Hi,

I wrote my entire story and decided it was more than any one needed to hear! I have a long history of a great life full of fun, happiness, friends, family, church, and work! It is complicated by an episodic illness that seems to have stumped the physicians. Until now my illness has been an inconvenience, a life lesson to slow down and enjoy the good times. Now it has turned into H E _ _! So now I am turning to you, so I can vent, share, care, and for you to help me find where to look for answers.

I love puzzles and am usually good at them. My 3rd hospital admission this year I felt like I was a patient on Dr. House. The young student spent hours reviewing my history, asking me questions, watching and analyzing exactly what happens to me neurologically. Because, in reality I have two if not 3 separate neurological "things' happening!

He was so close, he knew it was basal ganglia, he witnessed the right side weakness, he understood the NEW SYMPTOMS as a reaction to CYTOMEL, he understood that the NEW SYMPTOMS seem to have triggered OLD problems were always post illness and post exertion. HE understood that they were NOT the same thing! Wow, we could do a cardiac stress test (I already had inappropriate sinus tachycardia, probably caused by autonomic dysfunction) and thus induce symptoms to evaluate from a neurological perspective!

The problem is that the Psychiatrist from hell stopped him just before the third commercial!

In 5 minutes she decided I was PSYCHOGENIC MANIA! She ignored my request to talk with her co-worker the psychologist who was on the phone with me during two of the neurological events! She refused to talk to my adult son because "...there was nothing he could say to make her change her mind". When talked to my friend over the phone, she gave her description of mania and ignored my friend telling her that she was NOT describing the reason she brought me to the hospital!

That was the end of my hope for quality care, and the beginning of my descent into a medical nightmare.

I went from respectable member of my medical care team, to a piece of dirt with less value than the slime on the bottom of your shoe. My care deteriorated until on the 4th admission I was almost completely disabled unable to walk, talk or eat without passing out. They added in Lisonpril to lower my blood pressure (I was already on a beta blocker). The nurses never came when I had problems, despite that fact that I was on a telemetry floor, and roommates visitors were telling them I passed out in the middle of a sentenct while eating! They ordered tests that would have delayed my cancer care, they ordered Lipitor without consulting me (my nuerologists had previously told me NOT to take it). They wanted to send me to discharge me to a residential rehab. Thank God I went home, when my friend was delayed from filling the prescription for LISONPRIL I stopped passing out with each meal, and I could walk to the rest room and stand up without passing out.

So, now I have a story to share, a puzzle to solve, and a need to be heard and supported through the process.

I have an endocrinologist from a cancer center who confirmed that the Cytomel and my Parathyroid were enough to trigger the initial symptoms. Two months later he is working to slowly get that back in control (my labs are ridiculously out of whack especially my phosphorous and T-4.

I am recovering, yet I still have episodes of the "new stuff". The latest as I was winding up at physical therapy. It is the speech and feeling presyncope and both legs to weak to walk that is the new stuff! It lasts from 15 to 45 minutes, and resolves with stillness, reappears with exertion. Then I have increased problems for 24 or more hours with the old stuff. The physical therapy is for the "old stuff" I am working on my gait, my right leg and arm turn in and curl during and after an episode or post exercise.

Please guide me to where I should start, before the neurological neglect permenantly damages my heart!

Helpneedednow

Hi helpneedednow and Welcome to NeuroTalk. WOW! I can't even begin to give you advice, but thank you for sharing your journey to getting here. NT has so many interestng and informative forums and members.

Hopefully, someone will come along soon w/some advice. Gald you found us.

hello dear one,
I come to Neurotalk because I have had PARKINSONS Disease for 15 years,
today - is a very shakey day, so please overlook my spellingsssss.
I remember when I could or at least - I thought i could multi task,
if you are an american -we have been taught somewhat incorrrect...
I realize you need a miracle - ASAP!
in faith I know God heals, and he puts people in our path too help us,
yet as you mentioned above - some people who love to use power,
like to play God -so pray for them...
now this is where you never ever thought you would be - me neither,

now we are showing our faith in God - I only feel i can mention this
because you spoke of attending church,
it is now- where the rubber meets the road, I do not havee a clue to your
age, but I hope you know what that old sayingg means...

try to take life -one moment at a time - be thankful for that moment.
pray always for others because - there is always going to be someone
who is much worse off than we are...

life is a mixture of happy and sad - be grateful you have had much happiness
because some have an entire life of sad...

hope and have faith, pray believe - and listen for that small soft voice of wisdom.

