From the beginning, I knew that Michael J. Fox and I had little in common. The meds never held me for more that 3-4 months at the time. Then my symptoms would return. Which led to an increase in medication which worked for 3-4 months ago. This has been a continuing cycle since 2008. Then my neuro referred me to another neuro. The new neuro (on my first visit) said that I definitely did not have plain, ole Parkinson's -- he just did not know what. This lead to every test known to man. All of which revealed nothing. The only deficiency was a low B-12 level. The neuro believed that I may have SupraNuclear Palsy or Multiple System Atrophy. We then agreed that a referral to Mayo was the answer. So I waited ... from April 2012 until December 2012 when Mayo in Florida could finally see me. In less than 3 weeks, my life turned around. Because I, at last, have a name to call "it" which is Lewy Body Disease. I don't have dementia or Alzeheimers (yet) but I do have mild/moderate cognitive abilities. I will continue to have good and bad days; without notice. But now I have a name to call it which is a relief. I had gotten to the point to where I honestly believed that I was making it up. Only my partner believed me. I am sure that the road ahead will be rough, but now I am happy just to have a name to call my ailment and that name is Lewy Body.
However, circumstances have changed yet again at Mayo. I continue to see my local neurologist regularly. Additionally I am seen annually as part of a Lewy Body Disease study (this was last week).
This time, my neurologist became aware that my physical and cognitive were not progressing as he had expected : my cognitive levels have remained at the same level for 3 years; while my physical abilities seem to have had a rather quick decline.
Now, they believe that I may have either Multiple System Atrophy or Progressive Supra Nuclear Palsy.