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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.

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572651 tn?1530999357
by Lulu54, Dec 17, 2008
I just finished reading chapters 1, 2 and 3 and wanted to respond immediately but first I had to go pee for the 20th time today.  You made me laugh out loud and fortunately I didn't pee my pants sitting here reading your writing.

You give your age range away by referencing Slim Pickens - love him in that role.  Yee ha!! So glad those Cold War days are over, or at least they are if you don't count N. Korea, Iran or a half dzen or so other countries.

I think your journey is similar to so many here- they become discouraged, belittled and feel betrayed by the medical system, so they give up until their bodies eventually force them to find a doctor who will listen. I have about 8 different doctors who I have seen this year - I can identify with all the referrals you got to see sepecialists when obviously one good MS neuro could have handled all of your symptoms.

It is so good to have you here sharing your experience so others can understand they are not the only ones out there struggling to make sense of this crazy disease.  I hope you will stick around and keep us posted on your medical updates.  Besides, I can always use a good laugh- you obviously are going to deal with the MS with a giant dose of humor.  

Thanks for the journals,

Avatar universal
by Octarine, Dec 17, 2008
Wow, thanks, Lulu!  It's great to have a forum to meet others with my struggle.  And yes, this journey has given me lots of material.  Sometime I'll post my rap about spastic bladders.  And my MRI experience involving Barry Manilow and Saddam Hussein.

But for now, I must go tend to children.  Peace to you and yours.

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