Sunday, May 7, 2017

Probably Misdiagnosis, but You're Not Dead

So quit complaining! 

I'm not an escaped rat, but some of my treatment has been along these lines. I'm only aware of one study a doctor was doing where all patients were given a cranberry supplement. I didn't see any problem with this, but no notice was given to patients and families for approval. That can be an issue. (I always asked what a medication was and what it was for.)

I digress. After being in coma, ''I opened my eyes weeks later, but didn't talk. I made no reaction whatsoever. Not talking or reacting was taken to be vegetative (an open eye coma). "
It may not have been vegetative state at that time, but Locked-In Syndrome. There are things later that look more like Locked-In Syndrome (LIS).


In 1995, the American Congress of Rehabilitation Medicine defines LIS as a syndrome characterized by preserved awareness, relatively intact cognitive functions, and by the ability to communicate while being paralysed and voiceless (American Congress of Rehabilitation Medicine, 1995). This syndrome is defined by five criteria:
  1. Sustained eyes opening and preserved vertical eye movement
  2. Preserved higher cortical functions
  3. Aphonia or severe hypophonia
  4. Quadriplegia or quadriparesis
  5. Primary mode of communication that uses vertical eye movements or blinking
I did have some movement, so it was incomplete. Some movement will throw a lot of people. Most expect no movement at all.


[There are] three categories of LIS (Bauer et al., 1979).
  • Complete or total LIS: Quadriplegia and anarthria. No eye movement.
  • Classic LIS: Preserved vertical eye movement and blinking.
  • Incomplete LIS: Recovery of some voluntary movements in addition to eye movements. 

I remember using the shaking 'T', a sign in American Sign Language (ASL) for toilet, to ask for the bedpan. I had some movement in my left hand. I would finger spell in ASL. (Mind you I never had a class, but I knew it.) Nurses reacted. When I had private insurance I think doctors had suspicions of LIS. I heard a therapist mention my bleed was near my pons. (A pontine bleed is associated with LIS.)

When I switched to government insurance only, attitude changed. Before the change
I requested for a diaper. Bed pans were a luxury. I would not get immediate attention. I wasn't in a place in skill to just 'hold it.'

As I got more movement in my left hand, an Occupational Therapist in Southern California, set up computer accessibility for me. Medicaid shuffled me around some more (different hospitals). The hospital I was last at was a long time for me. I was there over a year. I was using my Mother's laptop for browsing and watching movies. A music therapist got me to do my first e-mail.

You can see the laptop computer.
That place was closing. I still had medical issues, but I felt as  if I could manage them (provide my own medical care- That sounds crazy!). I made the move for home placement.


You can see the problem has been communication, not consciousness. This opens the door for a lot of legal problems. Why am I still unconscious? I'm published now.

A doctor refers to what I endured as the "THE WALLED IN ALIVE DISEASE! (French term for locked-in syndrome)." Locked-In Syndrome is what was earlier suspected!


You are looking at misdiagnosis. This gets more complicated as there is no malpractice lawsuit. The government won't admit to wrong-doing. 'What are they supposed to do with me now?' is the question. I'm still unconscious according to them. They may investigate. An independent lab or university may investigate. Either way, my consciousness remains to be an issue. 

We have to wait. This can be a long time or someone can step up. If current attitude puts my consciousness as low priority, it will continue as such. The government reflects the attitude of it's people in a democratic society. 

There is a tool for the average person:  PETITION. Universities or independent organizations may contact me. The federal government has refused to do Medicaid Waiver and may have written themselves out of the picture. I'm not sure if they will do anything at all...or if they even can- I am not in a facility and I have a private insurance policy as of this date (political policy may affect this).

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