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#156102 - 08/12/08 08:43 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: Anno]
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Member
Registered: 06/02/06
Posts: 753
Loc: USA
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I'm so happy for you and Dennis!!!
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#156121 - 08/12/08 10:47 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: Dancing Dolphin]
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Member
Registered: 03/22/05
Posts: 4876
Loc: Canada
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Wonderful news, Anno! Keeping you both in prayer and heart.
_________________________
When you don't like a thing, change it. If you can't change it, change the way you think about it.
(Maya Angelou)
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#156140 - 08/13/08 01:22 AM
Re: Possible Great News! The Mayo Clinic Called
[Re: Anno]
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Member
Registered: 11/11/04
Posts: 3503
Loc: Colorado
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This sounds like really good news. You sound hopeful! So that you can grow old together... PL
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#156163 - 08/13/08 05:18 AM
Re: Possible Great News! The Mayo Clinic Called
[Re: jawjaw]
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Member
Registered: 01/16/07
Posts: 3404
Loc: USA
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FANTASTIC!!!!! Congratulations.
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#156297 - 08/14/08 05:19 AM
Re: Possible Great News! The Mayo Clinic Called
[Re: Anno]
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Member
Registered: 09/26/04
Posts: 3910
Loc: Alabama
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Anno, thanks for sharing the news. I'm wishing you both the best.
_________________________
chick ~ Here is the test to find whether your mission on Earth is finished: if you're alive, it isn't ~ ~ Prayer is the most we can do for another human being ~
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#156323 - 08/14/08 09:32 AM
Re: Possible Great News! The Mayo Clinic Called
[Re: AdornmentsMilani]
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Member
Registered: 01/10/06
Posts: 992
Loc: Honolulu, Hawaii
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Anno, that is so awesome!! Please keep us posted!
_________________________
Cenn on FB
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#156326 - 08/14/08 11:53 AM
Re: Possible Great News! The Mayo Clinic Called
[Re: diamond50]
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Registered: 08/12/08
Posts: 676
Loc: Wauconda, IL
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This sounds like awesome news...congratlations! And do keep us posted!
_________________________
Love and light, hugs and blessings MamaRed (Jerilynne) www.mamaredspeaks.com www.onemillionacts.comComing Summer 2009 "Kick-Butt Kindness: 52 No Cost Ways to Ripple Kindness 'Round the World" Let's create Kick-Butt-and-Take-Names Lives!
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#156359 - 08/14/08 02:42 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: Anno]
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Registered: 06/03/08
Posts: 134
Loc: Massachusetts, USA
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Dear Anno: May this become a great blessing for both of you! Keeping you all in my prayers. Every bit of good news helps brighten the day!!! Thanks for sharing!!
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#159258 - 09/09/08 06:59 AM
Re: Possible Great News! The Mayo Clinic Called
[Re: Anno]
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Member
Registered: 06/23/06
Posts: 3703
Loc: London UK
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GRRRRRREAT!!!
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#159264 - 09/09/08 07:10 AM
Re: Possible Great News! The Mayo Clinic Called
[Re: Lola]
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Member
Registered: 01/16/07
Posts: 3404
Loc: USA
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#159391 - 09/10/08 11:50 AM
Re: Possible Great News! The Mayo Clinic Called
[Re: Edelweiss2]
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Registered: 08/12/08
Posts: 676
Loc: Wauconda, IL
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Dear Anno
I'm sending love and light and holding a picture of Dennis healthy, whole, and happy. Let us know what you need!
_________________________
Love and light, hugs and blessings MamaRed (Jerilynne) www.mamaredspeaks.com www.onemillionacts.comComing Summer 2009 "Kick-Butt Kindness: 52 No Cost Ways to Ripple Kindness 'Round the World" Let's create Kick-Butt-and-Take-Names Lives!
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#159393 - 09/10/08 12:05 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: Mama Red]
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Member
Registered: 12/30/05
Posts: 3027
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Pleased that this has happened for Dennis and you...looking forwrd to hearing how things progress... Mountian ash
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#159793 - 09/14/08 07:54 AM
Re: Possible Great News! The Mayo Clinic Called
[Re: Sandpiper]
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Member
Registered: 01/10/06
Posts: 992
Loc: Honolulu, Hawaii
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Anno, that is awesome!!
