Possible Great News! The Mayo Clinic Called

I woke up this morning to the telephone ringing. It was the Mayo Clinic in Rochester, MN, calling to recruit Dennis for several studies on Shy-Drager.

I don't know much more right now. He will get medical releases for the Clinic and then, if he qualifies, he will spend a day at the clinic getting poked, proded, tested, talking, etc.

This is such good news for us. I wanted to share it with all my girlfriends here at BWS.

I'm so happy for you and Dennis!!!

Oh Anno, that's great news!!! I wish you both the best!

K

Wonderful news, Anno! Keeping you both in prayer and heart.

I, too, am really, really happy for you!
Good, Good luck to you and Dennis!
Dancer

Thanks, girls. I have a inner feeling that this will be a godsend for both of us.

I was just telling D today, how I want to grow old with him - healthy and full of joy. Today, this seems like a real possiblity.

This sounds like really good news. You sound hopeful! So that you can grow old together... PL

Wow! How wonderful is this?!! I'm so happy for you both. Thank you for allowing us to take this journey with you!

FANTASTIC!!!!! Congratulations.

Thanks, girlfriends, for sharing this bumpy road with me!

Oh Anno, I'm so hopeful for both of you. It would be a blessing if they could slow this down.

Anno, thanks for sharing the news. I'm wishing you both the best.

That is great news Anno. Is this the clinical trial that your wrote about on your blog?

Anno, that is so awesome!! Please keep us posted!

This sounds like awesome news...congratlations! And do keep us posted!

Thanks, girls. Yes, it is the trial I wrote about on my blog (thanks for continuing to read it girls) and yes, we are hoping it slows down the process.

We have accepted that he will die of this disease/syndrome, but it would be oh, so wonderful, if he could live a bit longer and healthier.

I will keep you posted, you had better believe it. You ladies are my source of strength, and I continue to hold you each in my heart as you share this journey with me. Thanks for being here.

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!!

OH Anno what good news to find when I opened this thread! Sweetie I am sure your heart is soaring on the wind. Happy thoughts!

We'll be keeping you and Dennis in my prayers and thoughts. So glad you are keeping us posted on all of this. Blessings friend.

Thanks Song and Sandpiper. We have been communicating via email at this point, but the news, so far, sounds great.

We have tons of hope in us and thoughts from girlfriends, like you, raise the hope bar, so much.

Anno, somehow I missed your original post and want to say I too am thrilled for Dennis and you. When speaking about Dennis to a friend she asked if he had been to Mayo Clinic and if not, why not? She is a doctor here in Vegas. I will share your positive, good news with her tonight at dinner.

Thanks, Chatty.

We haven't been to Mayo yet, because of the waiting list and insurance issues.

Have a great dinner tonite.

Anno, you have been so diligent with advocating for Dennis. You're setting such a wonderful example for all of us. I'm praying your tenacity pays off for both of you!

Great news! And congratulations! Can't wait to hear the "rest" of the story!

Hopefully more to come, and soon. We just sent in the release of information to his doctors. Hopefully, this whole experience is easier than our experience with social security disability.

Thanks, Dotsie. If I didn't love him so much, perhaps I wouldn't work so hard. He is good to me and I try to be good to him, too.

Dennis is in! The Mayo in Rochester want him down for 3 days for tests and procedures.

We just need to schedule the date.

I blogged about it today, so if you are wanting to learn more, check it out.

By the way, I have a big old smile on my face right now.

oops, I wrote the blog today, but it won't show until tomorrow am. When will this edit thing be fixed?????

GRRRRRREAT!!!

What wonderful news!!!!

PRAYING even harder for our guy Dennis...

Thanks, Gals. It looks like he will be in 8 different studies - all about Shy-Drager. I am so thrilled to know my girls are cheering us all on!

More info to come....

Dear Anno, this means there is hope, doesn’t it?
I pray the doctors can break through this terrible disease.
Like the rest of the ladies here, I am

Dear Anno

I'm sending love and light and holding a picture of Dennis healthy, whole, and happy. Let us know what you need!

Pleased that this has happened for Dennis and you...looking forwrd to hearing how things progress...
Mountian ash

It's always so nice to know I have so many supporters out there in this world.

