[rayt123456]

Hi,

I am new here and I am on quest to help my friend, Bryant, who has mysterious illness that none of his doctors know what the illness is.

I will be checking this forum continuously.

Thanks all,

Ray T.

[Jomar]

If you share some details of symptoms and any testing that has been done , we might be able to help suggest something..
Are there any possible conditions/illnesses that are being explored or ruled in/out?

Or use the search tool here with keywords - main symptoms or such..
https://www.neurotalk.org/search.php

[rayt123456]

Thanks for the response!! I have two tables outlining his illness progression but I am not sure if it is the right place to post them.

The following is a brief narrative about Bryant's illness:

Bryant was an intelligent and dynamic person who now depends on other people to help him eat, drink, sit, and do other personal activities that many of us take for granted. His health condition has been in declining since August 2014, and there is no concrete diagnosis or effective treatment from the doctors (neurologist and psychiatrist) treating him, from both Kaiser Permanente in Fresno and the University of California in San Francisco. He is now under 24-hour care at a residential facility a few blocks away from his home. He is a beloved husband and father who resigned from his programming job in October 2017 due to his deteriorating physical and mental health.

Bryant was first diagnosed with MYASTHENIA GRAVIS in December 8th, 2014, and now is almost completely paralyzed, trembling all the time, and uncommunicative with other people. This post is to welcome opinions, suggestions, and comments from those who may be familiar with Bryant’s health conditions.

I am looking forward to reading responses from others.

Ray

[Jomar]

We do have a MG forum.
https://www.neurotalk.org/forum77/

Or do you think there is a second condition?
A list of major symptoms would be helpful, also a list of tests /results if you have it..

But we are not Drs, we are a peer to peer support community.
Something may sound familiar if you can share a list..

I'm guessing ALS & Parkinson's has been ruled out..

[rayt123456]

The following two tables contain his health information. The following information lists Bryant's health events

October 2016
Slight dizziness

December 2016
Various locations of nerve pain; Continuous Sleep Paralysis

February 2017
He suffered Vertigo. He fell at the street and couldn’t get up.
He was taken to hospital for checkup and given Vertigo medication, but he was discharged the next day in spite of continuing symptoms.

March through September, 2017
Dizziness increases.
Narcolepsy.
Cataplexy.
Increased confusion and dizziness.

October 2017
Needs to quit work since he no longer remembers and can't focus on programming.
Sleeps most of the day, is only awake for a few hours. Still has Sleep Paralysis, Narcolepsy, and Cataplexy.

October to November 2017
Suffers flu like symptoms, congestion, coughing, chills and fever.

Early December 2017
Very confused so he was admitted to Kaiser for tests.

January 2018
Transported to UCSF for more tests, talks constantly and confusion increased.
He stays awake for several days with barely any sleep.
Experiences Narcolepsy throughout the 2 week stay at UCSF.
Can hardly understand or communicate at all, the talk is just random chatter.
Sometimes he can tell his name and his wife's name when asked.
UCSF in spite of giving every test imaginable, can not find a cause for his progressive neurological condition.

February 2018
Transported back to Kaiser to stabilize mood with medication.
Begins to sleep more, can still talk, but rarely has any coherent communication.
Difficulty walking at times, uses a walker. Has constant fall risk.
Still very confused. At times he can answer his name and his wife's name when asked.

March 2018
Discharged from Kaiser.

March through June 2018
Stays home with his wife, daughter and his in-laws.
Can walk with help, wants to eat constantly, can use bathroom on his own, needs to wear Depends because of his confusion.

June 2018 to present
Fell 4 times in a few days and it is very difficult for him to get up, so he is taken back to Kaiser and in home care taking is no longer possible.
Accepted into Board & Care, a 24-hour care facility.
It is difficult to get him moved from wheelchair to sofa, difficult to get him to walk, needs to wear Depends since it is too hard to know when to take him to pee, and he can’t communicate.
Rarely speaks, mumbles some sounds as if trying to talk sometimes.
Spends most of the day slumped on the sofa.
Significant tremors.
Poor hand coordination
Difficulty moving at all.
Some eye contact.
Mostly silent


The following information contains the dates of his health symptoms, medical diagnoses (all caps), and medicines taken by him.

12/14/2014
Constant double vision. Muscle weakness that causes head to slump forward. Difficulties in swallowing food.
MYASTHENIA GRAVIS
Rituxan
Two times every 6 months

3/16/2017
Started to be unable to focus on work; always felt tired and sleepy; didn’t want to go outside.
GENERALIZED ANXIETY DISORDER
DEPRESSIVE DISORDER
Continued with Rituxan

4/4/2017
Lost hearing in right ear
RIGHT EAR HEARING LOSS
Steroid treatment for 2 weeks was not successful in restoring hearing.

5/10/2017
Had excessive daytime sleepiness; had sleep Paralysis; had
hallucinations
NARCOLEPSY
N/A

10/1/2017
Had chest congestion, had a runny nose, cough often.
FLU/COLD
N/A

12/1/2017

ALTERED MENTAL STATUS
Nuedexta 20 - 10 mg
Trazodone 50 mg
Seroquel 50 mg

12/8/2017
ENCEPHALOPATHY
Nuedexta 20 - 10 mg
Trazodone 50 mg
Seroquel 50 mg

6/5/2018
Risk of fall
MALAISE AND FATIGUE
Nuedexta 20 - 10 mg
Trazodone 50 mg
Seroquel 50 mg

Hope this information will lead to something. Will it be fine if I also post the information in MG forum?

Thanks,
Ray

[Jomar]

What is his age, sorry if I missed that..

I'm not a MG expert but I think many take mestion, was that tried?
Our MG forum has a lot of info. Yes you can copy your post there..

Possible secondary issue..
Might look into past environmental or exposure factors, EMFs, chemical exposures, overseas travels, military service/deployments.
Even where he grew up, possibly a risky or polluted area..
If you find a connection, maybe that will point to a condition caused by those....
Relatives with anything similar or other rare conditions?

Genetic testing? like 23and me - Compare our DNA Tests - 23andMe

[kiwi33]

Hi Ray

Welcome to NeuroTalk .

One option is to also describe the details of what Bryant has experienced in the General Health Conditions forum (https://www.neurotalk.org/forum2/).

Other members may recognise them and offer suggestions.

Best wishes.