We're back from Mayo clinic, and I'm getting list emails now

[Guest guest]

Hi everyone!

Well, we're finally back from Mayo. We were able to move up several of

Mike's appointments so that we were done late Thursday. Friday we went to Mall

of

America for several hours, and got home around 8:30 p.m. Friday night.

I am VERY impressed with Mayo clinic, at least the one in Minnesota. Mike

had called them, and they had informed him he would need a referral for his

visit. It took about 2 weeks for them to set the appointment up, but that was

over the holidays. When we arrived there Monday, we met with the neurologist

that headed up all Mike's appointments. His appointment was at 9:45 a.m. I

think, and we visited with him until around 12:30 p.m. He took all kinds of

notes,

and then told us that when we left, to stop at the desk and pick up the

schedule for the next several days. We were originally scheduled to stay until

this next Wednesday, but the doctor had told us that we could go to the clinics

listed, to see if they had any cancellations, and ask if we could move the

appointment up; so we did, and were able to move most of them up.

That same afternoon, Mike had a MRI with contrast done. Then we were free

for the rest of the day. Over the next 3 days, he had an office visit with

Psychology/Psychiatry, then that afternoon, a 4-4.5 hour mental test! He said

it

was darn hard, and knew he hadn't done well on the words and such, but did

great on the math. He then had an eye appointment, where they tested to make

sure his migraines weren't caused by the empty sella syndrome. It involved a

field vision test, which was very weird. It was concluded that the headaches

were not caused by the empty sella. They also did urine analysis and blood

tests, and then one last appointment with psychology/psychiatry to just visit

and

sort of review the results of the mental tests. The last appointment, was to

meet with the head neurologist that we met with in the beginning (Dr. Fealey)

to get the results of the tests.

Here were the results: Mike did NOT have a stroke in 1997, that several

doctors in Omaha had told him he had. What was in the MRI, was a set of blood

vessels, sort of wound together in that spot, that he had had probably since

birth, and caused nothing harmful nor anything to worry about. In essence, the

MRI was completely normal! Good News! The mental tests showed that he had

decreased capacity in attention and in memory, especially for his education

level.

He does have ADHD (which I suspected, and the doctors in Omaha had

mentioned), which technically, is the same as his Narcolepsy. They are treated

in the

same way. I asked the doctor if they are interwoven, and he said they

definitely were, and the only difference, basically, is the name of the

disorder, and

that is academic in Mike's situation. They recommended that his medication

be increased to Ritilin to see if that improves his memory and attention

levels. If not, then the next thing would be a methamphetamine type drug, that

the

neurologist said several of his Narcolepsy patients are on, and they do just

fine on it. They did say they could not rule out that this is the beginning of

dementia or Alzheimer's (though he felt the chance of it being this is very

slight), because they had no former mental tests to compare his results to.

For that reason, he is to return in 1 to 1 1/2 years for another set of mental

tests to make sure that it isn't still decreasing, and hopefully, gets better.

The Empty Sella Syndrome (which he showed us on the MRI, isn't truly empty -

the pituitary gland) seems to be causing hardly any problems at all. He did

have one hormone that was significantly decreased, but the doctor wants to

review all Mike's medications to see if they could be the culprit of that, or if

indeed the empty sella is causing it. If it indicates the empty sella is

causing the decrease, then he will contact an Endocrinologist to see if they

feel

it needs to be treated, and what the recommended medication would be.

He also had an elevated blood sugar, and suggested that Mike lose weight.

Mike will be talking to his primary doctor regarding this. He also said that

Mike's doctor in Omaha should monitor this closely, as diabetes does run in his

family. The rest of the blood tests were just fine.

Dr. Fealey will be sending his final report to Mike, and to his primary

doctor within two weeks, along with the appointment time for the mental test in

a

year or so. After Mike receives the results, he will make an appointment with

his doctor, to discuss all of it, and see if she wants to manage the sleep

disorders, or whether she wants the original sleep doctor to manage them

(Narcolepsy and Restless Leg). Basically, the final conclusion was that the

sleep

disorders are not under control, and need to be medicated differently. The

chest

pain, headaches, and " just not feeling good " stuff that Mike has, are

probably caused from stress, and lack of sleep. So is the confusion and

dizziness.

Hopefully, when he gets on a new medication, a lot of this will be relieved.

It may take some playing with dosages, but we are hopeful that things will

improve a lot! All in all, it was great to finally have some concrete answers!

