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Monday, August 6, 2018

The Beginning



I was healthy, never needing to see a doctor. Never would I have guessed or known anything about ms changing my life overnight, or what MS ever was.   I was active, going out on camps into the wilderness areas with my partner. A drive to the ocean and camping the coast in remote areas was so much fun with Wil,  Going to Hot August Nights, camping, and going thru every isle of three separate Super walmart's to stock up on items not found in the small town we live in was part of the fun, along with walking the isles of the antiques and flea market vendor's, then going thru ever isles of cars displayed at every hotel.

Searching for the best spot to eat, we always made that  into a adventure. Geo caching came later, with even more spots found in remote locations on our travel paths, giving us different views of areas, and camping spots.  Backpacking into remote wilderness lakes and areas was relaxing.

MS hit me hard in 2010, and keeps progressing.

It was late December, I took a Fall while walking to the customer service booth, to get cigarettes for A customer.  A puddle of water was being hidden by another employee. He Watched me fall, but corp policy is not to say anything.. I fell hard. But needing a job, went back to my station as a cashier, scanning products as fast as possible.
A manager, took me to the side to file company papers, as a incident report, as he did not want to loose bonus for no accidents that quarter, since it was December 18th.

Within three months, I was holding onto the counter for support, my vision going double, gait was off, my wrist hurt, and then my hands froze up, dropping groceries.

  I never did see the video of my fall, that triggered MS, that they said  laid dormant in me.  I will spare the details of a broken workers comp system USA has, unions that do not work,  and lawyers are terrible, that drag on, without medical care.

The local bandage hospital we have in town initially splint up both wrist, gave me some strong pain killers, but noticed my leg dragging before leaving.  Referred me to see a neurologist, as they had none, and I must see the company Dr.

Dr Quack, I call him yelled terribly at his patients. You had to see a company Dr, not one you chose. The best thing he told me, is "You have something going on, but they (the company) will not let me run any test to prove one way or the other"

My hands were clammy, doughy to the touch. Right side pain went to left side and crossed back. He told me, impossible, as the right brain doesn't talk with left brain. But something was not right.

Clonidine, a inexpensive blood pressure medicine was used off label. This unclenched my hands. He had me go off, titrated up and down, with results of hands clenching up, and being doughy, Along with my blood pressure.
But that worked.  I did not know it is a old drug used for MS off label.  a inexpensive drugs used for pain and inflammation.

A local Neurologist was seen. Another quack, as said I was fine, faking symptoms.  Even measuring electrical flow in my wrist, to say no issue, with warming or cooling wrist to obtain his results, and me jumping with pain.  Not sure how you can fake symptoms physically seen, and what was going on.  Just knew body pain, wrist plain, and not being right.

A local GP was finally seen. Took six months to get the insurance company to approve a MRI.  In the meantime that year I was sent to a pain management Dr.

opioid, up to Morphine was used. A Initial diagnosed CRPS, "Chronic Regional Pain Syndrome", as they needed a diagnosis for pain med.  The local pharmacists asked me if I was picking up for someone on their deathbed, as the amount of morphine given.

 The local hospital used again.  MRI came back, read by the only person who reads every one's. No MS in big bold print. The Local country Dr  said they did not go far enough. Sent me to a Neurologist out of our little town.

   This Neurologist,  looked at the film, yes before CDs, each film picture would be looked at.  Four were told to keep in order, and he scheduled blood test and a spinal tap in his office immediately.

These came back with ontological bands, the rest ruling everything out.--------------------------------------------

Test of brainwaves were done with electrodes everywhere on my scalp.  Another electrical flow in both wrist. A starting point test from head to toe of how fast nerve electrical systems were moving.  I make this sound fast, but August 2012 I was diagnosed with MS, taking the first two years.  This is Fast for Diagnosing I would find out later.

Treatment started with Copaxone.
The Pain Dr weaned me off opioid and Morphine.  Cymbalta and Lyrica   were used in combination to treat Pain in Multiple Sclerosis.  The electrical zaps, experiencing, Gabapentin and Nortriptyline.
 More about that in another blog though.

Guess this is a good starting point for my blog in hope to help others, the research it takes, and how this Ever changing MS effects me.  I am not a Doctor, just always seeking information.

Ten years later, it still progresses.

Thanks for reading.--------------------------------------------
JoeY

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