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Lesson Learned

Dec 23, 2008 - 1 comments

When my kids were little, it seemed that every year we added a new Christmas tradition or party.  My family and my DH's also upped the ante on gifts every year.  And of course the kids made friends, I made friends with the moms, and then there were daycare-givers and teachers and goodies to be taken to school parties and special holiday fund-raisers for the marching band.

That was bad enough.  Then my new job included a practically mandatory holiday potluck party.  Then it was decided that we would exchange joke presents at said party.  Then someone added that our kids would each exchange with another kid there.  ENOUGH!  When I griped about the additional workload (assigned in the middle of grading finals, no less) I was seen as quite the Scrooge.  Others pointedly said that they did it so THEIR kids would learn the spirit of giving.

Well.  That was the year I swore off the escalation.  Every year since then, I've cut out one or more traditions, attended one less party, spent less time at the DH's folks' house.  And pleaded with both sides of the family to stop gift-giving among us adults and reduce it for the kids.  I'm trying to innoculate my kids against Affluenza.

This year it's been a -- dare I say it? -- Perfect Storm --- NOOO, don't use a cliche that was awkward from the first --- oh, what the heck, get on with the freakin' sentence -- a Perfect Storm of Christmas Simplification. Both sets of grandparents called an end to the gift-giving except for little kids.  So there was very little shopping to do.

And what a good thing because between my waves of exhaustion, my depression, and the amount of time I'm spending getting tested, the house isn't clean, and forget about sending Christmas cards!  

I felt terrible about this for a few weeks.  Then I noticed that the important stuff, the traditions my young son really cares about, happened without my hyperplanning. HE wrapped the few gifts we're giving (with red electrical tape instead of ribbon; they'll be charmed).  HE made most of the gingerbread cookies.  I got my husband to order and pick up the dinner for Christmas Eve.  

Today it occurred to me that I'm the only one who cares about the clean house.  And with my feet up and a mug of egg nog in front of my face, I can't see any dust bunnies.  

Multiple Sclerosis Tracker

Octarine's Adventures in Limboland:  Abridged Version

Dec 17, 2008 - 1 comments



Swallowing difficulty

For those looking for a quick summary of my status, here you go:

Possible MS symptoms started in 1991, at age 31, with a TIA or hemiplegic migraine.  The next (possible the first) event was intentional tremor interfering with activities of daily life for about a month, in 1993 (age 33).

After 15 or 17 years, I'm on my third neurologist and for the first time, doctors are believing me.  But no diagnosis yet.  

I have the gamut of progressive symptoms including bladder, bowel, cognitive, and pyramidal (balance) issues.  And depression.  An MRI in 2003 was normal; in 2008 I have 4 or 5 juxtacortical lesions, with none in the brainstem.  Abnormal auditory evoked potential and balance tests.  LP in my future unless I can avoid it.

Anticholinergics for bladder spasms.  Oxybutinin worked briefly but dry mouth and eyes were very bad side effects, and I had overflow incontinence.  Detrol XL worked briefly and then didn't, but the side effects were minimal.  Vesicare worked the best, for about a week, and now the damn frequency is back.  Considering my retention, I expect intermittent clean cath to be recommended.

Propranalol for tremor and to help prevent migraines.  It lowers my already low blood pressure, though, so I counter it with salt tablets.  That has eliminated my lightheadedness.

Midrin for migraines I don't prevent, and I also take it for pain behind one eye on advice of the neurologist.

Miripax for my one restless leg, but it made me nauseous, and the restless leg is only occasional.  I'll take it as needed and see if that works.

Meclizine as needed for vertigo.

Vitamins B6, B12, and D3 in doses beyond the RDA, on doctors' recommendations.

Oh yeah, and now I'm having trouble swallowing.  Could be the dry mouth, says my dentist.  When my tongue pushes my morning oatmeal up my nose, that's a bother I have to rinse out with a saline wash.  It's rather more dramatic when the meal includes chili sauce.

And when I sing, my voice skips.

Activities of Daily Living:  I've stopped driving long distances and at night, and I know not to schedule more than one major errand in a day or I'll need a nap.  Sometimes I need the nap anyway.  Sometimes I use a cane for balance.  I ALWAYS use the alarm on my PDA now so I don't forget meetings and appointments.

Disclosure:  of symptoms and possible MS dx, to husband, family of birth, and a few close friends.  Not to employer.

Thanks for reading this!

Octarine's Adventures in Limboland, Chapter 3

Dec 17, 2008 - 2 comments



Pain behind eyes


extreme fatigue


Raynaud's phenomenon


mild cognitive impairment







Pardon me while I go take some pain medication and pee for the 12th time today.

Ahh, better.  Those pills will be working by the time I finish writing this.

It's now 2008, and my marriage has reached a point where I stopped trying to get him into couples counseling and just went by myself.  At the first visit, the therapist gave me a questionnaire that included whether I'm taking care of myself, such as "last physical exam?"  I had switched to a different clinic (with a new chart!) when I broke an ankle, but hadn't done anything else for my health lately.  So it was time to see a new doctor.

This time I made sure not to use any medical terms, and to present just a couple of symptoms at first.  The bladder was the worst inconvenience, so I brought that up, and he asked if I had any constipation as well.  I did, and described it, including the lack of sensation.  He referred me to a neurologist.

She's WONDERFUL!  She BELIEVES me!  On the FIRST VISIT she said, "It could be MS," prescribed one of the pee drugs, and connected my lightheadedness to orthostatic hypotension (low blood pressure).  She WELCOMED my typed medical history (time line) when I got the courage to present it to her on my third visit.  When I demonstrated my tremor, she happily named it and prescribed propranalol, which not only helps my hand a bit but (more importantly) reduces the number of my migraines.