We both were VERY impressed with the doctors, nurses, the professionalism,

and the facilities, which are BEAUTIFUL! There is artwork everywhere, and

everything was very neat. All the people were very friendly and helpful, from

the

information desks to the doctors! I would be willing to recommend anyone to

Mayo (at least in MN), but would suggest they call the clinic to see what needs

to be done before actually going there. Since we had a referral, everything

was easy. I think if you self-refer, that things probably take longer, and

it's probably not as organized. But I do think everyone there is very

knowledgeable and capable!

We want to thank everyone for their good wishes and prayers! They worked!

We are very hopeful, that in a couple months, things will be looking up, and

Mike will be feeling lots better. If that's not the case, then Mike's doctor

will probably contact Dr. Fealey to get further recommendations.

We were glad to get home! It rained almost all the way home, so it was quite

nerve-wracking. But when we got home, Cort was there, along with Shanna, and

we celebrated our Christmas that night! Cort brought us a beautiful oil

painting of the mountains that he saw each day. It has the mountain range, and

two people walking toward the mountains, which represents him and the guide that

escorted him to Nangi. It also has a couple water buffalo, which are very

prevalent over there. It's beautiful, and Cort will go with me to have it

mounted and framed. He also brought Shanna and I a bracelet carved from wood.

We

gave him money, some trekking poles, and 4 books on Nepal. He LOVED them, and

showed us several pictures of places he'd been to. He also received money

and photo albums from his grandparents, Shanna, and his cousin, Blakley. He

will use some of the money to help develop the 350-400 pictures that he took!

He

can't wait to get his pictures back, which should be Monday this next week.

I'll be anxious to see them!

Thanks again, everyone, for all your support, encouragement and prayers! I

don't know what we would do without all our family and friends! I certainly

wouldn't want to try! We love you all so very much! If you have any specific

questions, write back, and we'll do our best to answer them!

HAVE I MISSED OUT ON ANYTHING IMPORTANT???? I MISSED ALL OF YOU SO VERY MUCH,

AND DIDN'T HAVE TIME TO CHECK THE LIST! PLEASE FILL ME IN! IF I MISSED ANY

BIRTHDAYS, I HOPE YOU HAD A VERY HAPPY ONE!

Much love and thanks to all,

Lana

[Guest guest]

Hi Lana --

I'm so glad you and Mike are back and that Mike got some answers there. It's

wonderful to hear that the Mayo Clinic was so good and so very helpful. They

sound like they are really thorough and take things seriously. I'm glad it was a

positive experience for you both.

I hope things continue to get better and better for Mike -- please give him my

best. (And to you, too)

Love,

Patti

We're back from Mayo clinic, and I'm getting list emails now

Hi everyone!

Well, we're finally back from Mayo.

HAVE I MISSED OUT ON ANYTHING IMPORTANT???? I MISSED ALL OF YOU SO VERY MUCH,

AND DIDN'T HAVE TIME TO CHECK THE LIST! PLEASE FILL ME IN! IF I MISSED ANY

BIRTHDAYS, I HOPE YOU HAD A VERY HAPPY ONE!

Much love and thanks to all,

Lana

[Guest guest]

Hi Lana --

I'm so glad you and Mike are back and that Mike got some answers there. It's

wonderful to hear that the Mayo Clinic was so good and so very helpful. They

sound like they are really thorough and take things seriously. I'm glad it was a

positive experience for you both.

I hope things continue to get better and better for Mike -- please give him my

best. (And to you, too)

Love,

Patti

We're back from Mayo clinic, and I'm getting list emails now

Hi everyone!

Well, we're finally back from Mayo.

HAVE I MISSED OUT ON ANYTHING IMPORTANT???? I MISSED ALL OF YOU SO VERY MUCH,

AND DIDN'T HAVE TIME TO CHECK THE LIST! PLEASE FILL ME IN! IF I MISSED ANY

BIRTHDAYS, I HOPE YOU HAD A VERY HAPPY ONE!

Much love and thanks to all,

Lana

[Guest guest]

Hi Lana --

I'm so glad you and Mike are back and that Mike got some answers there. It's

wonderful to hear that the Mayo Clinic was so good and so very helpful. They

sound like they are really thorough and take things seriously. I'm glad it was a

positive experience for you both.

I hope things continue to get better and better for Mike -- please give him my

best. (And to you, too)

Love,

Patti

We're back from Mayo clinic, and I'm getting list emails now

Hi everyone!

Well, we're finally back from Mayo.

HAVE I MISSED OUT ON ANYTHING IMPORTANT???? I MISSED ALL OF YOU SO VERY MUCH,

AND DIDN'T HAVE TIME TO CHECK THE LIST! PLEASE FILL ME IN! IF I MISSED ANY

BIRTHDAYS, I HOPE YOU HAD A VERY HAPPY ONE!

Much love and thanks to all,

Lana