_________________________
Cenn on FB
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#159825 - 09/14/08 05:01 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: Anno]
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Member
Registered: 09/26/04
Posts: 3910
Loc: Alabama
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Anno, I have to tell you...BWS is my first stop on the internet and then I mosy on over to your blog. It's like reading a book that keeps me interested. I always have you and Dennis in prayer and every now and then I think about you both and how you are doing that day. I am glad you put the link directly under your post. Is is so convenient to drop in from here to there. Blessings
_________________________
chick ~ Here is the test to find whether your mission on Earth is finished: if you're alive, it isn't ~ ~ Prayer is the most we can do for another human being ~
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#161895 - 10/05/08 11:20 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: Dotsie]
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Member
Registered: 01/16/07
Posts: 3404
Loc: USA
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Like prayers (dotsie's) on my part... and don't forget, we will be coming along with you to the clinic in spirit!
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#161906 - 10/06/08 02:25 AM
Re: Possible Great News! The Mayo Clinic Called
[Re: gims]
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Registered: 08/12/08
Posts: 676
Loc: Wauconda, IL
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Anno...safe travels...go on wings of angels, knowing you are guided and blessed.
_________________________
Love and light, hugs and blessings MamaRed (Jerilynne) www.mamaredspeaks.com www.onemillionacts.comComing Summer 2009 "Kick-Butt Kindness: 52 No Cost Ways to Ripple Kindness 'Round the World" Let's create Kick-Butt-and-Take-Names Lives!
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#161915 - 10/06/08 08:58 AM
Re: Possible Great News! The Mayo Clinic Called
[Re: Mama Red]
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Member
Registered: 12/30/05
Posts: 3027
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With you in spirit Ann..and that connection Dotsie mentioned..it will be there.Suggest you book yourself in for an Anno treat at the nearest holistic parlour...if you have long hanging around times. where you will be pampered..massage or whatever Or do so as soon as.. Blessings to Dennis
Mountain ash
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#161941 - 10/06/08 03:44 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: Mountain Ash]
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Member
Registered: 09/26/04
Posts: 3910
Loc: Alabama
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With you all the way with a basket full of blessings.
_________________________
chick ~ Here is the test to find whether your mission on Earth is finished: if you're alive, it isn't ~ ~ Prayer is the most we can do for another human being ~
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#161976 - 10/06/08 11:49 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: Anno]
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Member
Registered: 01/16/07
Posts: 3404
Loc: USA
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And we will be holding you two close to our hearts.
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#161981 - 10/07/08 12:15 AM
Re: Possible Great News! The Mayo Clinic Called
[Re: gims]
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Registered: 08/12/08
Posts: 676
Loc: Wauconda, IL
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Lean in darlin', lean in! We'll be here!
_________________________
Love and light, hugs and blessings MamaRed (Jerilynne) www.mamaredspeaks.com www.onemillionacts.comComing Summer 2009 "Kick-Butt Kindness: 52 No Cost Ways to Ripple Kindness 'Round the World" Let's create Kick-Butt-and-Take-Names Lives!
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#162189 - 10/08/08 10:44 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: dancer9]
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Member
Registered: 11/11/04
Posts: 3503
Loc: Colorado
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Hi Anno, the waiting must be excrutiating. Thoughts are with you and Dennis.
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#162268 - 10/09/08 09:15 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: Princess Lenora]
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Member
Registered: 09/15/05
Posts: 4434
Loc: Minneapolis Minnesota
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Thank you, each and everyone of you, for being with us these past two days.
Here is what I posted in my blog today.
This morning, we dropped off Dennis' 24 hour collection of urine for a sodium count. No matter what you put urine in, unless you flush it down the toilet, it still smells. I was very happy to leave the jugs at the front desk, and take Dennis to his next test - the sweat box.
For the sweat box, a person is stripped naked, and then covered with powder, from head to toe. You are then placed in a large plastic box, and the heat is turned up. As you begin to sweat, the powder turns from white to purple. A typical MSA/SDS patient will sweat only in patches, and large areas of the body show no signs of sweat at all. They will be spotted with purple stains. Dennis was a mass sweat producer and came out of the test completely purple. He failed this test, also.
The nuerologists are fairly certain that Dennis does NOT have an autonomic disorder, or MSA. He still is diagnosed as having stage 4 Parkinson's, on a scale of 1 to 5. These doctors are sure there is something else going on, as is his local doctor.
