Category Archives: MS Diary

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Not to put too fine a point on it…say I’m the only bee in your bonnet.

Nothing like They Might Be Giants to refer to that which is unclarifiable. This self assessment has been such a struggle for me. I like it to be a bit more concise. A bug bit me. There is the spot. It itches. I’m limping because I have MS and sometimes when I walk too far that happens. I’m dizzy. Can’t tell you exactly when or why or if I’m better. I’m just dizzy. Sometimes more than others. Every morning I seem to be on a reset as I wake up very dizzy. Although at some point today I was able to look up with out feeling like I wanted to topple. So thats an improvement.

I’m currently using my freetime (on the train) to asses the instructional design of the proposed
symposium for the NYC chapter of the MS Society. It’s been an incredible process. Just putting my mind in the instructional designer role is such a creative outlet. While i’m thinking of how to add to this existing project, a million other ideas are coming to me about mssoftserve. The creative engine is tremendous. By merely engaging… it begets more and more. I hope there will come a time that I can dedicate all of my creative energy to these learning sites.

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a dizzy affair

I have been trying to write an entry for over a week now. (and here is my traditional disclaimer– If you would rather not learn about symptoms that you may never experience…stop here.) I literally have seven drafts written that I haven’t published. This vertiginous experience has been trying…to say the least. I suppose that any of the sensory MS symptoms affect us on a different level, an additional level. How we sense the world around us invariably inpacts how we feel emotionally about the world and our place in it. Maybe this is why I can’t seem to find to words to ground me. I keep searching for coping mechanisms and none seem to work. I guess I will just have to ride this storm out.

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Vestibular MS- “How are you?”

I haven’t posted the warning to say that “if you aren’t interested in reading about symptoms you may never experience” in some time. So let me do that now. Consider yourself well advised and proceed deliberately if you so desire.

I’m at day 5 of level 7 dizziness.. and I continue to struggle with how to establish my coping mechanism. Something about giving it a numeric value helps a bit. It’s so ethereal and that makes it difficult to convey…assigning numbers helps to ground it all- if you will. Not unlike Hurricanes..those whirling winds that can only be effectively communicated to the massess by their 1-5 categories. Any sense of control will do. I even believe that since I began the process this internal storm has been downgraded to a number 6 down from 7.

This all began back in December last year and after the steroid infusion I was patiently waiting for relief that was slow to come. But it did, sort of. Once this whole dizziness thing began it was hard to determine the progress… or progression. Partly because the experience with it was so variable.

One of the challenges of invisible MS is how to respond to the daily queries of concerned individuals. “How are you.” I”m fine. Really? No, not really… but how I define fine changes on a daily basis. And what is the point of saying “still dizzy” ? What if dizzy is my new norm?

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Dizzy Defined

Here is the Roget’s entry for variations on a dizzy

  Roget’s New Millennium™ Thesaurus – Cite This Source – Share This
Main Entry: dizzy
Part of Speech: adjective
Definition: Having a sensation of whirling or falling.
Synonyms: giddy, lightheaded, reeling, vertiginous, woozy
Source: Roget’s II: The New Thesaurus, Third Edition
by the Editors of the American Heritage® Dictionary.
Copyright © 2003, 1995 by Houghton Mifflin Harcourt Publishing Company.
Published by Houghton Mifflin Harcourt Publishing Company. All rights reserve

I love the words… for me they are onomatopoeia. Don’t the words themselves sound like what they are describing? giiiiidyyyyy, reeeeeeling, wooooooozy. Not so much with vertiginous but actually saying it makes one feel a bit dizzy! Or maybe it is just me. I am seeing the world through a dizzy lens at the moment.

I woke up this morning and found myself feeling, let’s say- vertiginous. The kind of dizziness that every time you move the world rotation is kicking the movement up an extra notch. Not ideal for the NYC commuter experience that usually starts my day.

I spent a good twenty minutes sitting there trying to evaluate my level of dizziness. How can I determine whether it is safe to go to work or not. I decided I need to chart this out, to make a litmus test not unlike the standard neurological exam. With points and numbers… and depending on my score… I will make the decision to work, or not to work. To commute or not to commute.

Maybe when I’m through I will find other significant uses for the test,…say to determine what to eat for lunch and other indecisive moments. Something tells me this will be very useful.

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Magnetic Resonance Imaging…and other false hopes.

Back in 1988 when I had my first MRI, I experienced up close what was, at the time, high-tech. I lay in a very small tunnel housed in a large square magnet and “relaxed” for 90 minutes while I listen to the banging, clanging and other loud noises that would produce images of my brain. The films that I carried in a big yellow envelope to my newly assigned neurologist had the evidence of what was to become my new identity. Multiple Sclerosis. Stamped on my forehead before I had even determined what kind of adult I might become.

