About Ms Lab Rat

surprise smallI’d started this blog while I was taking monthly trips to the NIH (National Institutes of Health) for an experimental MS (multiple sclerosis) medication, which would be released in May of 2016 under the name Zinbryta. I’d expected this drug would change the lives of thousands of people like me who have had no luck with prior FDA approved drugs. Instead, a black box warning scared people away, and ultimately the drug was pulled from the market in March of 2018. Instead of being a blog about this drug, I guess it’s just a blog about me. I continue experimenting with new ways to tame my hyperactive immune system without any MS medication, as none of the drugs currently on the market are effective for people over 50.

My MS started off very aggressive, and proved resistant to all FDA approved medications then available. Because my disease was too dangerous to not treat, I took an off-label risk on a treatment to keep the immune system from rejecting organ transplants. My other alternative, I kid you not, was bone marrow transplant.  In 2010, I learned that all the supplies of the off-label drug were being hoarded by the NIH. Apparently the chief investigator of the NIH study was the same neurologist I’d coaxed into prescribing me the drug four years previously. Happily, she invited me to visit the NIH (free of charge) to see if I would qualify to participate in the trial. The rest is history. I’ve been involved in clinical trials of potential MS drugs, (and MS diets, and MS diagnostic apps) ever since.

As I update this bio, people all over the planet are trying to figure out how to cope with Covid-19, and are going through the same grieving process I began on the day I got my MS diagnosis. I seem to be stuck in the bargaining stage of grieving, and cope with autoimmune disease by continually looking for the next healing strategy.

My advice to anyone diagnosed with MS, or any other scary sounding disease: don’t give up. Don’t give in to fear. Don’t accept negativity. Keep asking questions. If you don’t like the answers, keep looking for someone smarter to ask. Above all, keep moving. I wish you good health!

Where's Your ID?

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

3 thoughts on “About Ms Lab Rat

  1. Yah treadmill session complete….. I would love to hear more about your ms journey. I am way more a phone, facebook, or skype person though. I think I figured out how to follow your blog and will definitely “be around”, So glad to have found you!! If you have any time or interest…add me on facebook grace fullnot, same orange ( for ms awareness) 3d printed rose for the picture

Leave a Reply to msgracefulnot Cancel reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s