I don't speak Italian, but this post title would be more suitingly called, "Going immunita naturale", or extremely loosely translated, "going with natural immunity".
I had an appointment today with Dr. She Who Will Not Be Named. It was *supposed* to be my Tysabri follow up appointment. But, since I pretty much decided in December I wasn't going to be TAKING Tysabri any longer, the appointment segued into something else.
If you can recall (and why WOULD you recall, really?), back in December when I saw Dr. SWWNBN about the new onset of burning feet/tingling ankles, there was a question whether or not the Tysabri was holding me anyway in between infusions. And I had just had what felt like a knock down/drag out meeting with Mr. Club Med CEO and cohorts on December 5th regarding Tysabri billing costs. You remember, right? LOL
Well, anyway...I had more than enough time to do some thinking while trying desperately to satisfy my craving for OXYGEN during my respiratory illness over the past few weeks. And the conclusion I came to was this: No more Tysabri.
Here's the deal. I'm just SICK of being SICK and SICK of taking drugs that are supposed to keep me from being SICK, but generally causing me to feel SICK instead. I have been on EVERY disease modifying drug, EXCEPT Rebif and Betaseron. And I've never been on those two because they are Interferons...my reaction to Avonex (development of very high fevers and longer and longer flu-like recovery time of 3-4 days post shot) disqualified me from trying/taking those. I've "been there, done that" when it comes to current standard MS treatments (barring some of the newer experimental drugs and/or bee stings, LDN, and a few others). I'm tired of treating my MS...SICK and tired.
The cessation of Tysabri also came on the heels of cost realization...if I were to continue taking the infusions via Club Med, I would be eating away my maximum life time insurance benefits...which has already surpassed $120,000.00 of my 2 million dollar life time limit. At a little above $92,000.00 a year for the cost of the Tysabri, I would most likely exhaust my benefits BEFORE I exhausted my ability to remain gainfully employed. And that is IF I had no other catastrophic illness/event on top of the annual infusion costs! When weighing this out, the drug simply didn't/doesn't seem worth it to me at this juncture in my life. AND, Club Med has been in no hurry OR support to make any changes in this cost, which I also cannot support or condone by continuing to receive the medication. Call it a "hunger strike Tysabri style" if you will, but I just CANNOT morally justify this expense in my life. Insurance companies (I believe) are soon going to be *third tiering* (moving the medication to a 3rd tiering table, making the patient become responsible for more and more of the cost via copay) this drug anyway, pricing it right out of the market for anyone with a private insurance carrier such as myself. But THIS issue, my friends, is a MUCH larger battle than any waged by dear ol' BRAINCHEESE...and one I'm certainly not up for fighting over.
So...the current *PLAN* of action for me is inaction. Yup...nothing. No medications, barring those I use to deal with symptoms. No major disease modifying drug pulsing through my tissues. I am going "al naturale". I am giving my body a break from the SICKNESS the medications cause. "Que sera sera"...this is my new motto. Sorry to change languages on you from Italian to Spanish, but you get the drift..."whatever will be, will be"...again, very loosely translated (in spite of Doris Day's insistence in her song that this is the literal translation!).
I WAS successful in getting the radiologist's interpretation of my cervical/thoracic spine MRI in December...Ooooo...not so good. NOT MS-wise...just not so good structural-wise. It appears (and I quote) "...moderate to moderately severe, multilevel mid cervical degenerative disk disease...subtle, T2 hyperintense, nonenhancing area in the right cord at superior to mid C4..." Basically (and loosely interpreted in English...I just KEEP switching up languages here. LOL), this says my neck IS falling apart from structural disease, but my cervical lesion is NOT getting any worse and actually looks BETTER than it did 5 years ago when first discovered. Of course, Dr. SWWNBN had to point out, "you neck looks like $#!+"...but, short of surgical intervention (which I am NOT doing, thank you very much), there is little that can be done, other than treating symptoms the structural changes cause. Which, in my case, is MAINLY PAIN! Duh...like I needed a seven thousand dollar MRI to tell me THAT?!?
So, here we go kids...keep your hands in the moving car at all times and no standing until this ride comes to a complete stop. The BRAINCHEESE world is about to go *rogue*...I haven't been off MS meds in so long, I'm not sure my body will know what to DO with itself for the first few weeks. Oh, sure...there was a 3 month wash out period here and there in between medications, but nothing long term. I'm actually excited about the prospect of NOT having to schedule my life around shots or infusions or SICKNESS or...
Let the ride begin!...