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on a solitary journey of discovery

Oct 29, 2009 - 2 comments
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  Am a mid-50s single gal who earns a living as a developer for 23rd largest US school district dependent upon myself and none other.  Former athlete (100m sprinter) who used to run every day, now swims daily, enjoys outdoor sports, gardening, reading, music, watercolors, crafts-quilting, knitting, embroidery & traveling.
  It's been a journey with winding spots & straight stretches to receive diagnosis of MS Monday.  Had always seen @ 30 feet what most folks saw @ 20feet (crack skeetshooter) until I'm sitting in a classroom early August.  Accidentally brushed bangs back covering up one eye & discovered why blackboard seemed so blurry.  Vision in best eye (right) was blurred w/ a tiny roving spot in the middle that was in-and-out of focus & everything a shade of blue.  No pain & no other symptoms.
  Visit to eye doc led to emergency MRI with contrast & note of white patches.  Radiologist review of prior MRI from 7 years earlier saw the same white patches (not in occipital area where vision center is) so only mentioned possible indication of demyelinating disease. Passed off to my internist who thought white patches simply echo of migraines (reason for prior MRI).
  Talk w/ neighbor who lost eye to melanoma put me on a straight stretch to get answers.  Put me in touch with local top tier eye center, seeing retinal specialist and neurologic opthamologist.  Nothing wrong physically with the eye but functionally something was wrong & so diagnosis of retro bulbar optic neuritis.  Put me on three days of IV steroids & three wks of oral.
  Kept busy being pro-active. Got attorney to put all legal matters to paper naming girlfriend & ex.  Neither knows of situation although girlfriend had agreed last year to be executor.  Just never had gotten around to $$$ & paperwork.
  Journey has at the worst turns always managed to put a bright spot such as meeting neuro optho.  Turns out to be college chemisty classmate from thirty plus years ago who also roomed with a former high school buddy of mine during medical school.  Probably received a more frank review of my situation due to conversation being on personal level than might have normally received from another medical professional.
  Led to neurologist who reviewed both sets of MRIs & agreed w/ internist.  Was about to lose it w/ only 2 hrs sleep at a time during steriod treatment, so neuro gave me Ambien to help sleep.  Relived every nightmare of my life from car crashes to other episodes waking up in terror every time I took medicine.  Will never take another sleeping pill.
  Due to my age at the time of the incident, thought cause most probably Devic's & so sought blood work which 4 wks later were negative for markers.  Then did lp & check 4 oligoclonal bands.  Got result Monday where bands showed in CSF & not blood serum.  Neuro diagnosis: MS.
  Treatment plan is to wait and see since I have no other symptoms.  Get another MRI in six months & check progression.  Could put on Avenox but since 7 year gap between prior MRIs should stable, thinks it best to wait.
  Mind is racing w/ all the future ramifications.  When? How? Decided not to tell parents (early 80s) as would destroy their foundations.  All four grandparents, parents and kid sister have fought cancer & won.  Mom (endometrial, breast & thyroid survivor) still worries about kid sister who survived breast & 1980s-era chemo treatments which have impacted her cardio & bone.  Would kill her to learn my diagnosis.
  Thoughts of all the travel I wanted to do after retiring race thru my head.  Completing pilot training & passing FAA flight exam are up in smoke. What will dating scene be like now.
  Financial impact long term has me completely freaked out since I've not much.  Despite knowing that I'm needed & useful, wish I had not gone into government 10 yrs ago.  Had over 50% pay cut & am only now back at 1998 pay levels.  State employees first ones impacted w/ budget cuts.  Like this year, have had 3 other years with no salary raise.  & obviously since govt, no bonus.  Not much to show for savings.
  Geneticist said no doubt would get some form of cancer.  ? now is, will it be that or MS that I battle first.  Alternate between wanting to fight, wanting to make the best of whatever & just throwing up my hands.

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by Lulu54, Oct 29, 2009
Tachi,
Thanks for sharing the open monologue on what brought you here.  I hope that you will spend more time around our forum and learn from even the most MS riddled members, that this disease does not bring your life to a screeching halt.  In fact, 85% or more of us will live out our normal life span, with having to compromise very little or even nothing to this disease.

I don't necessarily agree with the decision to not put you on a disease modifying therapy, Even though it sounds like your disease is fairly quiet, you never know when it will rear up and cause serious damage.  I'm not a doctor, but my thinking says a DMT is just common sense and precaution.

You should be able to work. live, love and laugh with the best of them.  Please stick around and learn all you can about MS - it is true that knowledge is power.  The more you know. the better you will cope with this diagnosis.

be well,
Lulu



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by essdipity, Oct 29, 2009
Hi and welcome. It's really not that bad! It's always a good idea to prepare, as you have, for the worst case scenario, but that's just to cover all the bases. Absolutely don't dwell on it. It's not doomsday by any means.

Read a good number of posts here and you'll find that we're a pretty happy bunch. Most of us live our lives almost as before, with some difficult interruptions, true, but we haven't put ourselves out to pasture. Don't you do that either.

I agree with Lulu that a 'wait and see' approach is probably not wise. The injectable drugs are shown to be most efffective early in the course of the disease. Unlike a great many of us, most, really, you have a diagnosis in less than 3 months. I hope you will consult with an MS specialist and read up on the opinions of the most respected scientists on this matter. You want the best possible chance of a mild course.

Sending good wishes,
ess

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