Monday, August 1, 2016

Getting a Grip on Multiple Sclerosis

So another year is more than halfway gone and I am beginning to finally get a grip on this thing called “Multiple Sclerosis.” It is a disease that takes up much of my brain space, figuratively speaking. Since there are various forms of the disease it can make people a bit uncomfortable. No doubt, a person of faith will always have those around them who will say, “Just trust God” or the classic, “God won’t give you more than you can handle.” Yes…yes he will and though I could reinvent the wheel, I will share this link with you regarding that thought: Click here

With that said, this disease does cause me to worry and it is hard not to let my mind wander at times. Thankfully, I have some answers regarding my diagnosis. After one of my least favorite lab tests (spinal tap) and seeing the results, I have the most common form of Multiple Sclerosis which is “Relapsing-Remitting Multiple Sclerosis” (RRMS) According to the National Multiple Sclerosis Society, the definition of RRMS is that it is “The most common disease course – [and] is characterized by clearly defined attacks of new or increasing neurologic symptoms. These attacks – also called relapses or exacerbations – are followed by periods of partial or complete recovery (remissions). During remissions, all symptoms may disappear, or some symptoms may continue and become permanent. However, there is no apparent progression of the disease during the periods of remission. At different points in time, RRMS can be further characterized as either active (with relapses and/or evidence of new MRI activity) or not active, as well as worsening (a confirmed increase in disability over a specified period of time following a relapse) or not worsening.”

So, there’s the update. On August 9th I go in for one more dye-injected MRI to see if any new lesions have formed. Of course I am staying positive and full of hope and faith but there comes a peace with knowing what you are dealing with so you know how to proceed. As always I appreciate your prayers. 

1 comment:

  1. Fellow MS person but have primary progressive, still no treatment yet. Hope that your MRI went extraordinarily well. Many RRMS Meds available, plus many people follow all types of diets from Terry Wahls palio, to Ashton Embry's Best Bet, to a wide variety of others that are say gluten-free or dairy free and many feel that it helps them. I haven't tried anything really special yet but try to eat fruit and veggies and have been veg for decades. Research out of Cornell and Harvard and Oregon State seems to link bacteria in the large intestine with neurological issues it's not out there far-fetched anymore, although it does sound a bit strange. There is a Facebook group: Christians with MS, I think maybe more than one. Check-out what used to be Stus Views and MS news, now MS views and news. There are just a ton of internet sites with excellent information. Check out Marc Stecker and the Wheelchair Kamikaze. He writes an excellent blog, both funny and poignant, but is currently on hiatus. He uses voice-activated software as he can no longer type. Found you from Jason DaSilva's site. He did an excellent film "When I walk," which won an Emmy last fall. There's a group about Hematopietic stem cells on Facebook as well, ( no chemo no cure they say) and Dr. Richard Burt at Northwestern University continues to do clinical trials in the U.S. Others raise money and flock to Russia, Mexico or Israel. I have just joined the high-dose biotin train for progressive MS hoping it will help. It is not a fun disease, as I'm sure you are aware, but at least you do have some treatment options up to and including Tysabri even. Tysabri has been a miracle drug for some people. HSCT will most likely go mainstream in the next five to ten years plus. Am spirit filled too, but realize there are many MS atheists as well. Wishing you the best in your treatment choices. Many people feel that trying to be as active as you are able to is very helpful as well, including Physical Therapy if needed. I need to get back on that train. There is a website out of Rutgers University in New Jersey called care cure for spinal cord injury but MS patients are allowed to join. Finally the University of Wisconsin at Madison, neurosciences and biomedical engineering departments I believe is set to release the neuromodulator thing that goes on your tongue and it is supposed to help people with their Mobility. I believe it is called the Pons. Hoping that the FDA will approve it in 2017.