Wednesday, January 2, 2013

Please turn in your MS card on your way out

Last post I noted that my wife Jackie and I met with my neurologist on 12/31/12. While we did get the good news that the lesions have not moved, which, we hope, means that we're holding off the disease with exercise, brainwork and attitude.  Since I can't take a pill to kill off MS, I'll go with that.  Yay, us.

Now this of course, would mean that I have MS.  You see, doctors are always comparing you to charts and graphs as to what category you are in. Bipolar has a number of levels and it depends on your actions, thoughts, and deeds to figure out where you are and what treatment can be recommended.  This is so that medical professionals can report their findings to insurance companies so that the companies can pay their fees, etc. to the doctor and his organization.  It's been this way for a long time and whatever Obamacare turns out to be, won't be changing for a while.  This also allows for a consistency in diagnosis as the patient moves along, everyone has the same frame of reference.

And as a person with Primary Progressive MS, I - oh, wait (snap) I forgot. I don't have MS now.  I did when I walked in to the neuro's office on Monday.  When I came out, I had Demyelination Disorder (Double D).  See, I don't have any lesions in my spinal fluid or in other areas where those things go to create havoc, just in the brain.  And since to have MS, you need to have more lesions in more places, I just don't make the cut.  So I've moved from ICD 340 to 341, out of MS but still neuro diseases.  ICD stands for: International Statistical Classification of Diseases and Related Health Problems.  They are the ones who wrote the book.

"So what does he actually have?," my wife asked.

The neuro shrugged. "I don't know, but it does not fit the categories of the McDonald list for MS, which makes him a 341."

Here is the McDonald (a research pioneer in neuro diseases) list, recognized by neurologists as the defacto reference tool...
Clinical PresentationAdditional Data Needed
* 2 or more attacks (relapses)
* 2 or more objective clinical lesions
None; clinical evidence will suffice (additional evidence desirable but must be consistent with MS)
* 2 or more attacks
* 1 objective clinical lesion
Dissemination in space, demonstrated by:
* or a positive CSF and 2 or more MRI lesions consistent with MS
* or further clinical attack involving different site.
New criteria: Dissemination in Space (DIS) can be demonstrated by the presence of 1 or more T2 lesions in at least 2 of 4 of the following areas of the CNS: Periventricular, Juxtacortical, Infratentorial, or Spinal Cord.
* 1 attack
* 2 or more objective clinical lesions
Dissemination in time (DIT), demonstrated by:
* or second clinical attack
New criteria: No longer a need to have separate MRIs run; Dissemination in time, demonstrated by: Simultaneous presence of asymptomatic gadolinium-enhancing
and nonenhancing lesions at any time; or A new T2 and/or gadolinium-enhancing lesion(s) on follow-up MRI, irrespective of its timing with reference to a baseline scan; or Await a second clinical attack. [This allows for quicker diagnosis without sacrificing specificity, while improving sensitivity.]
* 1 attack
* 1 objective clinical lesion
(clinically isolated syndrome)
New criteria: Dissemination in space and time, demonstrated by:
For DIS: 1 or more T2 lesion in at least 2 of 4 MS-typical regions of the CNS (periventricular, juxtacortical, infratentorial, or spinal cord); or Await a second clinical attack implicating a different CNS site; and For DIT: Simultaneous presence of asymptomatic gadolinium-enhancing and nonenhancing lesions at any time; or A new T2 and/or gadolinium-enhancing lesion(s) on follow-up MRI, irrespective of its timing with reference to a baseline scan; or Await a second clinical attack.
Insidious neurological progression
suggestive of MS
(primary progressive MS)
New criteria: One year of disease progression (retrospectively or prospectively determined) and
two or three of the following:
1. Evidence for DIS in the brain based on 1 or more T2 lesions in the MS-characteristic (periventricular, juxtacortical, or infratentorial) regions
2. Evidence for DIS in the spinal cord based on 2 or more T2 lesions in the cord
3. Positive CSF (isoelectric focusing evidence of oligoclonal bands and/or elevated IgG index)
You can basically say there are five round roles.  Alas, I am a square peg.  Probably many of you are also.  It's been said that MS is a single disease with only 500,000 variations for the 500,000 people affected by it (or its been said now). I admit there is a lot of gobbledygook medical speak attached here, and you might want to hit the Google button to learn up.  But in the long run, it doesn't matter.

"It doesn't matter what the name of the disease is for the sake of insurance companies and international organizations." I told my neuro. "What matters is what it means to me. When I wake up, assuming I got some sleep, how do I feel? Can I walk well? How dizzy am I? What can I do today? I'll still call it PPMS until I hear something different, a diagnosis from you.  Since I'm taking no pills, and the only chance for a full life is up to me, what difference does it make? That disease name explained my father's suffering and mine so far.  The only Double D I know is Dunkin Donuts."

(Yeah, I know. Enter your own joke here.)

Buddha taught that all sentient beings know suffering and are experiencing it every day of their lives.  What matters is how you deal with it for yourself and recognizing that others suffer as well, even the most well off among us.  The compassion you have for both yourself and other's suffering, whether that suffering be from neurological disease, hunger, a bullet (both visible and invisible), other illness, lack of love, or whatever, determines the quality of life you can have when you open your eyes (internally and externally) each day.

I asked my neuro if I should turn in my MS card, and not go to support meetings. He just smiled and said "No, you're too important."  I'm not, but like I said in the previous post, this is the new mission and this is what I do.  Hope to see you at the next meeting.

Thanks for reading. More to come.

Chart courtesy of Wikipedia.


No comments:

Post a Comment