dx frustration - MSA or Cereb. ataxia?

[Bud125]

Here goes...

I have been seeing several doctors (all cross referred) and all are perplexed (thier words).  Meanwhile I am confused, frustrated and suffering.
I am a married 53yo tall otherwise avg male. Until 18mo ago I was in good health, very active, and a college professor. I do not drink or do drugs. I am now unable to work or do most of the activities I once enjoyed. My mother died of cancer and my father died ostensibly from alcohol induced cerebral ataxia. Even though he stopped drinking he eventually became almost totally paralyzed and institutionalized (took aprox 10 years).
1 1/2 years ago I started becoming very clumsy, falling bumping into things, tripping over my own feet, etc.  We all laughed until I started getting hurt.  I realized that I couldn't correct myself or avoid an accident once it started.  At about the same time memory issues cropped up.  Phone numbers, names, day of the week became increasing hard to remember, very especially new information.  When I could no longer dial a new phone number without looking one number at a time, I sought help.  The neurologist I saw did all the standard neuro tests including CAT scan, blood work, and cognitive tests.  CAT scan was normal, blood work was normal, I showed gait, balance, coordination, dexterity, memory an minor cognition impairments.  He didn't know what was wrong but put me on Aricept® (donepezil).  He said I did not have Alzheimer’s.   It helped the memory and cognition difficulties most and my wife said in general I was better than but not fine.  I still take it but its efficacy is waning.
To make a long story short, additional issues developed over the interim from then.   One of my problems is I don’t know what is related to whatever is wrong with me and what is coincidental. The one feature they all share is my doctors’ confusions as to their causes and their sudden abrupt appearance.  More than one doctor has commented, (fill in the symptom), might not be so strange if I were 90 years old.  I am just going to list them: spontaneous tension right neumothorax, pancolitis, both of which I was hospitalized for weeks each; unstable blood pressure with small dif between top and bottom numbers; new severe allergic reactions to many substances and medications; recently, they added that I am breathing OK, but oxygen doesn’t seem to be getting to my tissues.
Neurologically, my walking and balance have grown much worse, I need shower bars, etc..; I can barely write or do most things that require manual dexterity; my strength seems to wear out easily; I am easily exhausted; have numbness and tingling in my neck (constant stiff neck); most of my sense of taste is gone; worst of all my vision is deteriorating (right now it is left 20/200, right > 20/400).  Before it significantly worsened reading was especially difficult as if my eyes wouldn’t track the lines right.  This week my neurologist seemed very interested in the fact that when I dream I physically act out the dream, kicking flailing, screaming, talking.  My wife is ready to kill me at this.  I have no clue why this would be “meaningful.”
None of my doctors can tell me what is going on except to measure and agreeII have become so debilitated.
Whatever it is, even if it accounted for only some of the symptoms would give me a point of focus but no clue leaves me alone in the dark.
Any ideas?  Thanks!

[Bud125]

Thank you for your reply, I truly appreciate it.

This week my neurologist ordered an mri, some more blood work, a 72 hour eeg(?), and referred me to a "sleep specialist".  The sleep issue is the least of my concerns, I still don't understand how it is relevant overall.

What concerned me about your reply is that my post didn't spark for you a sense of what might be wrong to cause my most disabling issues.  It supports my Drs' confusions.  

It troubles me so much that after all this time, the progress of my symptoms, and the many tests that there are nno suggestions of a cause?  How is this possible?

I'd think I was juct crazy, except they all agree on and can "measure" "its" progress.

again, thank you anyway.

[DrNoopurMD]

Hi,

Thanks for posting.
It is difficult to give an opinion without a clinical exam. I would suggest you to get an MRI of head and neck done. Tingling numbness and stiff neck could be due to disc prolapse. An MRI will also help to pick up any changes in the brain tissue due to ischemic injury or Alzheimer’s.
Sleep study and polysomnography will also help. Take care!