The next step is yet another test for another study. This one will rule out MSA completely, or confuse the situation even further. He also will receive a referral to a movement specialist at the Mayo, hopefully providing further insight to the progression of Dennis' situation.
We both left today feeling a bit lighter. The death shroud of MSA has been lifted.
Today I don't feel like asking any more questions. I simply feel like sitting here, enjoying the good news.
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#162293 - 10/10/08 01:42 AM
Re: Possible Great News! The Mayo Clinic Called
[Re: chatty lady]
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Member
Registered: 12/30/05
Posts: 3027
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Anno thinking of you there ..yes just "Simply be" and trust all is unfolded like a book with a expert writer who after stormy waters takes us to calm places. Hope between times there is a place to replenish your spirit.
Thats what "Maggies Place" does for cancer treatment patients and families here...every facet people need is there.even the soft furnishings and yoga/meditation spaces and coffee areas.Mostly the people who hang around to support all who enter love Mountain ash
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#162640 - 10/14/08 08:26 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: Dotsie]
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Member
Registered: 01/16/07
Posts: 3404
Loc: USA
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It feels as if we are living this with you. I'm counting on hearing even more good news... take care. We love you.
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#162660 - 10/14/08 10:37 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: gims]
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Member
Registered: 09/15/05
Posts: 4434
Loc: Minneapolis Minnesota
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I want to first say, how much I miss all of you. I was able to spend so much time here, last spring and this summer, and now I am barely able to find the time to respond to all of your kid and loving words.
Yes, good news was given to us, but I am taking it in with caution. Dennis is still very ill, we just don't know the name of his problem. I want to believe that he will be here with me FOREVER!, but I need to ground myself in realism, too.
Meredith, I think you are right on. I am so blessed to have so much love to share with someone that loves me, too. Miracle, or hard work, or just plain luck - I do feel blessed.
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#162665 - 10/14/08 11:14 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: Anno]
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Registered: 08/12/08
Posts: 676
Loc: Wauconda, IL
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Hi Anno
Goodness, what a roller coaster ride you are on. This is one of those times when I wish I something pithy and powerful to say...and what I *can* say is you are in my prayers, as is Dennis and his doctors. I am praying they are wise and talented and thoughtful and compassionate and filled with Spirit.
It is never easy to see someone we love suffering, is it? Know you are loved and cared for, always.
_________________________
Love and light, hugs and blessings MamaRed (Jerilynne) www.mamaredspeaks.com www.onemillionacts.comComing Summer 2009 "Kick-Butt Kindness: 52 No Cost Ways to Ripple Kindness 'Round the World" Let's create Kick-Butt-and-Take-Names Lives!
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#162691 - 10/15/08 02:41 AM
Re: Possible Great News! The Mayo Clinic Called
[Re: jawjaw]
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Member
Registered: 11/11/04
Posts: 3503
Loc: Colorado
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Anno, from you last post here, it sounds like you were brought together for a reason. Sounds corny, I know, but no doubt. I hope your forever is indeed forever...and ever
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#162712 - 10/15/08 08:27 AM
Re: Possible Great News! The Mayo Clinic Called
[Re: Princess Lenora]
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Registered: 09/09/08
Posts: 779
Loc: American living in Germany
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I just read that you are planning to go to London again with Dennis?
Well now you know what to expect and you know the ropes, so to speak. I’m amazed how you do all this. Wonder woman comes to mind. Anyway I think it is wonderful to look forward to something, and it may be the best medicine Dennis could have. No no, wait; the best medicine is YOU.
_________________________
A friend is a gift you give yourself. -- Robert Louis Stevenson
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#171716 - 01/17/09 05:58 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: Anno]
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Registered: 11/24/06
Posts: 2930
Loc: Belfast/Northern Ireland
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what is this anno. ..Shy-Drager?
hope it goes the best way possible and can't waite to hear the news, keep your chin up. love to denise.
_________________________
"Our attitude either gets in the way or creates a way," Sam Glenn
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#171727 - 01/17/09 09:02 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: celtic_flame]
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Registered: 04/15/07
Posts: 1341
Loc: Sweden
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Keeping you and Dennis in my thoughts, Anno!
Hoping for the very best/humlan
_________________________
"some sacred place.."