No, he will not get a change in his diagnosis, by participating in these tests and studies. Perhaps, someone else will in the future. But he will have a specialist look at his needs.

It may also give us more time to LOVE each other.

My mother-in-law had spinal meningitis 50 years ago, when it was considered a slow death sentence. She was one of the original test subjects in a new drug research. She was cured and lived to be 80.

There's always hope. If not for you, then for the next person.

I wish the best for you and Dennis.

You are so right, Meredith. We are always holding out for a change in the final outcome. But, if not Dennis, then someone in the future. A legacy, so to speak.

What wonderful news. Prayers and blessings!

Congratulations Anno! We've been praying and hoping you'd be able to get Dennis in. The studies sound interesting. I hope in some way they will help address Dennis's needs. They may not be able to stop it but help him deal with it all. My prayers will stay with the both of you dear one.

Keep us informed.

Anno, that is awesome!!

I can't thank you enough for allowing us to be a daily part of your lives. I never tire of reading about it. I think you're both exceptional people. God bless!

It's is such a joy to have great girlfriends in my life. Thanks you, one and all.

We have yet to finalize the appointment(s), but it looks as if it will be early October. Naturally, I will keep you all posted.

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

Hi Chick. I just saw this. How sweet of you to read it so frequently.

Ladies, I have been a busy girl, and I will be in soon to catch up with all of you. I miss you all.

Tuesday night Dennis and I head to Rochester to spend a few days at the Mayo. Please keep us in your positive energy fields as Dennis visits the foremost expert in the world on D's disease.

I will let you know everything later this week.

I'm so glad you came hear to fill us in and ask for positive energy for both of you. I'll pray there's some connection between Dennis and the expert, that the expert listens and hears what Dennis has to say, and that he is able to do soemthing to improve his quality of life. Bless you for being his forever advocate.

Like prayers (dotsie's) on my part... and don't forget, we will be coming along with you to the clinic in spirit!

Anno...safe travels...go on wings of angels, knowing you are guided and blessed.

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

With you all the way with a basket full of blessings.

I will be holding you all very closely while we are at the Mayo. If you feel your shoulder being brushed, know it's just me leaning in for a quick hug.

And we will be holding you two close to our hearts.

All aboard! The Dennis Spirit Train is leaving Tuesday night and we're all on it, Anno...we love him...and you, and we're praying for a successful, learning journey!

God's speed...

Lean in darlin', lean in! We'll be here!

The first day of tests is done. We spoke to two different nuerologists, and they agreed they do not have enough conclusive information to tell us much. Tomorrow's test should give them the information they believe they need.

The problem is that Dennis' is not following the regular pattern of any of the diagnosis of any one disease. They think it is MSA, but then maybe it is a strange, and horrible, parkinsonian type disease.

They did agree on one thing. Dennis probably has a short period of time before he becomes even more disabled. I am so glad that we are going to London in early December to visit my sister and bil.

Anno,
I've been gone so excuse my lateness in posting. I read your diary with painful reaction. You must be have such a hard time.

I pray there is a DX soon and you know what he is facing. Since I have a Nuero condition, I know that they are difficult to find at times and sometimes it is a matter of elimination. Oh how I suffered until they diagnosed me.

In every way, a Nuero DX is hard and you must be hurting. I'm sorry, very sorry, for his pain and strife and for yours.

I'd like to keep up with your progress and will keep you and your whole family in my thoughts.

Godspeed,
Dancer

Hi Anno, the waiting must be excrutiating. Thoughts are with you and Dennis.

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.

I guess I may need to change the name of my blog!

That is the best news yet. I would love to see something good in the blog about Dennis making great strides towards recovery. I never miss a night with him in my prayers.

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

I've just caught up with your blog again. You are amazing, Anno. Perhaps the biggest miracle of all is the love you and Dennis share.

Anno, wow, what a roller coaster. Looking forward to hearing the results of the next test with you.

It feels as if we are living this with you. I'm counting on hearing even more good news... take care. We love you.

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.

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.

Anno, come in when you can, but know we're right there at the grocery store with you, right there at the test, wherever...

Your blog keeps our connection strong and I thank you kindly for taking the time to write it.