Twenty years later the technology has improved. The open air, musical soundtrack, and audio link to the technicians outside- all created an environment that was more conducive to a relaxing experience. Yet I’m not sure I see the point of what is my 7th MRI.

I was diagnosed quicker than most people I’ve met. My symptoms were classic and with the MRIs in hand- my spotty myelin made it a no-brainer (if you will). I celebrate the technology that made the discussions of psychosomatic symptoms short-lived.

But ever since that initial experience, MRIs have only served to confuse me. It was a few years ago that I was told that there may be scars that have no related symptoms and symptoms that have no related scars. (that would explain the vague mri observations of my neurologists over the years~) Okay then. What do I do with the results? If my MRI comes back with a number of new “activity” spots and I have no new symptoms should I worry? Or if I have a wealth of new symptoms that aren’t showing up on film…should I be annoyed? I’m coping with the symptom..shouldn’t there be something to show for it? What is the point of this test if nothing on it has any significance? Why do I get excited with every one that there might be a new interpretation? I keep that hope alive- Maybe they’ll find the holy grail this time!

I just recently went through an episode (see Vestibular- and other highlights of my growing vocabulary) and I anxiously awaited the results in hope that is would provide insight and then ultimately a treatment for my dizziness and impaired balance. I’m not sure why. I suppose that is the nature of my unfailing optimism. Maybe this time they will see something. But they didn’t. They answer my question as if it is the first time I’ve heard it. There is nothing we can do for this symptom. There is no new information that the MRI is providing.

ie: Add it to your list of things you can cope with.

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Sometimes

It seems like life is moving in slow motion.

Not because the activity has died down. In fact the opposite is true.

Or because I can’t move as quickly as some. There are moments in a given day, during a given commute, when I might even be called rapid.

This motion refers to something else that is happening underneath the activity in a day. In my day.

It’s the timecode. It’s the white noise. It’s the silent optical soundtrack.

It’s all the the things that I wish I could be working on,

the significant, meaningful things – that are cast aside – for the day-to-day diurnal noise.

 

 

I feel much better thank you.

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MS SoftServe and other distractions.

The progress of MS SoftServe is slow and steady.

As I work towards the immediate goal of editing the interview footage that will support an explanation of the site, I am seeking the balance. It’s a balance many struggle with. Full time employment (administrative staff at NYU-Tisch Film and TV), home life with my husband ( a photography professor and artist) my 6.55 year old daughter in first grade; a welcome distraction with homework, games, violin, conversation, reading and must see movies. (Horton Hears a Who ) Oh yeah, and a certain amount of maintenance :). And of course Multiple Sclerosis, something most of the people reading here can relate to, throwing in a new challenge on a daily basis.

Yet secretly, behind the scenes I’m editing and writing and planning. Sometimes it’s not in a tangible way; sometimes its progress that is only evident on a neuron-ic level. Keeping company with my myelin, or in some cases a lack there of :), it is progress that I can be excited about.

On a more obvious level I am working to start my consulting business SoftServe Central- Educational Concepts in Online Learning. Using my expertise in instructional design combined with almost 20 years of MS (come June 2008) I consult on how to design ideal education for those of us with this label, this lot in life. How to speak to us, the patients in a way that recognizes what our experience is and that we are unique individuals in spite of a common diagnosis. To explain how to connect with each of us with our individual version of this disease without alienating any one of us.

I’m also in the final stages of developing a non-profit organization called SoftServe Matters (grey matter, white matter, your funding matters!) whose mission is to create educational websites for individuals who need to learn about any disease in a customizable, reduced anxiety way.

Then there is my blog and the greater world of MS bloggers. I would love to sit all day and read and write. I want to tell the bloggers I’ve read (and continue to read) how significant what they are saying to is to the MS world and the greater world of people who also happen to be patients. I want to connect to more people, who like me and many who I have met, struggle to learn about their constantly evolving unique version of MS at a safe place that to be confident we aren’t going to learn about things that aren’t relevant to us; facts that will cause anxiety about our uncertain future. (I want to edit that last run on!)

I want to work on MS SoftServe, a solution that is waiting patiently for funding

I have to keep this hope and desire quiet while the rest of my life happens. I need to find balance. Don’t we all.

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Vestibular- and other highlights of my growing vocabulary

Far be it for me to explore the uncharted grounds that google exposes one to (see MS SoftServe) but in this case I wanted to get more info about this vestibular test so that I can be more specific in this entry. It’s always interesting to read the variations of phrases that describe what MS is… of course how it reads depends on the specific slant…the angle. The one that turned up in this search contains some jewels.