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#171761 - 01/18/09 07:59 AM
Re: Possible Great News! The Mayo Clinic Called
[Re: chatty lady]
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Member
Registered: 06/23/06
Posts: 3703
Loc: London UK
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Please keep us updated, Ann. I have been reading your blog and get my fill of news from there as well. Will this visit to Mayo incorporate two tests then? One for the radio-active and the other with the neurologists? Pray all be well. My love to both of you and stay well.
_________________________
<><
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#171812 - 01/18/09 07:14 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: jawjaw]
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Registered: 11/24/06
Posts: 2930
Loc: Belfast/Northern Ireland
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i got to start rembering about the blog, i never do ,sorry so i go try to get into it and read it now
_________________________
"Our attitude either gets in the way or creates a way," Sam Glenn
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#171813 - 01/18/09 07:38 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: celtic_flame]
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Registered: 11/24/06
Posts: 2930
Loc: Belfast/Northern Ireland
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goodness i am out of date with denise. cought up on some of the reading and now i understand why its changed and why your hoping its not S-d, goodness i do hopw it all goes well ann. waitng pationtlie to find out and i sure your post or email or smomething.
_________________________
"Our attitude either gets in the way or creates a way," Sam Glenn
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#171863 - 01/19/09 12:41 AM
Re: Possible Great News! The Mayo Clinic Called
[Re: ]
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Member
Registered: 09/15/05
Posts: 4434
Loc: Minneapolis Minnesota
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The problem, Anne, is science just does not know much about the brain. And, this, no matter what it ends up being labeled, is a disease of the brain. I am thankful it is not affecting his thinking.
Right now, we are covering Dennis with COBRA through his insurance at IKEA. It's not cheap, but it is great coverage. (Dennis lost his job right about the time he began to show signs of a parkisonian type disease and went to work for IKEA parttime.) In July, Medicaid should take over and the payments should decrease. We are so very lucky - we have good insurance and we both know how to find out the information we need to fight his disease.
It is rotten, but I feel lucky to have met this great guy. It came very late in life (late 40's), but every minute we are together has been a complete blessing. I hate to gush, but I love this man. And, better than that, this guy loves me. How lucky I am.
Edited by Anno (01/19/09 12:42 AM)
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#171882 - 01/19/09 07:37 AM
Re: Possible Great News! The Mayo Clinic Called
[Re: Anno]
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Registered: 11/19/08
Posts: 1758
Loc: American living in Germany
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Love does conquer all. You and Dennis are living proof.
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As soon as you trust yourself, you will know how to live. Goethe
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#172106 - 01/20/09 09:41 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: Anno]
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Registered: 08/12/08
Posts: 676
Loc: Wauconda, IL
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Oh honey...so much on your shoulders, isn't there?
I'm sorry, I truly am. Please know I'm holding you and Dennis in prayer and sending love t you.
Ramble away dear, ramble away.
_________________________
Love and light, hugs and blessings MamaRed (Jerilynne) www.mamaredspeaks.com www.onemillionacts.comComing Summer 2009 "Kick-Butt Kindness: 52 No Cost Ways to Ripple Kindness 'Round the World" Let's create Kick-Butt-and-Take-Names Lives!
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#172113 - 01/20/09 11:06 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: Dotsie]
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Member
Registered: 06/23/06
Posts: 3703
Loc: London UK
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Has the doctor said anything about increasing Dennis' medication for his low BP, Anno? A relief he did not hurt himself in the fall.
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#172114 - 01/20/09 11:29 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: Lola]
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Member
Registered: 03/22/05
Posts: 4876
Loc: Canada
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I suppose that falling must seem so demoralizing for Dennis, as if it's some sort of concrete proof that his body is not under his own control. There's as much grief in that as in any loss. He may just need to hide himself "under the covers" while he regroups and finds his courage again. The cancellation of this much-anticipated appointment at the Mayo Clinic must also be akin to yet another setback for him.
Anno, this is probably the safest place for you to come and "ramble" and vent and grieve and worry...we're here for you. I don't participate in this thread all the time, but I read every entry and follow Dennis' progress with interest, care and prayer. I hope you always feel safe to come here and just "be" and breathe with us.
_________________________
When you don't like a thing, change it. If you can't change it, change the way you think about it.
(Maya Angelou)
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#172156 - 01/21/09 12:14 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: Eagle Heart]
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Registered: 11/24/06
Posts: 2930
Loc: Belfast/Northern Ireland
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i sorry for this set back both the non arrival of drugs and the fall. As you say it it is good that youve got a place to go to when its all a bit tough, a small thing that help a lot i would think.
