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LDN Update and CCSVI

Posted Aug 20 2010 1:36pm
As I wrote about awhile ago about Low dose Naltrexone (LDN), I was telling about what I have seen in improvements and no- improvements.

I always have to remind people that when I started LDN, I was looking for huge improvements with the MS and Fibromyalgia. I also was hoping for changes with the Chron's. I have been on LDN now for a little over 3 months. I have found that I am stuck at 3.0mg. When I up the dosage things seem to start declining again. I am shocked that the LDN at this level has helped the Chron's and minor changes have occured with the MS and Fibro. I don't know if I should call them minor, I think I would say that LDN has helped those disease symptoms, just not the symptoms I was thinking they would help with. The changes/ improvements have been enough that I have no intentions of stopping the LDN. I also feel strongly enough to say that I wish I knew about this treatment 4 years ago. I feel that if I would have started with it, I probably would not have the permanent damage that has already taken place. If and when someone newly diagnosed comes to me, I will tell them to look into this treatment.

The hardest part, is that when you are first diagnosed with a disease, you feel like your life is in the hands of the Doctor. You trust that they are doing everything they can to treat you to the best of their ability. I disagree. You have to be your own advocate. You and your doctor must work as a team. Don't ever be afraid to question them or bring new ideas to the table. If you feel that you are not being being listened to or getting answers to the questions you have, then it is time to find a doctor that is right for you. I am in a situation that my insurace tells me where to go. I have the best Neuro at the clinic but we do not see things eye to eye. Not many Doctors/ Neuro's will prescribe LDN at this time. They claim that it is not approved by the FDA so they don't feel it works. Well, maybe they are right for some people but when you have a disease like MS, there isn't many treatment options. My Neuro seems to think the only treatment is Steroids and then medications to treat all the symptoms. My suggestion to my Fellow MS'ers is to research and learn what all there is out there and decide what you feel is right for you. Sometimes doctors will say No and they will have a good reason that will make you change your mind. If not then go with your gut.

CCSVI is the big rave right now. I am learning what I can about it. I had an open discussion with Fellow MS'ers on Facebook the other day. Wow, it is a heated topic and many opinions. I don't really know where I stand on this procedure. I do think that there is proof that it does help some patients. It is too early to tell what the end result is for them. At the moment they are doing great and seeing a huge difference in their lives. A stent and/or angioplasty makes me wonder if they will need to keep repeating this procedure throughout their life. It may be worth it if it gives them a better quality of life. The discussion became very heated, which leads me to believe that there is more studies and research to be done.

What I have gotten out of everything is that this has been a great year in advancements towards finding either a cure or better treatments for us. And that in itself is great news.
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