This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.
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So by now I am sure most of you have heard that news. Two more people have been confirmed to have PML after taking Tysabri. First off I want to say that my thoughts and prayers are with these two MS'er and their families, that they have a full recovery! According to the article I read that makes for a total of five. I have always been very cautious about Tysabri because of this particular side effect, but I also am aware that my risk is higher than the typical MS patient because of my history of having had cancer. For this reason my doctor does not want me to take Tysabri and I actually believe I would not qualify for it under the regulation program the FDA has set up for those on Tysabri. As I read the report though I started to wonder why this seems to be such a big deal, such a let down for the MS community when someone is diagnosed with PML. Of course I feel bad for the MS patients who develop this horrible illness as a result, but with over 31,000 people taking the medication and 5 people who have gotten PML, is it really that big of a worry? Of course it should be monitored and from what I have read it is being a matter of fact, these last two cases were caught early because of the program in place.

I guess what I am getting at is every medication we take whether for MS, diabetes, asthma, cancer, or something else has some type of side effect possible. Have you heard the drug ads? Sometimes I think the possible side effects last longer than the actual commercial. There seems to be risk with everything and based on our personal make-up and other health issues it really comes down to do the risks outweigh the benefits? I also read on Dave's blog that the company is worried about their stocks plummeting. Well, that is just crap if you ask me. Stocks do go up and down and although I understand the importance because I was a business major, the reality is how this effects all of the people who have MS and are currently on or may benefit from Tysabri should be the primary focus!

Something I learned today from one of my docs in Seattle however is that one of the reasons Tysabri has been so important to the MS community is because it acts differently. It helps to repair the brain blood barrier and that is a key part of MS that is not always discussed. What I found out however is there is a natural supplement that I can take that has been shown to do the same type of thing only with the possible side effects. Alpha Lipoic Acid! It is not only good for those of us with MS but for anyone with Diabetes. It is known for helping to lower blood glucose levels and if you happen to be anything like me when it comes to MS and heat (can't function much above about 75`) then this is supposed to help with that too! My doc over in Seattle wants me to start on this as soon as possible and then see how I am doing when I see her on Sept. 9th. Needless to say I will be heading to the supplement store later this evening. My appointment today was a phone consult as I am still helping out with my grandma, who is doing better! That and continue on a path to being 100% wheat free...those were her instructions.

I hope all of you are happy, your MS is in check, and that August is treating you well. Take care!


Denver Refashionista said...

Good attitude. It sounds like things are looking up. I think my mother mentioned the spplement you did. I'll check it out.

Diane J Standiford said...

I'm going to try that supplement. My Seattle MS doc (she)(there are only 3) never suggests anything natural---don't think docs like my questioning attitude, poor things. I think the thing about Tysabri is death is a pretty significant side effect, that is not the usual side effect of a drug that is not a cure, like surgery is. We accept it with surgery, but a drug that "may" "slow progression" well, harder to swallow, though many will still take it. Personally, the MSers I know who went on it have either gone off or after the excited high of potential wore off, so did the feeling that it "changed their life. Th first exacerbation and people want another drug. That would drive me crazy. But, to each his/her own.

Blinders Off said...


You hit the nail on the head with this post. I rather take my chances on natural supplement than a man made prescription. My husband has a co-worker who has MS who has been taking a supplement called Noni Juice for two years and she is doing very well on it. I am thinking about trying it, but I am going to research what you mentioned and make a decision between the two. Thanks for the info.

Jim Gerl said...


I wanted to call your attention, and that of your readers to my special education law blog at

Also I voted for your excellent blog for the Bloggers Choice Awards.
Could you return the favor at:



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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my life with MS (among other things).

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