_________________________
"Our attitude either gets in the way or creates a way," Sam Glenn
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#172157 - 01/21/09 12:16 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: celtic_flame]
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Registered: 11/24/06
Posts: 2930
Loc: Belfast/Northern Ireland
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maybe your tommorow is our today so the drug will be along later so then is ano9ther apontment on the horison when the drug is in stock?
_________________________
"Our attitude either gets in the way or creates a way," Sam Glenn
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#172217 - 01/21/09 06:43 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: Dotsie]
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Member
Registered: 06/23/06
Posts: 3703
Loc: London UK
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Ann, I went out to lunch with a colleague today and had avocado which my friend said she avoids because it raises her blood pressure. I thought about Dennis and wondered if it could be possible that certain food like eggs as well, which we avoid because of risks to high bp, would have the contrary effect to Dennis' low bp. Just a thought.
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<><
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#172259 - 01/22/09 12:05 AM
Re: Possible Great News! The Mayo Clinic Called
[Re: Lola]
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Member
Registered: 09/15/05
Posts: 4434
Loc: Minneapolis Minnesota
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Thanks, my good friends, for everything. The drug did not show up today, so it will be next week at the earliest. It's not a big deal, really. It just upsets the guy who subs for me when I am gone. Lola, we have a nutritionist looking at diet issues. She is doing it at her own pace, but she is trying to figure out the best diet for both of us. Meredith, Eagle, I know you are with me even when you do not post. I thank you for allowing me to share my life with you. Dotsie, I try my best. And, for a change, I will admit that my best is pretty darned good. I do not want to be a care-giver for my life's work, but I gratefully do it for Dennis. Celtic, you are a dear. Thank you for being in my life. I feel like I have written an acceptance speech at the Oscars! Every single one of my friends, here and not here, I thank you for all of your support, kind words, prayer and thoughts. You have absolutely no idea of how you have kept my wings in the air over this past year.
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#172382 - 01/23/09 02:56 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: Edelweiss3]
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Registered: 08/12/08
Posts: 676
Loc: Wauconda, IL
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Hi Anno
Wanted you to know that I'm sending you and Dennis light, strength and love. Please let me know if there is something else I could/can do to support you!
_________________________
Love and light, hugs and blessings MamaRed (Jerilynne) www.mamaredspeaks.com www.onemillionacts.comComing Summer 2009 "Kick-Butt Kindness: 52 No Cost Ways to Ripple Kindness 'Round the World" Let's create Kick-Butt-and-Take-Names Lives!
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#172399 - 01/23/09 06:57 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: Mama Red]
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Registered: 04/15/07
Posts: 1341
Loc: Sweden
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Hi Anno! How is Dennis now..since his fall? Is he feeling better? A bit more "upp"? Is the medication helping? By the way..whats a Wii??? Hugs
_________________________
"some sacred place.."
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#172402 - 01/23/09 07:08 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: humlan]
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Registered: 11/24/06
Posts: 2930
Loc: Belfast/Northern Ireland
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aee the bottom forum under hobbies for news and descriptions of what a wii is, or maybee ann will tell you heer.
but its nuthing similare to haveing the toilet thats a p** lol.
_________________________
"Our attitude either gets in the way or creates a way," Sam Glenn
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#172403 - 01/23/09 07:11 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: celtic_flame]
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Registered: 11/24/06
Posts: 2930
Loc: Belfast/Northern Ireland
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well we just have to hear how it goes when the drug artrives and hope denise is over his disapointement and came back out from under the dovet. Its still my favourite place at times lol i though the oscares comment was funny as heck ann lol.
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"Our attitude either gets in the way or creates a way," Sam Glenn
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#172633 - 01/25/09 02:57 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: Anno]
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Registered: 11/24/06
Posts: 2930
Loc: Belfast/Northern Ireland
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so tues your next appontment if i read that right.
hope it goes well for then now we can all focus on it with you two.
I do hope you get the confirmasion you want out of the test. They must be nearve wracking time for you both. good luck and keep keeping us posted.
