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Diagnosis received

Nov 29, 2008 - 0 comments

November 2008 - I received a dx of Charcot-Marie-Tooth (CMT).  This does not explain all my symptoms.  So still searching.


Sep 21, 2008 - 0 comments

Scheduled for another NCV test Nov 27/08 and seeing the new Neurologist afterwards...

How I got here....

Aug 27, 2008 - 1 comments

Onset was the sensation of numbness on the right side of my face and severe vertigo that lasted more than a month before it settled down to mild vertigo.  My PCP thought MS......

I survived a severe car accident about 20 years ago that left me with nerve damage in my left leg and foot.  I have reduced sensation and drop foot due to the nerve damage.  

I have a 25 year history of migraines that coincidently disappeared about a year before my first episode of vertigo.  I have had episodes of dizziness since I was a teenager.

After the onset of severe vertigo I was referred to an ENT.  The ENT could not find anything wrong with my ears and referred me to my first Neuro.

They did not find anything with the in office neuro exam.  The following tests were ordered:

-ENG/VNG: Considered normal however they discovered bilateral vestibular dysfunction of unknown causes and mild upbeating nystagmus -24 hour Holter Monitor - Discovered mild pvc & pacs - did not correspond with symptoms - test considered normal. -EEG - Normal-MRI of brain wo contrast -  Some crowding of the foramen magmum with no herniation.  Considered a normal MRI of the brain.

-The usual battery of blood tests to rule out vit & mineral deficiencies, diabetes, kidney function, thyroid...etc....etc...etc....all normal.  My first neuro then released me from her care as all the tests came back normal and said if anything else shows up I could come back.  

November 07 I was hit with the vertigo again and an increase in the symptoms that I was experiencing. Now I am showing the Romberg sign.

Feb 2008 - Had my appointment with my second neuro-Romberg sign still present.  I was not experiencing any muscle twitches during the appointment.  

He tested sensation with the vibrating tuning fork.  I could not feel the vibration in my right big toe.  That is the one that has gone numb on me a couple of times.  

He reviewed MRI films -he noted 3 very small white spots (note this MRI was done w/o contrast only).   He said the vertigo could be a new manifestation of migraines,  muscle twitching is probably benign and balance issues probably a result of my car accident.  

He did not want to rerun and request any additional testing at this time and said if in 6 months to a year anything got worse or anything new came up I could go back and see him.

March 08 - The numbness in my right toe has spread.  I now have 3.5 toes that are numb and part of the ball of my foot. Can't feel anything touching the bottom of the toes and It kind of feels like there is a rubber band around 2 of them.  The toes will not curl under completely voluntarily.  They tremble with the effort.

April 08 the New Neuro's report is in.....right now he thinks that my Vertigo may be MAV...Migraine Associated Vertigo.  Looks like he has given a fancy name to my Muscle twitching....Myokymia.   MRI Impression from this Neuro...There is evidence of three foci of signal abnormality near the junction between a gray and white matter that is microangiopathic in nature.  Huh?

April 08 - GP ordering NCV.  Prescribed MAV preventative and abortive medication. Blood testing this month was all normal again. Reacted to the zomig.  Propranolol at 20 mgs has not helped any of the symptoms.  Followup with GP is May 26th.

May 27/08 - NCV - Abnormal in leg and arm.  Report to Doctor expected in 2 weeks.

June/08 NCV results by phone from my GP....definately some sort of neurological disease going on (YA THINK!). Have nerve damage in my right foot and leg....LOL.. NO KIDDING!...That's probably why I'm having so much trouble walking these days! Awaiting appointment with Neuro.

July 2008 NCV Report - suggests sensory motor polyneuropathy...Awaiting appointment with Neurologist.

August 21, 2008- Neuro appt.  DIAGNOSIS Sensory-Motor Polyneuropathy. We are now looking for the cause of a neuropathy that "mimics MS symptoms".  Being referred to a Neuro who specializes in Peripheral Neuropathy (PN).  At this appt.  I have lost the vibration sensation in right great toe again and now have no response to the sole scratch test??