Tuesday, December 19, 2006

insideMS issure arrived

My insideMS magazine came yesterday. I use to look forward to the publication because I wanted to see what was going on in the world of MS. This time it says on the cover "Gaining Momentum, A World Free of MS". I couldn't wait to see what it had to say. Needless to say I am more convinced than ever that the National Multiple Sclerosis Society is not a true non-biased group. I open the cover and what do I see? An advertisement, 3 full pages (glossy color pages), of an ad for Copaxone. So, I started to see how many advertisements there were. The magazine is 63 pages long and there is 17 pages dedicated to ads. Hummmm, that is nearly 30%. So I started thinking "I wonder who is really paying for this magazine"?

I turned to an article entitled "What's Going On With The Disease-Modifying Drugs?'. They proceeded to tell you why you should be on these drugs making claims like this:

"'People stop their drug because they lose faith in its effectiveness,' said ......"

and goes on to say:

"Despite the scientific evidence, many people simply aren't convinced. The major effects are deep within the brain, where they can't be seen or felt. And while meds lessen the risk of having new attacks, people taking them faithfully may still have some attacks. Moreover the drugs don't affect symptoms. Some are enduring shots and side effects without seeing any clear benefits."

Now....I felt so terrible after reading this article. I felt like I had stupidly decided to stop taking my miracle drug and would suffer the consequences. While talking to my husband I realized that that quote above sites "scientific evidence" but doesn't say what that evidence is. I started looking at the other articles and realized that all their claims are the same. They site studies but do not say what exactly the studies are, who conducted the studies, who paid for them, and what the actual results are. My husband said that I am 100% better than I was when I was on the Betaseron. He reminded me that I daily (many times a day) would complain of how bad I felt and my favorite comment was "I guess this is who I am now". I no longer make that statement and I walk faster than him on our nightly walks. As I think back over the past 5 years (the time I was on Betaseron), I realize I have steadily worsened. I had more plaques in my brain, I had more disability and several new attacks. I know it has only been 2 months, but I am so much better on LDN. My mental state is so much better which is because I can actually do things!

If you are reading MS information, be sure you are looking at honest commentary. Check out who is advertising and pushing the information. One thought....why does insideMS only talk about alternative therapies that don't require you stop the standard drugs. I guess it is ok to take fish oil as long as you keep up the interferons!

One more thing....a bruise I had from one of my shots finally healed. It took 3 months.

If you would like to see what the National MS Society says about LDN, click HERE. I wonder why they don't fund a trial? If you do a google search for low dose naltrexone, you will find 270,000 hits. If you would like to contribute to a study on the use of LDN in MS click HERE.


Geno said...

it says right on there that you got it for us!!! thanks again. don't worry about your meds. all those magazines are owned by drug companies anyway.

Anonymous said...

Thanks for the post. I appreciate your skepticism. I was recently dx-ed and had a devil of a time trying to figure out which of the ABC drugs was the most effective. In the end, I realized that the descriptions for all three drugs were hopelessly self-serving and I had to make a decision based on SEs and frequency of use. I tried Copaxone but couldn't take the the site reactions and have moved on to Avonex, which has its own set of problems, as you undoubtedly know.

The reason I think that the drugs may help is because doctors have told me that people dx-ed with MS seem to do a lot better than they used to when they are on these drugs.

But I will bookmark your blog and look for your future comments on your experience with naltrexone.

Good Luck.

Pam Pensiero said...

Geno! Sorry....I guess I missed that part! I love you! I loved your post yesterday! Don't forget to send the pictures!

Pam Pensiero said...

Thanks for your comment. I don't know if you saw my previous LDN posts, but I had been on Betaseron for 5+ years. For the first year or so I had the flu like symptoms but struggled through them taking the shot at night. I seemed to do ok after that until about 2 years ago. Then I started to steadily decline. When I say that I mean....I started having more trouble walking, there was times when I couldn't hold a pen and write with stability, horrible pain/numbness on my left side. Every time I would go in with a "new" thing my neurologist would do a MRI which showed increased plaques in the brain. I was noticeably depressed, not because I had MS but because I couldn't do anything and the neurologist tried to tell me how good I was doing. Then we went on a trip to Disneyland and I had to use a wheelchair. Now, I know that it is dumb to feel bad about it, but somehow I felt like I had passed a threshold. For the past 2 years everyday I would say (many times a day) "is this who I am now?" or "I guess this is who I am now". (mind you I have been diagnosed since 1996 and had symptoms since 1988) Then it culminated with another bout with optic neuritis in the opposite eye than I had in 1996. Obviously the Betaseron was not holding the disease at bay. I went to the hospital to have IV prednisone for the optic neuritis. During that time I felt so great (my doctor told me not to take the Betaseron). I figured my feeling great was because of the IV. But now I believe it was because I stopped the Betaseron. After 6 days I started the Betaseron again and I felt terrible again. I could hardly get out of bed. I couldn't turn in bed with out severe pain and stiffness. I thought all of this was MS. I would try and play scrabble with my husband and couldn't sit on a chair without crying because of the pain and stiffness. I would walk and would fall and drag my feet.

Then one day I went to my GP because I had bronchitis (3rd time this year) again. I told him I was running a fever all the time. (never thinking it was the Betaseron) He asked me if I thought it could be the Betaseron? I thought...no, I got through all of that years ago. Then he asked me if I had heard of LDN. He gave me a CD with information. He said a fellow neurologist (at his office) told him about it. I really didn't believe it was anything that would help. When I started looking into it and reading about it I was amazed. These people have nothing to gain by trying to get the message out. They don't get rich off of it, they only want to help. I agonized about it because I don't want to sabotage my progress on the Betaseron. My neurologist did not want me to take the drug and wanted me to go to San Francisco to see the leading MS doctor on the West Coast. Frankly, I didn't want to do all of that again.

So I went to my GP and asked if he would prescribe the LDN and he said yes. So that is what I am doing. I can't believe the difference in my quality of life. I can move with out pain in my bed, I can sit and play scrabble, I can walk much faster than ever before. I am looking forward to the summer to see how I do with the heat. But I tell you, I can take a hot shower now and not have to sit for 45 minutes to recover.

It is my understanding on Betaseron (and the other interferons) your body can develop antibodies to the medication. Maybe that is what happened to me. But only time will tell if I have made a poor choice. I am excited to see a new MRI (probably won't be ordered for a year or so, since I just had one). But more than anything my attitude has changed. What I say now is "boy I feel so good!" and my family is so glad not to hear me complain every minute. And one more thing....these LDN people say this drug stops the progression of the disease and not just slows it. I really don't think Betaseron slowed anything, but who can tell....I can't go back and compare.

Thanks again and God bless,
P.S. Merry Christmas!

Anonymous said...


I just wanted to thank you for your blog and your thoughts, comments on MS.

Recently diagnosed with optic neuritis, this is something completely new to me and at this point MS is something I may or may not have.

Just hearing your stories and information has been helpful to me. Thank you.

Tacoma, WA