My Neurological Timeline Journals
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who I was before - final draft

Jun 23, 2010 - 0 comments

I was a General Manager of a major retail store in Ohio.  I was a hands-on manager and worked 50-70 hours a week.  This was a very fast based job, strenuous and I enjoyed it tremendously.  I had a social life that I enjoyed and was very self-confident in myself and my life.  I had my own home and was extremely independent, supporting my family single handed.  I took my kids on family vacations and we went camping and fishing as often as we could on weekends.  I was slim, fit and somewhat muscular.  I was strong.  I was an avid motorcycle rider and thoroughly enjoyed going to bike rally's, events and long rides.

I started having neurological problems in September of 2004.  Doctors told me it was only temporary.  So I pushed through and continued to live my life the way I always had, even when the symptoms interfered.  In 2008 I moved across country to live with my mother, due to my health.  It was at this point that it was clearly not temporary.

It is now 2010 and I am no longer able to function even remotely close to what I so desperately want.  My life before is a thing of the past, as I am not physically able to do the activities that I so greatly enjoy.  I am worried about my future.


symptom time line - final draft

Jun 20, 2010 - 2 comments

It prints down to two pages.  It is kinda long, but then my history is too.  


Symptom Time Line for Tonya XXXXX

June 17, 2010
continuous discomfort, Guerra on vacation, went to ER
tests:  blood and urine, EKG, CT Brain, carotid duplex
treatment:  1000 mg IV SoluMedrol
conclusion: no TIA, follow-up with neurologist or PCP for continued SoluMedrol treatment

June 15, 2010
• May 2010 symptoms still present
• eyes fluttered uncontrollably and left pupil went in towards nose - lasted 10 minutes
• disoriented, brain was slow to respond, dizziness
• blurred vision, pain and pressure in eyes
• increase in pain, right side more weak
conclusion:  called Guerra, on vacation.  nurse got referral to ophthalmologist
went to ophthalmologist same day
conclusion:  possible episode of myokymia OU - refer to neurologist
              dry eye - increase artificial tears and use AT ung OU QHS, continue Restasis

June 10, 2010
follow-up with Guerra
treatment: SoluMedrol dose pack, change in medications

June 09, 2010
pain too intense, couldn't get in to see Guerra, went to ER
treatment: 125 mg IV SoluMedrol, 30 mg IV Toradol
conclusion:  refer to Guerra for additional SoluMedrol, recommend EMG for right arm

May, 2010
• pain increased tremendously, very weak legs, burning pain in right arm, pinkie and ring finger numb - Guerra changed meds
• major fatigue, stabbing pain behind left eye - off and on (forgot to tell about)
• urinary incontinence, constipation - Guerra gave new med
• severe skin sensitivity, off balance, heat/light sensitivity
• vibrating feeling around torso area, spasms around ribs on right side - off and on - Guerra gave new med
• major tinnitus, head feels full, off and on headaches, vertigo - Guerra referral to hearing center
• trouble swallowing, choking - Guerra referral to speech therapy
• UTI - treated with antibiotic

June 2009
• pain increased, severe weakness
• left side of face dropped, double vision
• major fatigue, confusion and brain is slow
• tremors returned, trouble swallowing and painful
• skin sensitivity, heat and light sensitivity

went to PCP - Guerra
treatment:  SoluMedrol injections  
diagnosis:  Nonspecific Neurological Syndrome, June 2009   Neurodegenerative Polyneuropathy, February, 2010    
             Neuropathic Muscular Atrophy with periods of exacerbations, February, 2010
conclusion:  showed improvement a little each day
              ophthalmologist - monocular diplopia, dry eye

August 2008
began seeing Dr. Guerra, current PCP
began symptom management
tests:  MRI, EMG/nerve conduction study, X-rays, upper GI series, blood and urine tests, EKG, PFT, renal ultrasound
referrals:  neurologist - Dr. Delio
           orthopedics - Dr. Lindberg / Dr. Birkholm - drop foot care/brace
           ophthalmologist - Dr. Goodman - dry eye, double vision
           occupational therapy - Mobility Therapy - mobility aides

July - August 2008
• pain increased, still in legs and right arm
• fatigue increased, heat/light sensitivity, tremors returned
• very weak legs, cannot climb flight of stairs

January 2008
• pain increased, still in legs and right arm
• severe leg weakness, trouble bearing weight
• fatigue increased, tremors returned

went to ER, admission for 5 days  
tests: MRI, blood
on-call neurologist
conclusion:  no diagnosis

December 2007 - January 2008
pneumonia / bronchitis
treatment:  antibiotics, breathing treatments

May, 2006
• tremors (meds are helping)
• pain in legs and right arm (meds are helping)
• general weakness

