Step right up, get your tickets to some GOOD NEWS...

Today, my MRIs (all 1.5 hours of them, complete with an IV full of gadolinium dye) showed the following:

• All previously active lesions are now officially inactive (yay)
• All previously "questionable" lesions are no longer present (yay)
• I have no new active lesions (yay)

Blood tests will confirm that my body has adjusted well to the Tecfidera; I will have those results by the weekend. Previous tests when I wasn't feeling as good as I am now showed my liver was metabolizing the medication just fine, so it's a safe assumption that my liver is still functioning well and I will be able to continue to use this new oral med, as it seems to be working for me. The manufacturer has proven to the FDA that it is safe to use 4 years out, so I'm feeling great that I might NEVER have to go the route of injectible medications with side effects. 

I will get a neuropsychological screening done this summer to establish a cognitive deficit baseline, and I will review my arthritis and carpal tunnel issues in both wrists also this summer to see if I still need surgery. I will also have my left big toe checked for arthritis or gout and move forward accordingly. 

I also have permission to double my wakefulness medication (modafinil) if I should get hit by a period of super fatigue (like I had last April, which caused me to miss both MS walks I had signed up for, in fact). 

I'm psyched to hear this news, of course, and it means I can let my energy levels shift away from concerns about disease progression so that I may invest more of my focus/attention on my work in the sleep medicine field. I've discovered that the more I work and the more I involve myself in other intellectual pursuits like writing, which don't shine a glaring light on my MS, the less I am stressed by it and if I'm having symptoms, they are barely noticeable if they are present at all. 

And that's what I'm going to leave you with, dear reader, as a closing bit: the less you examine your illness, the less it seems to bite back. I know I am lucky in that I have a mild form of MS which is not physically apparent to people around me, and I know that others with major mobility issues will be challenged to NOT always be thinking about their illness, because being out of balance or lacking movement in an arm or the sight in one eye can be terribly present... but in the end, we still can choose where to focus our attention, and if it's toward things that are life-affirming, positive, and helpful in some way to the community, then how can that NOT be a better approach? 

Thanks to everyone in my life--family, friends, doctors, nurses, technicians, pharmacists, insurance payors, MS cohorts--for buoying me up through this challenging year. And thanks, to, to Biogen Idec, which manufactures Tecfidera. I have been hearing all kinds of good news from my peers who started "Tec" before I did; I am so pleased to be part of the good news community now! 

One year MRIs TOMORROW...

About an hour and a half in the White Tube of Death (WTD) means I'll be taking a lil' somethin' something'...

We will be looking for the following in my films:

• Lesions that used to be active but are now smaller and/or inactive (yay)
• Previous "questionable" lesions which are now smaller and/or inactive (yay)
• New active lesions (boo)
• Old lesions that are STILL active and the same size or possibly larger (boo)
• Previous "questionable" lesions which are larger and/or active (boo)

This will require contrast dye which explains the long time spent in the WTD and which feels, as my friend ES accurately described to me last night, as if you are a carry-on suitcase jammed into the luggage compartment of an airplane.

If I get more yays than boos, then I'll chalk it up to my disease modifying therapy (Tecfidera) working for me (hey, I've adjusted to it--the least it can do is work for me, right?) and overall good management of my disease course through healthy lifestyle (stress management, good sleep habits, nutrition supplements, primarily).

If I get more boos than yays, we might have to go back to the drawing board on the DMD to see what else might work.

But I feel pretty good these days and expect the former, not the latter, to occur. I reallyreallyreally hope I don't have to change pharmaceutical course because that will probably mean going from oral meds to injectables and that's not really in my plans...

Wish me luck!

National MS Awareness Month || The Four Faces of MS

Eight-five percent of all MSers have what is known as Relapsing Remitting Multiple Sclerosis (RRMS). What this means is that it is characterized by a waxing and waning of symptomology. Those with RRMS talk about having flare ups or episodes or attacks or exacerbations, which may or may not be evidence of disease progression. Between these periods of relapse, there are relatively calm periods of remission.

These periods are mostly easy to get through, but certain ongoing symptoms can still crop up as part of that person's "new normal" as defined by where their MS has taken hold in their central nervous system. My lesions, for instance, are near the hypothalamus and the frontal lobe, so even during remissions (which is where I am right now), I still have problems with thermoregulation (because of crossed signals in my hypothalamus), fatigue and cognitive function (because my frontal lobe signals are challenged by the lesions there). These are markers of my new normal and I will probably always have these symptoms even when I'm feeling great otherwise.

For those with RRMS with lesions which impact mobility, they may still have some issues using a foot or a hand because that is where their lesions reside, but they might get around a bit better when not in relapse mode.

However, there are some other, lesser known forms of MS which are more rare than RRMS and more antagonistic as well.

Secondary-progressive MS (SPMS) occurs for a very small number of people who, after having a relapse, continue to progressively worsen. There is no remission period between attacks. There's no way to predict whether someone encountering an MS relapse will suddenly progress to SPMS. Those with RRMS often quietly fear this will be their reality (myself included). The threat of a permanent downturn is scary indeed.

Primary-progressive MS (PPMS) is a even rarer form of MS in which the person experiences a slow, steady worsening of MS from its onset, with no distinct periods of relapse or remission. They are more or less living a life of steady relapse from day one and often cannot recover.

To confuse the issue, there is also a variety known as Progressive-Relapsing MS (PRMS): This is the least common of all the MS types and is distinguished by a steady progression in disability, usually revolving around the use of the legs and walking. People with PRMS initially appear to have PPMS.

Remember, there is no cure for any version of MS. It's also important to highlight these variations of MS because ALL of the current medications out there designed to treat MS are for RRMS. None of them can help those who suffer from SPMS, PPMS or PRMS. This is where the research deficit is greatest; right now the emphasis is on finding disease modifying treatments for the majority of sufferers (RRMS) but that means little money, effort, focus and time can be dedicated to these rarer forms. I'm hopeful that newer treatments for RRMS will be successful over time (we still have to test them on large populations over time), so that research can then turn their money, efforts, time and focus to understanding the other forms, so these people can get some relief as well.

National MS Awareness Month || Welcome to MS: Here's a map, but don't expect to know where you're headed

Here's an interesting graphic I found which shows how progression (from the left) can potentially lead to the ultimate disabling symptom of MS: death.

It's a complicated map for sure, of what could be waiting for anyone with MS. Aye, there's the rub, the words "could be." You see, there's no certainty that the progression diagrammed here will lead anyone to that fatal end game on the right, nor is there any certainty that they won't. All of us MSers are doing everything we can imagine or accept to halt the progression of this disease, but just take a look at all the side trips we may or may not have to endure along the way. This is part of the madness that comes of having MS, the not knowing from one day to the next how we're going to wake up. Functional? Foggy? Falling down? How far can any of us plan in advance? Or maybe the question really should be, how gifted must we be in graciously backing out of commitments and obligations? Because of all the other things that are uncertain, there's one thing for sure: all the best laid plans o' mice and men are not going to matter one iota if we wake up one day unable to move, to see or to think.

I consider myself fortunate, somewhere stuck in transit between the minimal and moderate impairment tracks, as I have tremor, bowel, fatigue and cognition issues, but mostly I'm focused on managing my symptoms at work, refining relationships with those in my support systems, and working with my DMTs to prevent future relapses. It's pretty much all I can do to keep up with my roles as mother, wife, daughter and employee while trying to outlast the war inside my body. Still, I'm nowhere close to the right side of the MS subway map. Now there's a bright side!