_________________________
"Our attitude either gets in the way or creates a way," Sam Glenn
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#172810 - 01/27/09 10:45 AM
Re: Possible Great News! The Mayo Clinic Called
[Re: meredithbead]
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Registered: 11/24/06
Posts: 2930
Loc: Belfast/Northern Ireland
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i soooo sorry to read this ann as i know what a relife the results from this test could be for you.
hope the insuranse company mind can be change . if not then march be it a better situasion then
_________________________
"Our attitude either gets in the way or creates a way," Sam Glenn
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#172882 - 01/28/09 03:21 AM
Re: Possible Great News! The Mayo Clinic Called
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MustangGal
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Anno, my prayers are with you and Dennis.
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#172914 - 01/28/09 02:27 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: ]
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Member
Registered: 09/15/05
Posts: 4434
Loc: Minneapolis Minnesota
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Dots, it sounds like the left hand isn't talking to the right hand, so to speak.
Anne, I am not sure that insurance should cover all of our whims. To them, it may appear as if this is just Dennis wanting a second opinion outside of his network of providers. Since we live in a large metro area, we do have many providers.
What they don't know is the type of service that is delivered at the Mayo, and how it is a completely different experience than what we get here.
For example, when we go to his neurologist here, she spends 10 minutes giving Dennis the same test as always. Then we are allowed to ask 2 questions. The visit lasts 20 minutes. If we try to push it, she gets behind and that takes time from another patient.
At Mayo, the first visit scheduled lasts 2 hours, minimum. Then one test is ordered, and you have another 2 hours with the doctor going over the results and determining what the next step may be. They are thorough in a way that most doctors are not allowed to be these days.
We were able to get into his local doc today, and we will politely point out why we desire to go to Mayo. She is a bit arrogant, being that she runs a prominent Parkinson's clinic herself, but she also admits that she has not properly diagnosed Dennis. We need her on our side to help convince the insurance company that this will be cheaper in the long run. We could see many specialists here, and not get a diagnosis, or we could go to Mayo and have done with it.
We will get there. We just have to continue to fight fair.
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#172930 - 01/28/09 05:33 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: Anno]
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Registered: 04/15/07
Posts: 1341
Loc: Sweden
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Anno..it sounds to me that you have a clear idea of what you want and where you want it to go..you meaning you and Dennis.
I was sorry to read about your setback..but perhaps it was needed to give you both time to regroup and rethink how you want to proceed..
I am hoping and praying that in the end you will both get what you need and want.And that doesn´t necessarily have to be something that you and Dennis are aware of..sometimes there are paths that we don´t see..don´t you think?
Thinking of you as always!
_________________________
"some sacred place.."
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#172932 - 01/28/09 05:54 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: humlan]
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Registered: 11/19/08
Posts: 1758
Loc: American living in Germany
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I thought Obama had a government plan for medical insurance. Did he say that, or is it my wishfull thinking? If so, hope he gets on the ball fast. It will probably take years before it can function properly.
I'm just wondering, Anno, if Dennis could get a similiar treatment in another country for less money. They do that with teeth implants and plastic surgery. Why not for other medical issues as well.
_________________________
As soon as you trust yourself, you will know how to live. Goethe
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#172988 - 01/29/09 03:21 AM
Re: Possible Great News! The Mayo Clinic Called
[Re: jabber]
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Registered: 11/24/06
Posts: 2930
Loc: Belfast/Northern Ireland
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you sound strong and focused ann. All power too you! on this one
_________________________
"Our attitude either gets in the way or creates a way," Sam Glenn
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#173065 - 01/29/09 11:44 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: Dotsie]
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Member
Registered: 09/15/05
Posts: 4434
Loc: Minneapolis Minnesota
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We spent the afternoon waiting for his local neurologist to see him yesterday. We got in and had an interesting talk with her. She is not in the least adverse to writing a glowing letter of support to the insurance company, but she had some interesting points.
I had mentioned that knowing what he has will give us some comfort. She said they most likely would give him many, many tests, and finally make a diagnosis with a name. However, he would be sent home and ultimately the treatment would not change. It is still a matter of treating the symptoms. No matter what the label, there would be no cure.
We knew that.
She did admit that she could understand the desire and need to know what it is exactly, for acceptance sake, if nothing else.
If there was any hope of Dennis' life changing because of this visit, and the insurance company denied it, I would be angry. We want to go for a proper diagnosis, and to help research and others. I believe we should have that right. So I will continue to fight.
I am living in hope that Obama and his team will find a way to correct the horrid issues that we have with insurance companies. I also hope that he addresses some of the other issues related to health - drug costs, for example. I really question the tactics of advertising drugs/ This raises the prices of specific drugs and has patients requesting drugs for problems they may have not concieved as problems before.
