Lots of questions

legzzalot · 11-05-2008, 09:49 PM

I read your reply to the question about LDN and something you said stuck out. I was just diagnosed last Friday and now we are trying to figure out how long I have actually had this. I was also Dx with Graves disease back in 99.

You were talking about lifestyle and dietary changes, and you mentioned something about cutting out dairy. Does this help?
Obviously me being new at this has led to many questions for my next appointment which is on Monday, and one of the biggest questions was what I can do to make it better.

The stress part is never going away it seems between working full time, going to school part time and being a mom. But I have had a really really bad week and I have noticed that I wake up in the morning in so much pain that I am forcing myself to take a day off tomorrow. It is my birthday and I refuse to go to work!

My neuro is a wonderful person who is a little more personally vested as his sister has progressive MS. HE is recommending Rebif, but we have not gone over all of my medical history including the bipolar/anxiety issues I have had on and off for years. He did tell me there is a drug in pill form that is in the final stages of FDA testing and would hopefully be on the market in the next 2 to 3 years that has been shown to reduce relapses by over 60% could this be LDN?

Quote:

Originally Posted by lady_express_44

Hi Brenda, and welcome to NT.

I have had MS for sure since 1991, and probably a lot earlier . . . I liked denial.

There were no meds available when I first found out, so I didn't see the point in dwelling on what "might" be in my future. By the time I was knocked into reality, I had had the disease a long time, and was still doing ok (compared to many who had it for much less time, and/or were on the meds), so I didn't see the point in changing what I was doing in a big way.

I had reduced my stress level (got out of Mgmt), tried to eat better/exercise more, cut out dairy, AVOIDED/treated the first sign of INFECTION (to the best of my ability), etc. That might have helped to keep me relatively stable, and even now my neuro says there is no drug on the market that is proven specifically helpful for spinal lesions (which are my main issue).

I was basically left to my own devices, and found people talking about LDN. My doc was not keen on rxing it, but after a big fight where I threatened to get it off the internet from Mexico, he finally gave in. I've been on LDN (alone) for about 3 1/2 yrs now.

LDN has been a miracle drug for me ... BUT it does not save me from myself. It is still very important to not push ourselves too hard (as tempting as it is at times), and to TREAT infection immediately.

My recommendation is for people to try Copaxone with LDN ... for double protection. Sometimes people can't handle one or the other, in which case you have no choice . . . but if you have the choice, why not do "everything that you can"? I would suggest you adapt to ONE drug first though (for at least 3 months), and then try to introduce the other.

Cherie

mom2five · 11-05-2008, 11:21 PM

Quote:

Originally Posted by legzzalot

He did tell me there is a drug in pill form that is in the final stages of FDA testing and would hopefully be on the market in the next 2 to 3 years that has been shown to reduce relapses by over 60% could this be LDN?

I am curious about this...can you ask when you go and then let all of us know? I actually have mixed feelings about LDN getting FDA approval, because I worry that it will drive the price up. From what I understand, right now it can be obtained for anywhere from $10-$40/month. I don't want to see that change and worry that it might.

Man! Am I suspicious of pharmaceutical companies, or what?!

weegot5kiz · 11-06-2008, 07:01 AM

Brenda I start LDN on 8-8-8, I say if you can avoid any med do so regardless of what it is, but thats me I allowed docs to test and prod me and pump me full of pills for first year and half, then informed my doc i dont want a ton of pills to take two, sometimes three times a day, I would like to keep my liver thank you very much.. and I approached him in a semi whimsical and thoroughly thought out position, and he has worked with me ever since regarding my distaste for pills, and yes I understand sometimes pills is what is needed, but if I can by adapting ignoring and possible natural remedies(i dont mess with these too much, yeah and ive got a bridge in brooklyn for sale)

but if I can get away with not taking excess of pills then coolie ohs to me, you keep edumacating

yourself and you will be fine, information is a good allie

legzzalot · 11-06-2008, 10:25 AM

Will do. And sorry guys I totally meant to send that last one as a PM. But seriously how does dairy effect MS?

lady_express_44 · 11-06-2008, 02:24 PM

We don't know if dairy affects MS, but some people have theorized that it MS is caused by "leaky gut", and suggest we stay away from dairy.

I am allergic (or maybe just sensitive) to either a protein or the calcium (can't remember) in dairy. I had several health issues that pointed directly at the necessity to avoid dairy, so I mostly cut it out about 30 yrs ago. The only time I consumed a significant amount of dairy after that was when I lived on a farm in New Zealand . . . and within a month of arriving back home, I had my first serious MS attack.

If dairy does have anything to do with MS, it may be the reason that I am still relatively ok after 18 definite years (possibly 30+) with MS.

There is more information about dairy and MS in the theory behind the "Swank Diet", which some people try to follow to manage this disease.

Cherie

lady_express_44 · 11-06-2008, 02:48 PM

Quote:

Originally Posted by legzzalot

He did tell me there is a drug in pill form that is in the final stages of FDA testing and would hopefully be on the market in the next 2 to 3 years that has been shown to reduce relapses by over 60% could this be LDN?

No, there are several oral meds that are currently undergoing large clinical trials for MS, including; FTY720, Trimesta (oral Estriol), BG00012 (also called BG-12 or dimethyl fumarate), MN-166 (phosphodiesterase inhibitor used for asthma), Cladribine, Laquinimod (or probably others I am forgetting) . . . Which one is boasting a 60% reduction in relapses, I'm not sure . . . maybe FTY720.

In the meantime, there is plenty of research going on to determine what causes the damage in MS . . . so by the time they get to market, maybe "reducing relapses" might not be considered the "right" thing to do.

There is already some research indicating this theory ...

Quote:

Originally Posted by mom2five

I am curious about this...can you ask when you go and then let all of us know? I actually have mixed feelings about LDN getting FDA approval, because I worry that it will drive the price up. From what I understand, right now it can be obtained for anywhere from $10-$40/month. I don't want to see that change and worry that it might.

Man! Am I suspicious of pharmaceutical companies, or what?!

It is highly unlikely it will EVER get FDA approval for MS . . . so I don't think you need to worry about the cost going up any time soon. The type of trials that are needed to prove efficacy for disease progression will NEVER happen, simply due to cost & profitability on the drug.

The small trials they have done, or would like to do, are to prove its efficacy as a symptom management drug. Those trials are not nearly as expensive and if they prove its effectiveness for symptoms . . . people will get the added BONUS of no progression with the disease.

Cherie

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