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I Decided To Listen To My Neuro

I Decided To Listen To My Neuro

I was diagnosed in 1999. It stLDNed as relapsing remitting and just last year the category changed to secondary progressive. I was told told by my neurologist that I needed to do something aggressive to slow down the MS. He told me I needed to do chemotherapy and sent me to the chemo doctor. I guess I was scared and decided to do whatever the doctors told me and have had my first of two years worth, every three months, chemo treatment of mitoxantrone
a friend of mine has told me about LDN and… read more

posted about 9 years ago
A MyMSTeam Member said:

Hi ban1305 -
I take 4.5mg of LDN at night. Been on it for 7(?) months now. Whether or not it is doing anything I don't know - we'll find out at my next MRI. I know that it has greatly reduced the spasticity I had been experiencing at bedtime so that's a plus. I was diagnosed (PPMS) in April of 2012 so I'm not sure that I am the expert opinion you are seeking. My neuro wanted me to try Rituximab before I opted for the LDN and she wrote the prescription. Skip's Pharmacy in Boca Raton, FL. The other option that might be worth researching is that I know they've begun to use some of the HIV drugs to battle MS with moderate amounts of success. I would look into that as well. Best.

posted about 9 years ago
A MyMSTeam Member said:

Thanks, cant wait!!!!!

posted about 9 years ago
A MyMSTeam Member said:

I have been reading the book and the literature I have receivedand I found it hard to believe that something so simple could help such a big thing however I'm starting to get excited because LDN is being found everywhere on the internet not just from a book written by a stranger but on credible MS websites as a viable possible option. So screw whatever my neurologist and my chemo Dr has to say I'm doing this I'm tired of the sickness the hair loss and the fear of what else can happen to me while on chemo.

posted about 9 years ago
A MyMSTeam Member said:

I have never been on LDN but I have read so many good things about it. I'm not on anything right now because I'm in remission. But if I need to go back on a DMD I am choosing LDN. I have read that the majority of the people taking it haven't had a relapse since been on it. I'm not telling you to take it I'm just telling you what I've read and what I'm going to do if I have to go back on meds. Good luck Hun!!

posted about 9 years ago
A MyMSTeam Member said:

LDN is all over the web. Pretty thorough documentation too. I think part of the problem might be that there is no money in it for the powers that be. I know that's a really simplified view on things but.....

If your neuro is that cut and dry about your prospects then what is the basis for your neuro's preferred route of treatment? It just makes no sense. Should you not be allowed to throw whatever you want against a disease that is going to rob you of your mobility?
Should you not be allowed to be your own mad scientist?

MS sucks enough as it is and I'm sorry to say that I think you got dealt the suckiest version of it.

posted about 9 years ago
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