45612-full
ALSSUX
Sex: F
Data Quality: 1 star
ALS: 4 yrs
Bulbar: mild
Arms: moderate
Chest: none
Legs: moderate

ALSSUX

Female, 52 years
Carmel, IN

Primary Condition
ALS
First symptom
Diagnosis
Deceased
Jan 08, 2014

About ALSSUX

I live in old town Carmel, in a quiet, friendly neighborhood. I share my home with my partner of 11 years and our two rescue dogs; Chester a corgi-mix and Hector a havanese. I love to cook, ride my bicycle and spend time outdoors gardening and landscaping. Since the onset of my ALS symptoms, most of my hobbies have been altered or abandoned. Update 8/11/12: I have renewed two interests -- bird-watching and star-gazing. Both require patience and sitting still. Luckily, I was blessed with patience and I've become an expert at sitting still :)

I believe my symptoms started in mid-2009.  It was then I began to notice a difference in my handwriting and figured I just had a problem with my hand.  I didn’t think much of it then.  My mother was in the mid to late stages of dementia and my focus was on her.  After she passed away in April of 2011, I decided to have my hand checked out.

I made an appt with my PC doctor.  His belief was it was a carpal tunnel issue, although I had experienced no pain, but he referred me to a neurologist for an EMG test.  The neurologist indicated there was not enough nerve damage for a carpal tunnel problem, but found muscle irregularities to indicate a possible MND, mentioning ALS.  He ordered a ton of blood work, an MRI of my neck, and referred me to a neurology specialist.  The blood work was normal; the specialist came to the same conclusion, but wouldn’t give me a diagnosis.  The MRI showed two compressed nerves in my cervical spine.  So I was referred to a spine surgeon.

The surgeon took an X-Ray of my neck, and during his evaluation he noticed my hyper-reflexes.  He was not convinced that the problem with my hand was connected to the issues in my neck, so he ordered an MRI of my brain.  That MRI came back normal.  After my neurologist saw the results, his recommendation was for me to have the surgery.  I prayed on this decision for a few weeks, and then went back to the surgeon for another consultation.  When he was pressed, he gave us odds of 50/50 that the surgery would help my hand.  I ran from his office as fast as I could.  I wasn’t about to let someone cut open my spine for a 50/50 chance!

My neurologist had told me to come back for another EMG test in six months, or sooner, if I experienced other symptoms.  In October 2011 I started experiencing severe pain in my right shoulder; I went back to my PC doctor.  He prescribed me a round of steroids (which took care of my pain) and referred me to the neurologist.  With minimal testing, the neurologist told me this was a progression of the undiagnosed MND.  He asked me if I had researched the disease and told me to look into my disability options.  He again told me to come back in six months or sooner if necessary.  To say I was frustrated with his advice was an understatement!   At this point I “fired” both my PC doctor and neurologist.

I started researching alternative forms of treatments and read a few books related to ALS.  I started taking supplements and changed my diet.  I no longer drink coffee or alcohol of any kind.  I also cut out any foods with artificial sweeteners or MSG.  I try to eat only organic, whole foods; no processed foods.

I went to my new PC doctor in January 2012 for an annual physical.  I found a new neurologist who was referred to me by a family friend.  My first appt with her was March 15, 2012.  By this time my symptoms had progressed to my right leg.  She diagnosed my ALS, prescribed Rilutek, physical therapy and occupational therapy.  I have an appt on May 15 for an AFO for my right foot drop.

I received a Bioness L300 the first of  June to use for my right foot drop.  Although it is a great device, it did not work for me as well as I hoped.  So I returned it on June 30, 2012 to avoid the $6,300 cost.  I currently use a quad cane inside my home, to help with balance, and a wheelchair outside my home.

 I see a massage therapist regularly.  She uses a form of therapy called Ortho Bionomy.  This really seems to make a difference.  I will also continue to exercise and follow the dietary changes I made late last year.    

Updated August 6, 2012

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Member since: May 12, 2012
Last Login Sep 16, 2012