This Is MS Multiple Sclerosis Community: Knowledge & Support

i have had RRms for 10 years. i tried betaseron for 2 yrs. didnt seem to make a difference. I have 2 or 3 attacks a year. I am very skeptical of the abc drugs. i am in the middle of an attack right now (typing problems). it seems like all the info and trials were done by the drug companies. does anyone not take any drugs like me? am i nuts not to be taking anything? the doctors just seem to say whatever the drug companies are pushing. i am feeling scared right now because my hands are not cooperating. i know how lucky i have been over the past 10 years. but i feel like i may be pushing my luck. colette

Hi Colette

I don't use any drugs either, but I've only had 2 attacks in 6 years. My neuro said he'd be screaming at me to get on drugs but he thinks I have a mild case. I watched the ABC videos (you know the ones, all those happy people shooting up) and became even more turned off when I saw that I was going to have to keep charts and graphs to remember where to insert my next needle. Anyway, there's too much beer in the fridge to make room for all those drugs. However, I am interested in naltrexone. Have you read about it?

Hi Collette and Amy,

I Have been on LDN now for a little over 8 months. I like it....I haven't had any new symptoms or progressed in disability in that time. There are others who have ben on it 1,2,3,4 or more years, with the same response. Maybe some of them will post here and tell you more.

I have spms now, and LDN is not a cure, andd I have much nerve damage over the last 35 years, but the RRmsers report great symptom relief. Some actually go back to where they were 3 months before starting LDN.

Good luck and good wishes to you both.

Sally

thanks for your replys. LDN sounds very interesting. are doctors recognizing this drug on a wide scale basis? this is the only website that i have seen even mention it. are sleep problems a side effect? -colette

Hi i Elaine and new to this forum so hello everyone.I too only have found out about LDN today sound very promising web site i found was www.lowdosenaltrexone.org I know i will be asking my nuro about it on my next visit

Hi Everyone,

My name is Deb and I found this site via the MGH Braintalk site and I think it is great there are unsullied (read that as no drug money) sites out there.

I am happy to be on the ground floor, so to speak, of a new site since I seem to pop in on sites that have been around for awhile and it is hard to work your way into a new group.

I was diagnosed RRMS in 02/00 and started Avonex June 01 for 6 months, then Betaseron for a year then developed some whopping neutralizing antibodies (NAbs) and had to stop all interferons. Started Copaxone in June 03 and had recurrent chest pain so stopped the C. Now I am on Lipitor 40 mg a day (my choice).

I relapse every November/December no matter what I've been on. I have had relapses in the spring (Optic Neuritis mostly) when I have not been on any kind of treatment. I just went through a relapse of ON, leg weakness and fatigue and did my 1st ever round of IV Solu Medrol and then promptly got bronchitis/pnuemonia afterwards.

My neuro gave me the option of going back on the interferons in January if the NAbs have dropped, but I don't think I want to. While on interferons, I didn't improve, I felt worse, I still relapsed as often so for me I can't say it is worth it.

I am not quite sure about the LDN. I have to have more proof than just one website and testimonials. Plus I am on narcotic pain meds for MS and fibromyalgia pain so LDN would be counterproductive for me. But if it works for others, it works, so who cares? It is an individual decision as all medical decisions should be.

This is wordy, I know, wordy person that I am. I hope that this can be the beginning of a good thing for a lot of people. Nice chatting with everyone. Take care.

Deb


`What?

....I'm MSndrstood

hi everyone, just wondering if anyone is on the Swank Diet?I have been on it for 12 month with Betaferon and touch wood no relapse

Hi to all that are even considering the LDN. I say good for you. So many are just not sure about and I say to you please give it a try. It is very harmless at such a low dose of 4.5mg. I know for a fact that several very intelligent people who don't even have MS are taking it daily to ward off cancer. You see it acts on your body by causing it to create about 200% to 300% more endorphins. This in turn regulates the immune system back to normal. A healthy immune system is all any of us need to ward off cancer and to keep this darned MS in check. I've been taking my little pill once a day now for about 19 months. I was on a slow downhill path when I began it and no further progression that I know of at this point so I shall never give it up. It is relatively cheap too. I pay about $37.00 for a 90 day supply so I don't even have to claim it on insurance....yikes, my monthly deductable is more then that. I tell people that cannot take those costly MS drugs that they certainly have nothing to lose by taking it. I just wish that people would come back and report on how well they are doing after a few months with this therapy. I'd be happy to answer anyones questions if they e-mail me at wkendz32@hotmail. I spend a lot of my time trying to spread the word on this topic cuz I say to myself...where would I be if someone had not shared what they knew with me. I've become quite informed on all of it...had to. Oh and one word of caution...please do not be turned off simply because your neuro pooh poohs it...not quite sure why more of them are not willing to go outside the box and give it a try. It's all a money game....sheesh. Good luck to you all and Godbless...JoyceF

I've been thinking about that. I don't think it's a money game, not directly. It's more of a fear factor, it's more of a risk than many are willing to take. Their motto must be, don't do anything you wouldn't want to see on the front page of a newspaper (or nowadays, maybe even including the web).