What a book it is going to make.

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

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.

You are all so sweet. I love each of you!

Yes, we are going to visit my sister and BIL in London, again. We are also going to get a hotel in Central London - and we plan on meeting up with Poppie and Lola, again. Anyone else want to join us?

Dennis' love of travel is equal to my own. While it wears the heck out of him to travel, he lives for it. He also knows it is so important for me and he will do almost anything to ensure that I get my needs met.

So travel, while tons of work, keeps us happy.

I am not a wonder woman. I am only doing what each of you would do, were the circumstances the same. And that is the truth.

Anno, you are such an inspriation, and so is Dennis. I admire both of you for continuing to live fully in the midst of his illness. London? That's fantastic. So glad that travel also gives you something grand to look forward to. That's so important.

More new news! And great news, at that.

Next week Dennis and I are headed to the Mayo Clinic for one more test. This is the radio=active test I mentioned earlier. We were scheduled for December, but Dennis decided he wanted more time to consider the test. We are hoping this test will rule out Shy-Drager and thereby remove his death sentence.

In addition, the nuerologist and his team, that heads up this research, has decided that Dennis will be one of the 5 patients each year that they see outside of this particular research.

We have an appointment on January 27 and we have been told to pack for up to 10 days. We may be sent home on the 27th, may be put into a hotel, or Dennis may be admitted to the hospital for closer observation.

Hold onto your hats, gals. I believe I may be innundating you with lots of news over the next two weeks.

Love to you all.

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.

Keeping you and Dennis in my thoughts, Anno!

Hoping for the very best/humlan

Oh my! Great news indeed. Our thoughts continue to be with you and Dennis. Great hopes for good news at Mayo. Do keep us informed no matter how many posts you feel like making.

Blessings dear boomer sister.

Thanks girls.

Humlan, are you back in Sweden?

Shy-Drager is a strange disease, Celtic. Go to some of my early posts on my blog. July and August have some good information on the disease that we are hoping (and given that he failed the last test, oh yay) that he does not have. We were living with that diagnosis since his hospital visit last May.

Good news Anno. And yes, please do keep us posted about your darling Dennis's progress. This is such positive news..

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.

We will all be cheering from the wings as you make this journey and can't wait to hear the progress made. God's speed, my dear friends...and congrats on getting rid of the car. You go girl!

i got to start rembering about the blog, i never do ,sorry so i go try to get into it and read it now

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.

It's two seperate visits, Lola. One this week for the test - it's the last of the research project Dennis signed on for. Then next week we go to Rochester (Mayo) for an intake visit, where they will review his CAT scan, the tests he has taken at Mayo, and attempt, we believe, to diagnose what ails the poor guy.

Whenever we go down there, we are at their mercy. We have no idea what we are in for, but they treat us with the utmost respect.

I'll post more as I know more. Thanks for all of your support, girls. I really appreciate and Dennis just glows when I tell him about all the gorgeous women out there sending him love.

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.

Love does conquer all. You and Dennis are living proof.

If it doesn't conquer all, it sure makes the tough stuff easier.

Life never gets dull in this house.

I went to work this morning and withing an hour, the school secretary told me she had put a call into my voice mail. She must have dialed the wrong vm, because nothing was there.

A few hours later there was another call for me. This time she found me. It was Raquel, Dennis' PCA. Dennis had fallen and broken a window. Thankfully he did not get hurt.

In addition, the appointment for tomorrow at the Mayo has been cancelled because the drug required had not arrived from Japan. (The drug is illegal here, but since it is a research project, they are able to use it).

Dennis won't get out of bed. He is so down about falling, and almost passing out at my parents on Sunday. I came home early from work to put a call into his doctor about his depression.

I know this post is a ramble, but I needed to get it all out.

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.

Anno, never a ramble. All makes sense to me. I think talking to the doctor about depression is a good thing. Good Lord, of course he's getting depressed. And I believe anti-depressants can really move the clouds.

When the medicine arrives, can you get another appointment quickly, or do you have to wait?

Has the doctor said anything about increasing Dennis' medication for his low BP, Anno? A relief he did not hurt himself in the fall.

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.

The doctor called back and told me he was sending in a prescription. I will pick it up tomorrow.

