 years ago when I was diagnosed with MS, and had the medications that are available now, been available then, I would have kept trying theDMDs until I found one that both worked and that did not cause too many side effects.
Since that hindsight was not available as foresight and the current medication options were not available then (predisone was about it, and I can't take that one), my options are now quite limited. The damage to the nerves and brain now progressive, with no remission in sight. The DMDs are not effective for SPMS and so the window of opportunity to prevent further lesion activity (the lesions that are present simply get worse), has pretty much passed in my case.

I wish a continued symptomatic remission for you, but urge you to consider medication (even if it is only LDN); especially since there is evidence of increased lesion activity in the spine.
They may be symptomatically silent now, but might not remain so. Symptomatically speaking, spinal lesions seem to have the capacity to cause the greatest level of impairment, so if there is a way to slow their progression, I would advise you to continue to research it as well as to seriously consider medication options. Yes, it may come down to choosing between the lesser of two evils, as it were.

Are you under the care of an MS neuro that you can discuss your options and concerns with?

With love, Erika

[SallyC]

Welcome Lori.. I've been on LDN for over 10 years now, after trying
Avonex then Copaxone. The only thing they say you shouldn't take
LDN with, is narcotic pain killers, because the LDN may cut down the
power of the narcotic.

Besides what Erika mentions, I find that it keeps my MS on a plateau
and I've not progressed in disability, in many years. I am also SPMS
and use a scooter to get around. Don't walk much anymore. I chose
to stop walking, after DH died and I was falling and could no longer,
get myself up.

[NurseNancy]

welcome lori,

i wish i knew enuf to answer your Q's but i don't.
i wonder if an MS specialist with a Ph.D. in pharmacology could help in your quest.

my former neuro in Denver, CO; Allen Bowling MD, Ph.D. wrote a book on complementary medicine that you might find interesting. can't remember it's name.

let us know how you're doing.

[Jules A]

I'm not sure what you are asking for.

Erika's suggestion to contact a PharmD if you are truly interested in pursuing medication in an effort to hopefully stall progression of this miserable is a good one, imo.

If you want those of us who believe in the value of trying every available medication option we can to share our thoughts just let us know.

It kind of sounds like you have made up your mind and if that is the casse and you want positive stories or encouragement not to medicate, there are many here who will support you and can share their thoughts on why they have chosen that path.

Good luck with whatever you decide.

[KJ MAC]

Is it acceptable to talk about HBOT Hyperbaric Oxygen Therapy on this board. HBOT is widely available in Europe where they have used it to treat MS for 30 years with some good results.

*admin edit*
*admin edit*

There is a center in the USA that is offering a program of low cast bi weekly HBOT for MS.