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#173194 - 01/31/09 04:01 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: Anno]
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Registered: 04/15/07
Posts: 1341
Loc: Sweden
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Anno..I think that there would be an interest because diseases such as Dennis seems to have are becoming more and more common..and found in much younger people. My daughter here works as a nurse at a neurological department..and often the doctors are quite stumped by the symptoms and problems. The brain/body are such a complex things..and they know so little about it all as yet.
BUT I can totally relate to it being something diffucult to do. I had the possiblity with my daughter, many years ago..but could never bring myself to do it. Pain and illness is such a private thing,too..it has many facets..
Anyway..I am checking here often to hear about what is happening with you and Dennis..you are always with me in my heart and thoughts.
Edited by humlan (01/31/09 04:03 PM)
_________________________
"some sacred place.."
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#173971 - 02/07/09 11:16 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: jabber]
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Registered: 04/15/07
Posts: 1341
Loc: Sweden
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Anno..how are things going for you and Dennis?
Thinking of you often!
_________________________
"some sacred place.."
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#173988 - 02/08/09 04:12 AM
Re: Possible Great News! The Mayo Clinic Called
[Re: yonuh]
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MustangGal
Unregistered
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Anno, praying your efforts will result in results.
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#174620 - 02/14/09 07:36 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: ]
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Registered: 04/15/07
Posts: 1341
Loc: Sweden
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Anno..and Dennis..sounds a bit tough..guys. But hopefully it will be worth it in the end. I sooo hope for this!
Please keep us informed when you have the time and the energy.
It is Valentine´s Day..so I am sending my love to the both of you..extra specially!!!
Hugs!!!!
_________________________
"some sacred place.."
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#174758 - 02/15/09 10:35 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: Dancing Dolphin]
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Member
Registered: 09/15/05
Posts: 4434
Loc: Minneapolis Minnesota
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You're absolutely right, Kathy.
Okay, I need some advice. As you may have been able to figure out, we have been turned down by D's insurance company to go to Rochester for a full diagnostic visit.
Here is the appeal letter I just wrote. Too heavy? Too light? Too emotional? Not enough of....?
Opinions, please.
I am requesting that the denial for me to see Dr. Ahalskog at the Mayo Clinic in Rochester, MN, be reviewed and reconsidered.
I am not simply requesting a second opinion on my diagnosis of Parkinson’s or Shy-Drager. I am requesting that I am seen by a cadre of specialized neurologists and movement disorder specialists to determine exactly what it is that inflicts me. I was understandably diagnosed with Parkinson’s 5 years ago, but since then it has become quite apparent with doctors attending to me, that indeed, I have another disease. Since then, the possibility of Multiple System Atrophy, Shy-Drager and Parkinson’s Plus has been tossed out as a diagnosis for what ails me.
Last summer, I signed up for research studies at the Mayo Clinic. The diagnosis of the rare disease of Shy-Drager afforded me a chance to participate in several tests to determine if Shy-Drager is the appropriate label for my disease. It would also determine if I am receiving the appropriate treatment. After these tests, it has been decided that I do not have Shy-Drager, but another unnamed movement disorder.
The doctors in my local group are unable to provide the necessary diagnostic team work needed to finally determine what it is exactly that I suffer with and therefore how best to treat this disease. It is to this end that the neurologists that I have met with at the Mayo clinic have requested that I visit one of their own movement disorder specialists for an initial visit. This specialist, after conducting appropriate tests, will then see that I am able to see the proper neurologist for diagnosis and treatment.
Without this approval by my insurance company to visit the highly recognized diagnostic team at Mayo, it is doubtful that I will know what my disease is before I die. Then, upon the information provided by my autopsy, perhaps it will be determined that I could have lived for a few more years with a proper diagnosis.
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#174764 - 02/15/09 11:04 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: Anno]
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Member
Registered: 06/23/06
Posts: 3703
Loc: London UK
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Ann, my two cents: I am requesting that the denial for me to see Dr. Ahalskog at the Mayo Clinic in Rochester, MN, be reviewed and reconsidered.