He does take a medication for maintaining his bp, but some of the meds he takes for movement counteract that medication. It's complex. That's why we are anxious to see the specialists at Mayo.

You are right, Eagle, about the fall being mentally debilitating. It's always one more reminder that he is not in full control.

I am happy that I can say what I need to say here. If people respond, or not, it's great knowing that I have a safe place to tell the truth.

Anno, I don't respond to every post but every time I read of you and Dennis, I say a prayer.

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.

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?

celtic, me question also.

Anno, I've siad it before and I'll say it again. I admire your tenacity with care giving. I know you're head over heals in love, so it make sit easier, but dang, you're good.

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.

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.

Oh, darn - I just mentioned those of you who posted after my last post! I love you all, even if I did not mention you by name. Really, you all mean the world to me.

Anne, I have my Wii, and while I am not as faithful as Eagle, I do workout weekly. I also have a job that keeps me walking up and down steps everyday. Every little bit helps.

No matter how dark the situation; I pray that Dennis and you keep the steady light of hope.

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!

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

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.

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.

Humlan, great to see you here again. Dennis comes back fairly quickly from a fall and at least he did not cut himself on the glass. His poor face can't take many more scars!

The medicine arrived and we have another appointment scheduled. I am still not sure, however, that I really want Dennis to take this test - radio-active materials???? But it is his choice, and I will support him no matter what.

I called the clinic and inquired about the visit to the movement disorder nueorologist this coming Tuesday. I was hoping to get a bit more clarification on how long we would be there. But they still said, 2 days to 10 days. Maybe even just the 2 hour intake visit.

So I asked for a substitute teacher for 3 days. If I need longer, no problem. If I need less - I will take advantage of the time off and sleep in and read.

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.

Okay, here it is, Monday evening and I should be packing for a 2 to 10 day visit to the Mayo, right?

Wrong.

The insurance called and nixed the visit. When I called billing at Mayo, they said the need $5000 for us to walk in if we do not have insurance coverage.

It's a long, dull story, but I decided to still stay home for the next two days and get this straightened out. I rescheduled the visit for the next opening - late March.

We still will go and participate in the research project sometime next month - the one with the radio active drug.

JJ said it Mercury in retrograde - sure is something.

It's been a whirlwind month, and we haven't even accomplished anything. Whew.

Anno, I'm so sorry to hear this. I know how hopeful you and Dennis were, for information at the least. I'm guessing you're writing the insurance company as to WHY they denied this.

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

I will spend the day crafting a letter to everyone concerned. If the insurance company continues to deny, I will write to government reps, who are suppose to be concerned about health care.

This visit will happen!

I know your tenacity. I believe it will happen.

Enjoy your couple days off. Maybe you were intended to have a few days break at home aome with one another.

Praying you meet with success so you can get more answers.

SInce soem of this is about insurance companies, I'll share my insurance frustration.

My daughter went to diabetes education classes this past summer which I was told were covered by our insurance company. I've since gotten many bills, spent hours on the phone, learned over and over again that they are covered, but am STILL receiving bills which will soon be sent to a bill collector even though I don't owe them. The insurance company, for some reason, has not shared with the billing company that we are covered for this type of education. Life goes on...

Anno, my prayers are with you and Dennis.

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.

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!

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.

Ed3,
Chris Como from GMA takes insurance companies to task for people
who are given a hard time. You could try to email him. Perhaps
he'd help. I don't know. But maybe it'd be worth trying.

you sound strong and focused ann. All power too you! on this one

Anno,
I have had family members go to the Mayo Clinic. I know they
provide excellent care at that facility and don't blame you
for wanting to go there. Seriously, the news media investigators get results other folks do not. Good luck with everything!

Anno, I hear the difference between local doctors and Mayo. It's similar here with Hopkins.

You make excellent points about the eventual cost differences. Also, getting your doctor on your side should help. I have confidence that you know exactly what you are doing. Keep up the good fight.

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.

Anno,
Okay. I finally went back to the beginning and read
what you were talking about. That [Sky-Drager] diagnosis must relatively new. I have a Merrriam-Webster's Medical Dictionary and it is not listed in there. I pray you have the best possible end-result with this situation.

