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#174649 - 02/14/09 06:19 PM Re: Possible Great News! The Mayo Clinic Called [Re: Anno]
Dancing Dolphin Offline
Member

Registered: 03/06/06
Posts: 2529
Loc: Southern California
Anno, that's so sweet. I remember when I worked out of the house and got flowers from time to time. It's fun because everyone wants to know who they are for and from.

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#174758 - 02/15/09 05:35 PM Re: Possible Great News! The Mayo Clinic Called [Re: Dancing Dolphin]
Anno Offline
Member

Registered: 09/15/05
Posts: 4434
Loc: Minneapolis Minnesota
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.
_________________________
Follow our story of living, loving and laughing with a debilitating disease:

http://www.multiplesystematrophyandshy-drager.blogspot.com

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#174764 - 02/15/09 06:04 PM Re: Possible Great News! The Mayo Clinic Called [Re: Anno]
Lola Offline
Member

Registered: 06/23/06
Posts: 3703
Loc: London UK
Ann, my two cents:

Originally Posted By: Anno
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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#174766 - 02/15/09 06:06 PM Re: Possible Great News! The Mayo Clinic Called [Re: Lola]
Anno Offline
Member

Registered: 09/15/05
Posts: 4434
Loc: Minneapolis Minnesota
Thanks, Lola. I will look for that information.
_________________________
Follow our story of living, loving and laughing with a debilitating disease:

http://www.multiplesystematrophyandshy-drager.blogspot.com

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#174787 - 02/16/09 08:14 AM Re: Possible Great News! The Mayo Clinic Called [Re: Anno]
Happy Birthday celtic_flame Offline


Registered: 11/24/06
Posts: 2930
Loc: Belfast/Northern Ireland
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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#174796 - 02/16/09 09:15 AM Re: Possible Great News! The Mayo Clinic Called [Re: Lola]
Anno Offline
Member

Registered: 09/15/05
Posts: 4434
Loc: Minneapolis Minnesota
Lola, of course I don't mind! You can pm me, if you wish, or just answer here.

Thanks, this is new territory for me.
_________________________
Follow our story of living, loving and laughing with a debilitating disease:

http://www.multiplesystematrophyandshy-drager.blogspot.com

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#174797 - 02/16/09 09:15 AM Re: Possible Great News! The Mayo Clinic Called [Re: Anno]
Anno Offline
Member

Registered: 09/15/05
Posts: 4434
Loc: Minneapolis Minnesota
Thanks, Celtic. I appreciate your thoughts.
_________________________
Follow our story of living, loving and laughing with a debilitating disease:

http://www.multiplesystematrophyandshy-drager.blogspot.com

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#174805 - 02/16/09 09:41 AM Re: Possible Great News! The Mayo Clinic Called [Re: Anno]
Happy Birthday celtic_flame Offline


Registered: 11/24/06
Posts: 2930
Loc: Belfast/Northern Ireland
your welcome anno smile
_________________________
"Our attitude either gets in the way or creates a way," Sam Glenn

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#174869 - 02/16/09 01:14 PM Re: Possible Great News! The Mayo Clinic Called [Re: celtic_flame]
Dotsie Offline
Founder

Registered: 07/09/08
Posts: 23647
Loc: Maryland
Lola, great idea, but should she leave that thought in the letter somewhere? I think it's a good one, but possibly not the best ending.

It's good to end with something upbeat like:

It's with much excitement that I await your response because I believe you are capable of allowing me a new lease on life, (or whatever you see as the greatest benefit of getting another opinion). Make them think they could do soemthing totally awesome for another person. Maybe that will tug on their heartstrings.
_________________________
Founder Emeritus of Boomer Women Speak and the National Association of Baby Boomer Women.
www.nabbw.com
www.boomerwomenspeak.com


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#174890 - 02/16/09 05:54 PM Re: Possible Great News! The Mayo Clinic Called [Re: Dotsie]
Lola Offline
Member

Registered: 06/23/06
Posts: 3703
Loc: London UK
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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