I do not know what you have, but God does... and i will pray for you,
for God's grace...to help you rest in his arms. see Psalm 91

I will leave you with a funny hypothesis, from a lady named erma bombeck
she said -

• I have a theory about the human mind. A brain is a lot like a computer. It will only take so many facts, and then it will go into overload and blow up.

I have been told that my episodes are "basal ganglia" either siezures or stroke like symptoms depending on how they are interpreted.

They are episodic, come after physical exertion, and disapate with rest. They will then come back again as soon I become active. Active can be as mild as talking for more than a few minutes to walking. Once an episode is triggered it is several days of "restful activity" to avoid reappearance of symptoms. Then I am fine again, until the next episode.

These episodes have occured after about 35 minutes of grocery shopping, physical therapy, and having fun with the kids.

These are new and NOT really the same as my old "right side dystonia", though the new episodic events bring on the "right side dystonia". The right side dystonia is only post exercise, and I go for months or years without evidence of it. Then a flu, bronchitis or other physical problems will trigger "the crud" and I am back weak again.

Any idea where to begin!

Faith is good, but it is not getting me better! I have been making so much lemonade out the lemons life is giving me that I am floating away!

i

Hi Hon.

My name is Melody and I read your most carefully written post.

You do have a bunch of stuff going on now don't you. And when I read what that psychiatrist from Hel* said and did, well, it really didn't surprise me. Many doctors think it's all in our heads.

Sometimes it is but many times IT IS NOT!!

I am not a medical professional, but we do have some very learned people on these forums.

I do hope one of them can chime in and give you good information. You most certainly deserve it after what you have gone through.

I wish you well.

dearest hopeneeded

please -
google these words:

basal ganglia symptoms of oxygen deprivation and toxicity
also have you had any dental problems?
try to remember -when you started having odd symptoms
also keeping a daily journal of the days -and what you have eaten, drank etc...
lastly do you use diet sugars, aspartame, drink diet soda's...

all neurological problems are body -mind -and spirit -the body cannot live seperately, you can not cut off your head and remain alive -
and the spirit is the ghost that runs the machine/ mud body.

so please do this even though- you may have doubts ;

first - you need to thank your legs etc. for trying to do the best they can
I do this - being dxd at age 30 - with PD - I am now 45...
stats may say -I should be pushin up the daisies - I do not deal with stats.

I am blessed to be alive - they say you only can live with this illness
for 20 years - I dont believe this

I was also in a semitruck accident - my car went under the semitruck
the doctors all told me - I really should have died, but here I am?

here are some lyrics for you to read:
and about those lemons - hey if there free -keep em -

Many nights we pray
With no proof anyone could hear
In our heart’s a hopeful song
We barely understood
Now we are not afraid
Although we know there’s much to fear
We were moving mountains long before we knew we could

There can be miracles, when you believe
Though hope frail, it’s hard to kill
Who knows what miracles you can achieve
When you believe
Somehow you will…
You will when you believe

Easy to despair,
When all you hear is fear and lies
Easy just to run and hide,
Too frightened to begin
But if we dare to dare
Don’t wait for answers from the skies
Each of us can look inside
And hear this song within

There can be miracles, when you believe
Though hope frail, it’s hard to kill
Who knows what miracles you can achieve
When you believe
Somehow you will…
You will when you believe

They don’t always happen when you ask
And it’s easy to give in to your fear
But when you’re blinded by your faith
Can’t see your way clear through the rain
A small but still resilient voice,
Says hope is very near

(There can be miracles, when you believe)
Though hope is frail, it’s hard to kill
Who knows what miracles you can achieve
When you believe
Somehow you will…
(Now you will)
And now you will
You will when you believe

You will when you believe.