But occasionally I jerk back to reality and realize that I'm not her most important patient.  When I went back for my MRI results, she said, distractedly, "I think it was unremarkable" as she pulled it up on the computer.  Then she gasped.  "Oh dear.  You're one of those people with spots."

There are four, maybe five, lesions on the cerebrum next to the cortex.  (No contrast was done, so there's no "separation in time" yet.)  The "maybe" fifth one is a thin layer wrapped around the surface of the right frontal cortex.  She's not sure what that one is.  And she thinks it's possible that the four other lesions were caused by migraines.

A lumbar MRI and flexible sigmoidoscopy showed no bowel problems.

Evoked visual potentials were normal, but not the auditory ones.  I'm on a waiting list for a followup with an audiologist.

A very cool balance test in Physical Therapy, kinda like the Wii game, showed that my vertigo is centrally located.  I fell during only one portion of the test.  Also, my foot neuropathy showed up in one of those tests.

A lumbar puncture -- spinal tap, for newbies -- is in my future.

I refused the fludrocortisone that was supposed to raise my blood pressure, but take salt pills, bouillon, and pretzels and monitor my blood pressure twice a day.  It's up to around 100/57 usually, and the lightheadedness is gone!

Recent new symptoms include
-- acute pain twanging behind one eye (I picture Slim Pickens, at the end of "Dr. Strangelove", straddling my optic nerve and digging in his spurs while he yells YEE HA!)
-- waves of exhaustion, especially after grocery shopping or being in other overstimulating places
-- Raynaud's phenomenon, one hand getting VERY cold and blue
-- cognitive problems, especially doing very simple mental math
-- nystagmus, eye or eyes moving so the world appears to jump.  So scary I cried the first time.
-- depression
-- swallowing difficulty
-- "scanning speech" but only while singing (my voice skips out briefly, like staccato)

I've stopped driving long distances and at night for now.  I no longer eat felafel or Doritos.

I've told my husband, family, and a few close friends.  My husband started holding my hand occasionally, and has even hugged me.  This is HUGE for him. When I told my therapist, she told me SHE has MS, and has been a wonderful help and sounding board as I adjust. She's had some of my symptoms, including the "impossible" ones "down there."

I've read every MS book at the library and bought others at the bookstore.

And now I've joined this forum.

And there's the slight buzz from my pain pills!  Slim Pickens is riding off into the sunset.

Octarine's Adventures in Limboland, Chapter 2

Dec 17, 2008 - 0 comments




How I lost faith in doctors and myself.

It was 2003, and many odd sensations and inconveniences convinced my PCP to send me to a neurologist -- back to Dr. B., my old friend who had empowered me about migraine prevention and thought my hemiplegic migraine (or maybe TIA) was serious enough to warrant a same-day visit if it recurred.  Empowered by the Internet, where my constellation of symptoms pointed to MS, I was thrilled when I got in to see Dr. B. within a month due to a cancellation.

"What brings you here?"  I handed him a typed, detailed history and explained my symptoms, using medical terminology.  (I teach college classes involving human anatomy.)   WRONG MOVE!  He was immediately suspicious, asked if I'd been on the web about this, and proceeded to downplay or dismiss every symptom.  The tremor?  Inherited essential tremor, not to worry.  The vertigo that's better when I lie down?  Benign positional vertigo, not to worry.  The dragging foot (that usually comes on after walking 45 minutes or so)?  Didn't happen in his hallway and no foot weakness detected, not to worry.  The urinary problems and constipation?  Probably have some "problems down there" so see my gynecologist.  (Yes, he actually said "down there.")  The lightning-strike pain shooting up my leg and vagina?  First of all, that's impossible since no nerve runs through both parts, and anyway, some women get discomfort like that from wearing their jeans too tight.  


"But I suppose we'd better get an MRI, eh?"  he said, clearly humoring me but not in good humor at all.  

The MRI (with contrast) report from him reads, "This was normal."  I asked if my hemiplegic migraine / TIA thing showed up at all.  "No, and there's no way it would have.  It wasn't a serious thing."  He handed me the films, suggested I seek counseling for my stress level, and ushered me out the door.

Lesson learned:  Patient empowerment is great WHEN THE DOCTOR IS DOING THE EMPOWERING.  Just don't try it yourself.

Later that year I made an appointment with the only other neurologist at the clinic about my left foot, the draggy foot, which was now getting numb in a predictable pattern, with the numbness level rising slowly with the passing weeks.  Dr. N. did a nerve conduction test, but clearly didn't believe me from day one.  When the electrodes produced EXACTLY the sensation of lightning I'd been feeling, I said so, and he told me that was impossible -- people can't feel the impulse because it's too fast.

He also suggested that I was probably just under a lot of stress.

I was so angry and discouraged that I never called back for the results.  For the next five years, the only times I sought medical help were (a) for basic upkeep (Pap tests and mammograms) and (b) when I broke my ankle -- the draggy one.  When I went to my PCP for the upkeep, I'd tell her about my latest oddity, like extreme toe cramps and falling down in IKEA.  I hoped these would get into my chart so that someday some doctor would put it all together.  But she kept saying, "these things don't excite us."  

It was clear that there was some note in my chart about me being a hypochondriac. So I stopped telling her anything except what she wanted to hear.  "How are you today?"  "Just fine, thanks."  "How's it been going?"  "Just great, thanks."  Our visits went much more smoothly without that parental disapproval thing.

In fact, I started to think maybe it was all coincidental and not a big deal.

Even after I lost sensation in my lower bowel.