The Multiple Sclerosis Tapestry: Interviews with People Whose Lives are Affected by MS

I met Joan on-line through her blog some months before I was officially diagnosed with Multiple Sclerosis.  Joan is an excellent resource and support to anyone who has been told that they have this disease.  She has been living with MS now for 22 years and what I get from reading Joan's story is that there is hope to live a happy and productive life despite having this disease.  Joan embodies the spirit of resilience.  I am most honored to introduce to you, Joan Wheeler. 

Joan Wheeler

shortinthecord.blogspot.com

Newark, Delaware

Secondary Progressive MS

Have had MS for 22 years

When were you given your official Multiple Sclerosis diagnosis?

The "official" diagnosis finally came in 1999, although I was given a tentative diagnosis in 1995.

Did your diagnosis take a long time?

Yes.  Looking back, we now know that I've had MS since 1986.  A "maybe" diagnosis was given in 1995, and finally a firm diagnosis was given in 1999.  Because my symptoms and attacks were all so different, it took a long time to connect the dots. 

This is a very short version of my story, so I invite you to read the full version of my long road to diagnosis via my retrospective memoir here.

 What tests did they do to get to the diagnosis?

EEG, brain and spine MRI, spinal tap, and blood work to rule out lots of other things like rheumatologic problems.

What was your reaction to hearing that you have this disease? 

The first time I was told that I might have MS was on my 36th birthday in the ophthalmologist's office where I was being treated for optic neuritis.  The doctor muttered something about sending me to a neurologist.  When I asked why, he said "you have MS."  After I said, "WHAT?" he said, "I thought you knew.  You've had optic neuritis twice and you are in your mid 30's.  Oh, and happy birthday."  I thought the doctor was nuts because my idea of MS was of people in wheel chairs, but I could walk (I was just blind in one eye).  I didn't understand at that time that optic neuritis is a common symptom of MS. 

But four years later when the "official" diagnosis came through, I was actually hoping that I had MS and not one of the other more horrible options being considered such as a brain tumor. 

What sorts of symptoms do you or have you experienced?

I have experienced severe vertigo and dizziness, optic neuritis, Lhermitte's sign (electric shock sensation when I look down), pins-and-needles from the waist down, severe spasticity/muscle spasms, tremors, foot drop, cognitive problems, emotional liability episodes (pseudobulbar affect), and intractable fatigue.  Oh, and memory loss.

Currently, the biggest problem I have is the debilitating fatigue.  Periodically I need to walk with the assistance of a cane and a brace.  Wanting to have fun with this, I have designer canes that match my moods from www.fashionablecanes.com.