Cleveland Clinic for second opinion, concerned with still having a few lingering problems
tests:  MRI, EMG
conclusion: post-neuro syndrome, virus in neurological system, no TIA evident
prognosis:  symptoms will not progress, may stay same or go completely away in time
             return to ER if new symptoms arise or old symptoms progress for MRI and LP

November, 2005
went to 1st neurologist  
tests: MRI and LP - both negative
conclusion: no MS - case closed

October, 2005
Went to PCP: no reflexes in legs

August, 2005
• all previous September 2004 symptoms returned, plus:
• pain in both legs and right arm
• very weak legs
• heat/light sensitivity
• breathing issues

went to ER - thought I was having another TIA  
tests: MRI, X-rays, LP, blood, urine
treatment:  IV pain med. breathing treatment
conclusion: TIA negative, pneumonia, possible MS, refer to neurologist

September, 2004
• tingling right, backside of head
• pins and needles and weakness, right arm
• tremors, fatigue
• dizziness, disoriented

went to ER.  
tests: blood and urine, C-Scan
conclusion:  UTI, ear infection, TIA
treatment: antibiotics
all symptoms went away within about 2 weeks, except fatigue but that wasn't as strong


WHO I WAS BEFORE

Jun 19, 2010 - 7 comments

I was a General Manager of a major retail store in Ohio.  I was a hands-on manager and worked 50-70 hours a week.  This was a very fast based job, strenuous and I enjoyed it tremendously.  I had a social life that I enjoyed and was very self-confident in myself and my life.  I had my own home and was extremely independent, supporting my family single handed.  I took my kids on family vacations and we went camping and fishing as often as we could on weekends.  I was slim, fit and somewhat muscular.  I was strong.  I was an avid motorcycle rider and thoroughly enjoyed going to bike ralleys, events and long rides.

After the second exacerbation, August 2005, I lost my job, my home, my vehicle and self-confidence.  But, I picked myself back up after symptoms subsided and get back on my feet.  I got another retail management job, another home, another vehicle and began to build up my self-confidence.  I thought my neuro problems were a thing of the past, with minimal symptoms present and confident they would go away for good.

After my third exacerbation, January 2008, I lost everything again.  At this point fear set it.  It was obvious to me that something was very wrong.  I felt everything I loved to do slipping away from me.  I wondered how I was going to support my family...I had lost 2 jobs due to this.  I wanted my life back.  

I went into complete denial due to a neurologist in Ohio telling me "this was all in my head" after my third exacerbation.  I sent my daughter to my mother in CA and my life ran scared.  I drank quite a bit, laughed when my symptoms interfered in my life, completely disregarded my health and safety.  I got on the back of motorcycles when my legs were weak and wobbly.  I hid in privacy when I would get tremors until they went away.

When I could run no more and reality tried to set in for me, I moved to CA to live with my mother.  This was July 2008.  I have been with her since.  I DON'T want to have MS.  I don't want to have ANYTHING for that matter.  But, even though I do go through the denying periods, the fact of the matter is that SOMETHING is wrong...and it gets worse and worse.  

I think this is what scares me the most.  I used to have a social life...I don't now.  I used to go on bike runs...I don't now.  I used to work...I don't now.  I used to go camping...I don't now.  I used to drive...I don't now.  I used to have a pretty damn good dating life...I don't now.  I used to take showers for granted...I don't now.  I used to be adventurous...I am not now.  I used to be able to have a drink or two with friends...I can't now.  I used to be sure of myself, self-confident...I am not now.

I used to resist taking even a Tylenol for a simple headache.  Now, I take a handful of pills 2 times a day just to get through the day!  How much drugs can one body take?

I WANT MY LIFE BACK!  All of the things I have lost are BECAUSE of whatever is wrong with my betraying body....not the other way around.  When I look back at the last 6 years of my life and see everything I have had to give up and/or lose and/or miss out on...well, I get angry!  I have a chair in my shower, sleep in a hospital bed, use a walker, wheelchair and scooter.  I take some pretty potent drugs...but there is nothing wrong with me?

I just want answers.

Medications - current

Jun 19, 2010 - 2 comments

Propranolol 10 mg 2 x a day - tremors

Lyrica 150 mg 2 x a day - nerve pain

Diclofenac Sodium 75 mg 2 x a day - pain

Q-Var 80 mcg aerosol 1 puff 2 x a day - wheezing/shortness of breath

Restasis 0.05% Ophth Emulsion 1 drop in each eye 2 x a day - dry eye, double vision

Oxybutynin 10 mg 1 x a day - urinary incontinence

Baclofin 10 mg 3 x a day - muscle spasms/stiffness

Sertraline 25 mg 1 x a day - pain/depression

Doxepin 40 mg 1 x a day - pain/depression

OTC Equate Stool Softener 100 mg 1 x a day - constipation

OTC GenTeal Lubricant eye drops - as needed for dry eye

Hydrocodone/APAP 10 mg/650 mg - as needed for pain (don't take very often)