[maine coon]

My son has Cerebral Palsy and got sick in November 2007. He was admitted to Vanderbilt Hospital 3 times without being able to diagnose. We are now trying to get an appointment with Mayo Clinic, but have been denied twice. He is 28 years old. Below are his symptoms (some of them)
SYMPTOMS
Spring or Early Summer 2007:
• Red/purple circular rash base of neck
• Inability to move neck and painful
• Ear Problems-especially in wind
• Off and on nausea
• Body aches
• Trouble Sleeping

Beginning November 12: (cycles every 15-16 days lasting up to 6 days) will have some each day.
• Concentration Problems
• Headache
• Unreal feeling
• Nausea and vomiting
• Dizzy
• Vertigo
• Confusion
• Memory loss
• Druggy feeling and acting like on drugs
• Brain cloudy
• Slow recall
• Thought organization problems
• Myclonic Jerking (sometimes with sound)
• Vibrating
• Sinking feeling (sinking into bed)
• Inability to think of rhythms
• Space and Time
• Repeating
• Can not speak –used sign language instead
• Altered voice
• Trouble finding right words
• Childlike speech
• Over emphizing last constant of word
• Trouble understanding instructions (needed to break it down)
• Taste off
• Sensitive to smells
• Numb lips and tongue
• Swallowing problems
• Facial squinting (movement unable to control)
• Vision: cloudy – hazy –smoky
• Dry Eyes
• Itchy eyes
• Light sensitive
• Objects moving around
• Staring off into space



• Blank lost look
• Rash (red bumps with white heads on some)
• Burning skin
• Itchy skin
• Tingling
• Pain and spasms (could not be moved)
• Sensitive to touch
• Back Pain
• Extreme sweating
• Ear pain
• Sensitive to sounds
• Feet swelling
• Legs or arm trembling
• Numbness all over
• Cold hand/feet
• Red hands
• Face pale to flushy
• Rambling on in detail
• Heel pain
• Toe pain
• Wrist pain
• Muscle weakness
• Fatigue
• Hyper ness
• Lethargic
• Insomnia or frequent waking
• Sleeping all day and throughout the night
• Extreme emotions
• Fear of dying
• Burping
• Stomach pain
• Handwriting changes
• Motor skills off (both gross and fine)
• Low grade fever
• High fever 3x while on vancomycin
• Bedwetting/frequent urination
• Off and on runny noise
• Sensitive to temp.
• Joints locking up
• Not eating
• Eating too much

Vanderbilt saids it's a mystery. Mayo will not approve appointment. Other leading hospital in our area has recommended Mayo. They also started him on Topomax, but he is still have Myoclonic Jerking. Both of us have not been able to work since November. It is just the two of us at home. He has medicare.

Vanderbilt will not directly refer him to mayo because they are "specialist". They said they do not have anything to offer us and that it is psychological in nature. Psych eval at Vanderbilt was done and that team said it was Organic in nature.

Lost. No Money and trying to raise Money to go. Feel Alone. Neurologist at St. Thomas said we probably be denied at Mayo and that we should just go and wait in line for an appointment. Son is in wheelchair...more he is up the more myoclonic jerking he does...which then effects his speech and thought patterns. He spends most of his time in bed and we have to WAIT IN LINE TO GET AN APPOINTMENT!

Has anyone been denied an appointment and had to wait in line? Are we waiting for days? Don't know how to plan for the trip...how long we will be there. Do we wait in line and get seen? Or do the say...oh we will give you an appointment in 6 months.

Thanks for the opportunity to vent.

[DM]

Hello maine and welcome to NeuroTalk. Your son has alot on his plate. Wow!

Well, I will tell you my experience w/Mayo-Rochester. I went online, found the #, asked to be connected to Neurology on a Thurs and they told me to be there Tues 8am. I was beyond shocked.

I will tell you that the morning I arrived, a few people came in w/o appts, so were told to sit down and wait. There were no guarantees that they would be seen. I don't know if it's based on a cancellation or what.

I did see one of the people the next day, so know that it worked for that person. I also know a person that just went out there w/o an appt. She said it took almost 3 days, but she got in and had 3 days of tests. That's all I really know about it. And, I don't know if insurance has any bearing on it or not.

I hope you can find some help for your son and I'm glad you found us, as you are now part of a huge, caring community here. Good luck.

[watsonsh]

Hello Maine,

I am sorry to hear everything you and your son are going through.

Just a thought but one of the best neuro hospitals in the country is called The Barrow Institiute.

http://www.thebarrow.org/index.htm

Here is the link. You might want to try to get in there as well.

[AfterMyNap]

Hi Maine coon! Welcome to NeuroTalk!

I'm sorry to learn of your son's difficulties, it's hard when we can't seem to find the only thing we want, answers.

We do have a CP forum here where you might find some additional tips:
http://neurotalk.psychcentral.com/forum52.html