It's all about the blood flow (and Benjamins) baby!

Whew. Happy 2019! Made it!

Apologies for the radio silence.

As we start 2019, I am definitely reflecting on what a WILD year 2018 was.

I made a photo calendar for the girl’s grandparents and aunts/uncles as Christmas presents, there were A LOT of fun times.

However, the past few months have been the darkest in my life. 

To lay it all out there, God met me at the bottom (even though I was SUPER angry and scared), lifted me from my despair to be apart of His plan/purpose for my life. 

This will probably sound as cheesy reading it as it does typing but, I wouldn’t change that for anything.

Turning Big Ben back (like they do in Mary Poppins Returns) to follow-up from my last post……

After finishing five days of the IV steroids and the ED visit,  I requested to see my neurologist to review what had happened (since I had ONLY communicated with residents during the entire episode, other than the hospital attending neurologist I saw in the ED).

We discussed starting Tysabri or Copaxone. He really only recommended Copaxone after I was hesitating about Tysabri because we had been trying to have a 3rd baby……

The first medication (Tysabri) is an infusion every 28 days that requires liver function testing every 6 weeks, multiple side effects as well as the possibility of “potentially fatal” progressive multifocal leukoencephalopathy (PML). Prior to starting this medication one needs to be checked for having antibodies to the John Cunnigham (JC) virus. 

Tysabri article (this is one from Direct-MS a great website with LOTS of resources on non-mainstream MS stuff)

Wait, wait, what? I’ll give you time to read that again.

If that doesn’t make your stomach turn, once you start this medication, one has to be on it FOREVER or another medication has to be started immediately upon stopping or there is a severe “rebound” effect. 

I just threw up in my mouth a little.

Seriously?

Copaxone on the other hand is a daily injection that has been around for many years. I had mentioned we had been trying for a third child so he said I could get pregnant on this medication (which is NOT recommended by the drug company. They don’t test pregnant women on the medication or report any outcomes of babies dying while the mom is on this medication, so that’s helpful).

These are my options? 

And still, NO ONE (physician, resident or attending) could really explain to me WHY or HOW the blood brain barrier (BBB) becomes “breached” to allow the “attackers” to begin breaking down the myelin. As well as correlate my current symptoms with my “flare/new lesions”. 

Hmmmmmmmm

I’m on a soapbox already, but I guess that’s the glory of a “blog post”. I’m allowed (until the post goes against social media guidelines, like what happened with my first post, and it gets taken down).

I told my neurologist that I was NOT trying to be obstinate or contrary, that I was very aware that extremely bright people have created medications that do something to mediate the disease process in some way, but that I was really just trying to understand better and had an underlying “negative” feeling about medication that I couldn’t put a finger on.

He still didn’t really have anything to “appease” me.

I signed some paperwork agreeing that I understood the risks, talked about the risks with him and when my test results (from the virus labs) were finalized, I could call and let him know which medication I wanted to start.

Well, I nearly escaped that route of disaster.

Now don’t misinterpret. I know I am coming across as VERY negative about the medication route. However, I honestly believe that in 150 years of studying Multiple Sclerosis, there HAD to be some more answers to my questions.

During the “waiting game” for the lab tests to be finalized, an acquaintance recommended  a movie she had watched called “Living Proof”, directed by Matt Embry (watch on Amazon Prime or here). Also check out Matt's website MS Hope. After a week or so, I finally watched Living Proof and it CHANGED. MY. LIFE.

PLEASE, PLEASE check it out. ESPECIALLY if you have MS yourself, love someone or even know someone who has MS!!! 

I’m serious. It’s a very well done film. 

Aside from the diet and exercise changes, he (and his dad, Ashton Embry, a geologist, also started Direct-MS website with his wife after his son's diagnosis; have i recommended Living Proof yet?) found out about chronic cerebrospinal vascular insufficiency (CCSVI) in 2007-ish.

When you watch the movie, the history of it all is well explained, but it basically boils down to deoxygenated blood (with toxins and other molecules) getting “stuck” (as well as “pushed”) in the brain (as well as cervical/thoracic [chest] spine) significantly affecting individuals with MS(citations of many of these papers to come).

Near the end of September, I underwent a Ultrasound per the Zamboni protocol (seriously, watch Living Proof ASAP).

Monday December 3^rd, 2018, I underwent a ballooning of my azygos and bilateral internal jugular veins in Dayton, Ohio, USA (the only facility in the US that has an FDA approved protocol for the treatment of CCSVI). 

Hence, the title of my post. (It's all about the Blood Flow). Additionally, as mentioned in our annual Christmas letter, Here, FOLLOW THE MONEY (and the benjamins baby)!!!!!! Things become obvious very quickly when you search for it.

My dissertation (including paper citations) discussing my IMMEDIATE (as well as delayed) improvement plus some more background about CCSVI will be my next blog post (this post was already OVERDUE and LONG).

Stay tuned!

As always, thanks for reading!

IronTina