I am not simply requesting a second opinion on my diagnosis of Parkinsons or Shy-Drager. I am requesting that I am seen by a cadre of specialized neurologists and movement disorder specialists to determine exactly what it is that inflicts me. I was understandably diagnosed with Parkinsons 5 years ago, but since then it has become quite apparent with doctors attending to me, that indeed, I have another disease. Since then, the possibility of Multiple System Atrophy, Shy-Drager and Parkinsons Plus has been tossed out as a diagnosis for what ails me.
Last summer, I signed up for research studies at the Mayo Clinic. The diagnosis of the rare disease of Shy-Drager afforded me a chance to participate in several tests to determine if Shy-Drager is the appropriate label for my disease. It would also determine if I am receiving the appropriate treatment. After these tests, it has been decided that I do not have Shy-Drager, but another unnamed movement disorder.
The doctors in my local group are unable to provide the necessary diagnostic team work needed to finally determine what it is exactly that I suffer with and therefore how best to treat this disease. It is to this end that the neurologists that I have met with at the Mayo clinic have requested that I visit one of their own movement disorder specialists for an initial visit. This specialist, after conducting appropriate tests, will then see that I am able to see the proper neurologist for diagnosis and treatment.
Without this approval by my insurance company to visit the highly recognized diagnostic team at Mayo, it is doubtful that I will know what my disease is before I die. Then, upon the information provided by my autopsy, perhaps it will be determined that I could have lived for a few more years with a proper diagnosis.
I would delete the last paragraph and replace it with the insurer's obligation towards coverage for appropriate treatment. I have a few minor details to add but, must ask you first if you won't mind.
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#174787 - 02/16/09 01:14 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: Anno]
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Registered: 11/24/06
Posts: 2930
Loc: Belfast/Northern Ireland
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ann i am out of my deapth in how to approach insurance for reconsider as its not my system and don't know what to or how to phrase it that work in your advantage.
i think your hoping to make clear that your or d ise't diagnosed with anything yet ....that dose come across in reading of your letter. Also the advantiges of a proper diagnosis ...you phrased it as when you die ie autopsie id stress more the advantage to life in terms of lenth and qualitie.
good luck with this
_________________________
"Our attitude either gets in the way or creates a way," Sam Glenn
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#174890 - 02/16/09 10:54 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: Dotsie]
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Member
Registered: 06/23/06
Posts: 3703
Loc: London UK
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Ann, your appeal on grounds of medical necessity could also be assisted by a referral from the doctor who made the initial diagnosis and a recommendation by Dr Ahalskog. Do you have these? And, if not, would you be able to secure these from the doctors? I don't have the details of your health plan but, generally, insurers go by "medical necessity". Enlisting the assistance of both doctors could further support your appeal and would take it outside of the insurer's subjective test.
And to tie up the legal obligation of the insurers to Dotsie's, it could perhaps go in the way of:
"I understand that my health plan provide coverage for crucial treatments under the circumstances and now eagerly await your urgent response..."
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#174920 - 02/17/09 03:00 AM
Re: Possible Great News! The Mayo Clinic Called
[Re: Anno]
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Registered: 11/24/06
Posts: 2930
Loc: Belfast/Northern Ireland
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what do you mean a typo error?
Are you saying he wase't in your state so not familure with whats allowed and it will be allowed now...or am i just reading wrong?
think the doc reff letters is good, i know its necasary for anything being done for L and i only talking educasion wise, so must be more benifit for medical reasons for D.
_________________________
"Our attitude either gets in the way or creates a way," Sam Glenn
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#178377 - 03/27/09 07:53 AM
Re: Possible Great News! The Mayo Clinic Called
[Re: Sandpiper]
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Registered: 11/19/08
Posts: 1758
Loc: American living in Germany
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Shows that perseverance pays off. I ‘m a great believer in that.
_________________________
As soon as you trust yourself, you will know how to live. Goethe
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#179662 - 04/08/09 06:39 PM
Re: Possible Great News! The Mayo Clinic Called
[Re: Anno]
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Member
Registered: 11/08/05
Posts: 1211
Loc: NJ
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I remember going through an insurance nightmare which took all of my wits to resolve. Maybe it was just me, but every company representative I spoke to kept getting dumber and dumber. FINALLY after the 3rd major appeal, I was allowed to participate in a telephone conference where company doctors and lawyers would hear my appeal and I was given 20 minutes to state my case.
I won by sheer stick-to-itiveness I think. They probably have a datboard in their conference room with my picture on it.
Congrats on your victory. I'm always excited when we boomer women win our battles over life's thorns.
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Josie
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