My pcp told me last time that anything he would agree to, he would be responsible for, so he won't send me for blood tests that I want, because then he's responsible for the results. I'd have to ask my neuro to send him a letter requesting it, or give me a referral for it himself... but the last time I was to the neuro, I asked him about blood work and he told me to talk to the pcp!

However, it was my own neuro who let me have the scripts, and I'm really surprised that he did it... so you do have a point, many should be willing For You, their Patient that they care oh so much about. I told him I will be his guinea pig, he wrote up a piece of paper in that doctor handwriting and made me sign it. He said it states that I am requesting this and that I take full responsibility for any adverse reactions and that I'm doing this against his advise. But he gave me the script, and when I asked for multi months worth, he gave me a script for X60 and then when I wanted to try 4.5, he gave me a script for X60 and 180 1.5 MG caps.

He makes his comments, smiles, I do whatever he asks in the office, and he says come back in 3 months... my pcp said I'm doing him a favor, he knew I was going to get the LDN ANYWAY, so this way he gets to see me for 5 minutes, gives me a few pricks with a safety pin, makes me squeeze his hands, and says come back in 3 months again.

You are right Larry, I like to think that at least half of these doctors really do care but their hands are essentially tied. That is why I ask the question...what if it was you or a family member. What therapy would be the best one then? I think that some of these doctors kind of like all the perks they receive from the large pharmaceutical companies. After all...you are just a patient that, after the end of the day when all is said and done he really doesn't think about..he has a family to go home to. Come on....realistically speaking..that is human nature. A job is a job. That is the very reason that I am so so proud of myself for finding something that is essentially keeping this MS monster at bay for ...well until a cure comes along..the way I see it. I think it is important for all of us to escape from the brainwashing that we all are under when it comes to the pharmaceuticals and the fact that they are certainly not in this to help any of us. By the very nature of all of this, they would be very disappointed to have any one of us actually cured. Their bread and butter comes from all those poor saps that are paying money that most can hardly afford for drugs that they have created diseases for. Has anyone thought about how many commercials are on the tv now just for drugs...this is big business. You are right though when you say that the doctors are not in it as much from that angle. I'm sure they are loving all those free trips etc and all those other things that the drug companies shower them with. I will forever be changed after all that I have seen these past few years but again am surely thanking God for the internet...*S*

If I was going to try a drug therapy that was different from the CRAB drugs, I think I would like to try a statin -- you know, a cholesteral modifying drug. Something about us all having "sticky platelets" isn't good for MS, or something like that. The cost would be considerably lower than an injectable med, and (big benefit!) it wouldn't have to be injected. I admit that I don't shoot up as regularly as I should because it's just such a pain in the a$$ (arm, thigh, abdomen).

That could also have something to do with why people who are Swanking do better: it's affecting their stickey blood for the better!

Oh boy...as far as cost...don't think you can beat the cost of the LDN. I get a 90 day supply for only $37.00. Can't even claim it on my insurance cuz my monthly deductable is $50.00. This one is not an injectable either which goes a long way for me. Oh and I think I have been reading that those statins are not quite as safe as they had thought...not really sure but please be careful. I have heard of that sticky blood theory and really don't know enought about it to comment on that. Could be something to that but my money is on the very thing that regulates my immune system back to normal working order. I have to think that this might just prevent a ton of other ailments later in life....nice perk I'd think. After all, what are we without an immune system that is in good working order?

Im like Amy, mild case and doctor wasn't wanting to start me on such heavy drugs, plus their expensive. I use an inhaler for asthma and have other health probs I take medicine for, I feel lucky to not be in bad shape with ms after these years since I was diagnosed. I only had two sort of bad flares many months apart, and other signs, but nothing serious. I do the Swank diet though, just feel better when I stick to it, its easier on my digestion if nothing else. I wouldn't tell anyone else to not take the drugs though cause everybody is different.

I spoke with my neuro the other week who told me that the ABCR drugs will not stop the MS from progressing. He said that if my MS is going to progress it will an there is not much one can do.

He also told me that he does not think that my MS will progress much further (how can he tell?)

that has me all confused.

As far as I know, there is no way we can tell, no "litmus" test.

I have PPMS after being DX with RRMS at first, and a now an MS Ambassador (public advocate), and am on the WEB Every day (retired and bored, but busy)....

My understanding is that the ABC Drugs work for some, some drugs suit some people, best case is less regular 'attacks', less in number, slower progression?? How do they know ? Statistics, test results, placebo trials, all the normal methods of comparison...

and you know what they say about Statistics, and damn lies,.... it's all in the interpretation.

My explanation when speaking to groups is.....

You may as well try, it may even work, nobody really knows whats going to happen.... a positive mental attitude helps, (I laugh a lot, usually at myself....)

A long comment... but when you have read about and seem changes like I have, I have real trouble believing anyone that claims to actually "know" anything...... if he 'knows' what is going to happen, he would be the first. He may have an idea, he may be reading signs, he may think one direction is likely.

For me, there is no way he "knows anything", it is all based on the statistics....

_________________
Regards,

Peter Anderson
http://www.mswebpeople.com/
MS WEB PEOPLE

Melbourne Australia.