Multiple sclerosis

Multiple sclerosis is a disorder of recurrent, inflammatory CNS demyelination due to underlying autoimmune disorder. The onset is usually at 20-40 years of age. Episodes begin over hours to a few days and last weeks to months. Typical symptoms include optic neuritis, ocular motor dysfunction, trigeminal neuralgia, sensorimotor deficits, myelopathy, ataxia, and bladder dysfunction. Vertigo, at times mimicking vestibular neuronitis, is a presenting symptom in less than 10% of patients. Dizziness or vertigo occurs at some point in the course in a third of patients. Few patients present with hearing loss due to brainstem involvement.

(I enjoy reading more scientific descriptions of the disease. I’m not sure if it is the high-level vocabulary or the lack of drama. I like that “trigeminal neuralgia, sensorimotor deficits, myelopathy, ataxia” Those are great words )

So I went for the test that would determine if my balance and dizziness issues are my MS, or not. (once and for all?) I was warned that it was likely to leave me dizzy and nauseas- so I made sure to bring my mom along to provide an escort home through NYC commuter subway traffic. We had no idea what to expect, and could never have dreamed up the elaborate reality of what this exam actually was. (Although a couple hours watching the sci-fi network may have helped! And so my film references begin… starting with Altered States.)

We were called in after the normal pre appointment- paper-work, sit-and -stare-at-your-feet-experience of the waiting room. After being lead through the maze that is Mt. Sinai, we were brought to a room that was large and had high ceilings. There was a simple looking examination table with an unusual cloaked apparatus above it. But that wasn’t where your eyes were drawn. (so to say) Instead they are immediately focussed on the cylindrical structure behind it. (Reminiscent of the orgasmatron of Woody Allen’s futuristic Sleeper) It was all white with a black chair that was hooked up to a mechanism that would allow it to spin. And to top it off was what appeared to be head gear.

Looks like we are starting with this most intriguing unit. I sat in the seat, with head-gear on that held a reflective glass in front of my right eye-a digital link requiring no light to transmit. (City of Lost Children comes to mind) In complete darkness, with the chair spinning slowly, I watched the red dot, flashing lights and total blackness. Sitting in the dark I was reminded of the book I recently finished (that my mom was currently reading) The Wind Up Bird Chronicle, by Haruku Murakami- in which the main character spent a period of time in a well- experiencing the darkness and other transcendental experiences for which Murkami is an expert descriptor. After a period of time with sensory deprivation, spinning slowly, look-at-red-dot, flashing-white-bars, don’t-close-your-eyes, how- can-you -see-what-I’m-doing-in- this-pitch-lackness, this stage of the test was complete. I exited the cylinder with a dizzy sense – trying to regain my earthly presence.

Next stop…tilted table with head up, darkness cloak, shoot-warm-air-in-to the-inner-ear-follow-the- red-dot-so that you feel nauseas and dizzy test. Then the other ear. Then the same with cold air. Then the other ear.

Then one more test in the cylinder. I’m not sure after all of this that it is reasonable for anyone to have vestibular stability.

So… it was determined that I am dizzy and nauseas and need a coke to soothe my stomach. Oh, and that all my responses are completely normal and that it is probably due to my MS. Thanks to Mom for being there to bear witness and steer me to that coke.

Oh..am I back to square one again?

Beep..boop…beep. “Dr Verter… can you squeeze me in tomorrow?”

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It is…no, it isn’t….yes it is.

Just home from the visit with the Neuro-Ears Nose Throat expert. After a brief synopsis of my almost 20 years with MS and balance issues…emphasizing the Vertigo of 1989 and ending with the most recent bout of dizzy/off-balance/ambiguity.

I am now told that contrary to the prior consideration that yes,  it is my MS.

Okay.

Not sure why I’m always feeling that I should have known, or seen any of this enigma disease coming. It’s because I’m constantly thinking and analyzing and trying to make sense, or have control of this lot in life. I think I’m hard wired that way. As fate would have it…this completely unique, totally variable and unpredictable condition is like a CarTalk episode stagnating at Stump the Chumps.

Just when I think we (me and my treatment team) have a handle on it… we turn out to be throwing hypotheses around the room haphazardly. And that leaves me thinking…meta-thinking actually.

If only I could sit back and let it play itself out.

I’m scheduled for a test with a Dr. Dai. It’s a visual/aural test that I am told will likely leave me extremely dizzy. I was instructed not to eat 1 hour prior. Vomiting is a common side effect of the test and they apparently prefer dry heaves over content.

Since my appt with Dr. Cohen, I have been very expilary (a word my daughter made up-meaning more than very) dizzy. Now I need to figure out how to get out of the city at rush hour while experiencing said dizziness.

Looks like a job for Dr. Verter!

more later….