Is It A Little Warm In Here?

When I was in the audio business I went to a LOT of trade shows. At one company I worked at we had a slew of rep firms that sold our products across the nation into music and pro audio stores. These warriors obviously attended all the same trade shows as me, which were scattered throughout the year all over the country.

Although it might be hard to fathom, I was a pretty irreverent little punk back then (as were all my co-workers ~ but damn we certainly were witty and clever). We had this one guy who had a firm based in Minnesota. No matter where we were, or what time of year, or what time of day, he would always come running into our booth sweating profusely and saying, “Is it a little warm in here?”. Mercy, we made a lot of fun at the expense of that poor guy. Apparently I took the communal comeuppance and was chosen to pay the group sins by getting MS, whose worst enemy is heat.

Back in the day (so I’ve heard), if you you were suspected of having MS, you’d be thrown into a tub of hot water. If all symptoms got worse, then there you’d go. MS. I’m not sure if that’s true or not, but suffice it to say I haven’t had a hot bath in years.

Now add an equation of MS, medications, menopause and living in Southern California and you’ve got one noodly challenge to standing or walking. On top of this, I can’t stand air conditioning. All that fake cold air blowing over my neck, head and body – yuck. Consequently, I tend to be one big Gumbyesque mess come summer. And of course this being Southern California, it always feels like summer.

This new treatment that I’m about to embark on (the goal of which is to stop progression), has offered some other Lemmies (evidently the Lemtrada “in crowd” gang moniker) relief from the heat as time has gone on. This would be a big bonus for me! Geez, I’ve become a gray haired, over weight, over heated grumpy old lady with a walker now. I’m so totally ready to be cool again! : -)

hot

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.