Hakuna Lemtrada!

Multiple Sclerosis is for the birds. No big news, that. What is big news are the many treatments that good ol’ Western medicine has been cooking up in the past decades since I was first diagnosed.

I’ve tried several of them ~ Copaxone, Tecfidera, Gilenya ~ and with the exception of Copaxone, I haven’t been too impressed. So it is with skeptical delight that I’ve decided to give another one a try. It’s called Lemtrada. This one basically annihilates the immune system then let’s your body regenerate it without the “memory” of MS. Sweet!

Downsides? Minor. Risk of cancer, thyroid problems, thrush, vomiting, rashes, death. You know, just about anything awful. But what the hell, death is the outcome regardless for us all, and despite that it seems extreme and in another decade it will probably seem as obsolete as using leeches to clean wounds, I’m giving it a go.

I know, I’m being glib (also no big news). Quite honestly I’m terrified. How can I not be? I’ve always thought going under the knife for any kind of elective procedure was risky, vain, unnecessary and actually stupid. Instead, I’m opting to voluntarily obliterate my immune system. Genious!

As expected, my incredibly wonderful and supportive family are lining up to take turns caring for me. My sister is coming from Seattle for the week of infusions (6-8 hours per day for 5 days), my brother is coming down from Northern California to take his stint and cook for me and keep me amused, then Liza comes from Colorado for a week to keep me company and shore me up. And of course, Anna is here the whole time being my rock.

As fucking freaked out as I truly am, when Liza was leaving from her visit last week I told her next time I see her, I won’t have MS! I don’t think that’s exactly true, but it certainly is a fantastic motivator!

I’m nervous and excited and expecting quite the journey. If this can stop MS in it’s tracks (and quite possibly allow my body to regain some ability back), I’m a thrilled and happy camper. Count on my brother to coin the phrase “Hakuna Lemtrada” which I”m hoping proves true…”it means no worries for the rest of your days…”!





Phase 2

I filed all the paperwork myself for the second round of SSD as I mentioned before. I’ve been feeling confident and a little smug because I finally got the info from Dr. S who has been my primary MS doctor for 11 years and truly knows the course of my condition. He sent about 30 pages of back up to go along with his initial letter supporting my claim, so I’m thinking YES! No problem from here.

I thought it might be a good plan to read this medical tome that he had sent along detailing the progression of my MS over the last 11 years. It was not. Denial has been a key component in my personal MS treatment, and this sent a bit of a shock wave through the old denial pond.

It seems I have turned a corner. For the past 10 years I have been chronicled and duly noted as fine, stable, optimistic, slightly overweight (not by Dr S. but by a 2nd opinion man ~ bastard!), strong, and with all kinds of messy medical notated bits regarding the old spinal column and brain.

Somewhere mid 2010, the notes start to suggest some progression (finally some good news!) from primary-progressive MS to secondary-progressive (Oh. Shit. Not a good kind of progression at all). You are no doubt asking the same question I did: Well, what’s the difference?

According to my #1 go to resource the National MS Society (www.nmss.org):

The name for this disease course comes from the fact that it follows after the relapsing-remitting course. Of the 85% of people who are initially diagnosed with relapsing-remitting MS (RRMS), most will eventually transition to SPMS, which means that the disease will begin to progress more steadily (although not necessarily more quickly), with or without any relapses(also called attacks or exacerbations).

Well isn’t that special. Additionally, I found a hidden gem stating that based on the level of my demyelination, it’s amazing that I get along as well as I do. Another question as to what that means:

Multiple sclerosis (MS) is an autoimmune disease that affects the brain and spinal cord.  In MS, the body’s white blood cells attack tissue called myelin sheath.  Myelin sheaths are the protective covering for nerve fibers in the brain.  Much like an electric wire is insulated with rubber or plastic, the myelin sheaths cover nerve fibers as they transmit nerve impulses within the brain.

When a myelin sheath is worn down or destroyed, the process is called demyelination. Demyelination causes the nerve fiber to be exposed.  The exposed nerve fiber is less able to transmit nerve impulses.  As a result, messages between different parts of the body are not transmitted as effectively. After the myelin is destroyed, scar tissue called sclerosis is left behind in the damaged areas, which are referred to as lesions or plaques.

Lots of demyelination = lots of of scar tissue called sclerosis = multiple sclerosis!

Damn! I should have kept my Nosy-Parker-Gladys-Kravitz self out of those notes. In reality though, it doesn’t really make much difference to me. Some days are better than others. Some days I feel – Oh! so demyelinized! Some days I feel OK. The pictures show my nerves looking like stars, that I can see reflected off the surface of my day to day life. One sclerosis at a time.