We are back at the Mayo for research purposes on Monday and Tuesday. This is the test that uses the radio active materials from Japan. We will inquire around about how they may be able to help us with our quest.

The insurance company rejected our second request yesterday.

Thanks for all of the suggestions about contacting TV shows, etc, but I don't think this situation qualifies. To the insurance company, there are many other doctors that are in his network, that are capable of giving a second opinion. And to them, that is all this is about - a second opinion.

I think that I need to send the letter outlining the difference in a second opinion and a trip to the mayo. But I am going to wait and see what we are able to find out next week while we are in Rochester.

Anno,
If I missed something, I'm sorry. I'm sure you know what's best
for both of you. Someone told me to contact TV investigators
about a problem I have and I couldn't do it. It sounds good but
that's a difficult thing to do. Prayers and blessings,

No apologies necessary, Jabber. Like you, it's just not something I could do. I doubt there would be any interest, anyway.

Thank you all, for your well wishes. I probably don't say it often enough, but knowing that I have so many girlfriends in my life, makes my day brighter each day. I feel that I have a second family here at BWS. You all have been so kind to both of us.

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.

Anno,
I'm with you. People here seem like a second family: A very
warm, wonderful family. And that warms my heart, too.

Anno..how are things going for you and Dennis?

Thinking of you often!

You are so sweet, Humlan.

Things are okay. We have not heard the results from the latest test, yet, but I expect to soon. Here is a synopsis of our 2 day visit, though.

We started at 10am with Dennis getting his vitals taken and then a mixture of iodine and water down his throat. The iodine was to counteract any issues with the radio-active isotopes that were injected.

Then we'd have an hour off, and back to the research labs for an injection of the isotopes.

Then an hour and a half off and back to the labs for pictures.

Then an hour off and back to the lab for vitals.

Finally we'd have enough time to grab something to eat and head for bed. The second day, though, we needed to drive back home - about a two hour drive.

We were both exhausted. And with no results, unsatisfied.

I will write more as soon as I know more.

Thinking of you and Dennis, too, Anno. I know this must be a difficult time for both of you, but I think you know we're all rooting for y'all!

Anno, praying your efforts will result in results.

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!!!!

Dennis sent me 1 dozen, long stemmed, red roses, (with a heavenly scent) with flowers the size of baseballs. he sent them to work so he could show off. Another reason he is a keeper.

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.

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.

Ann, my two cents:



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.

Thanks, Lola. I will look for that information.

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

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.

Thanks, Celtic. I appreciate your thoughts.

your welcome anno

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.

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..."

We have the referrals, but the insurance keeps talking about being out of network.

I called the insurance company today, and this guy was saying no to everything, but oh, so politely. Finally he asked where we lived. It seems his company may have signed him up for some HMO in another state.

Perhaps everything has been a typo error after all.

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.

We received a letter from D's insurance company yesterday. It seems they are willing to support the first visit of the movement specialist at Mayo.

The letter worked.

I was thinking about the Law of Attraction. I am so not a winter person. Now that spring is happening, I am beginning to feel hopeful, once again. And guess what - good news is beginning to come my way.

Coincidence? Luck? Hard Work? Timing?

All of the above, most likely Anno.

I agree chats. All of the above, and boomer prayers!

Celebrating your good news with you.

I also feel lighter and more hopeful in the spring.

Yes and Boomer prayers.

We also heard today, that his insurance woes have finally been straightened out (remember they were denying all of his claims, saying he was only covered by an HMO a state away?). So, hopefully those bills will be paid and I can stop spending my evenings talking to folks in India.

Oh Anno I'm so happy for you and Dennis regarding the insurance being finally straightened out. Great!

Shows that perseverance pays off. I ‘m a great believer in that.

Thanks, all. This has been a big relief.

I don't mean this as an "I am feeling sorry for myself" type of moment, but don't you all think this stinks? How hard we have to fight for what is rightfully ours?

I only wish I knew all of the right answers.

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.

Josie, I am naturally a cynic, turned pollyanna by sheer work, and have returned to a state of cynicism through dealing with insurance companies, and all of their related parts.

I would love to have my picture on a dart board of an insurance company. I would consider it a complete honor.