Got a copy of the letter that Mayo Clinic movement disorder dept sent to Dr Torres at UNMC omaha about his referral of me to them... they said basically in plain English... NO we cannot offer her anything that might help!! They have no more testing and/or treatments that will be "beneficial" to her care.

Hey.... guess time to get to the laughs... huh...have you ever been slapped in the face by something as big as the MAYO CLINIC???? Well now I can say I have... guess they must not be as smart up there in Rochester and they profess to be and they sure dont know me very well.. God has brought me to this and he will get me through it also!!

or guess I will look for a winery that needs a grape smasher.... or hey I could become the female Elvis I sure have the shaky leg down pat

You have a great sense of humor!! (If you want to commiserate, pm me)

sue984

Hi Mamagoo!

You do have a great sense of humor!
I hope you can find relief!
I am impressed with your faith!
Looking forward to see how you are doing!
Expect Miracles!
~DejaVu

collecting my medical records so if I find a neuro who will see me I can fire them off to them myself ...reading through them it is rather interesting... also.. not a single page is signed only the discharge summaries which have the discharge RN's and my signature on them... those who have PD there is a very impressive bio on a PD neurologist in Wichita KS... her name is Katherine Widnell http://www.wesleyrehabhospital.com/leadership_staff.asp
I posted on my facebook status asking everyone to look in their yellow pages for movement disorder neurologist... got a bunch to go through

Great idea to post on FB for the info!
Thanks for sharing!

I sent out emails to everyone I have in both of my address book so some got it twice lol posted on facebook (have over 700 just in my mafia wars family plus the ones in farm town and farmville so have a bunch that would see it. Actually, have a friend looking into one up in Canada for me.

Great idea! I hope this is fruitful for you!

Heading to Omaha tomorrow for appt with movement disorder neuro again hope he has some ideas since he was one who was referring me to Mayo. Not sure what will happen but hopefully he has some idea as the docs here sure dont.

UPDATE
didnt make it to Omaha... got sick during the night and was vomitting so stayed home no idea when I will be getting in to see hm now. Appt desk said that she was up to November and hadnt found an opening... so she would have the nurse call but no one hass

I too got a NO letter from the mayo clinic, Even after my Nero doc referred me, said, "We regret to inform you that we cannot offer you an appointment and your request did not meet our criteria for an appointment and requests for appointments are based on medical need and prioritized that way." I guess they can pick and choose their patients. But the one thing I have also learned is Never, no matter what, Never miss an appointment, because their are so many patients out there that have Movement and balance disorders that getting another is going to be a lot longer than you want it to be.

I took my son Kelly to the Mayo in MN after they accepted us for referral....he has severe pain and spastic muscles after having an ESI in the lumbar L4-L5 two years ago....they could do nothing for him.....after three weeks and a ton of money ..they said...." hey you have pain .....learn to live with it...and we have never seen anything like this before."
We have seen over 40 doctors here in CO and this includes the 16 doctors at mayo and no one has any answers for us.
He is not totally disabled by this pain and the "movement disorder" as the docs cll it...and I tried to get him to see a movement disorder doctor her in CO and he said he would not see him because he could not treat him for this as it is not a "true" movement disorder.
I am heartbroken to watch what this is doing to my son.