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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!

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Avatar universal
by doni54, Dec 18, 2008
Wow!  What a story!! I've been having symptoms about as long as you, but nothing as severe as your first episode.  Mine started with fatigue, and arm and leg weakness and being more clumsy than usual.

Still riding the limboland train like you, just now making it to my first neuro in Jan.  I hope mine will be as good as the one you finally found..........I'm praying everyday!!!

I really am glad you found this forum, it is such a great place.  Your experiences will help other limbolanders know how to deal with the things that they go through.

Take care,

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