This, the final entry in the Mayo Clinic Adventure blog, is exciting to write. In summary, Leslie does NOT have MS. She has Severe Obstructive Sleep Apnea. She also has RLS. Both of these conditions are treatable.
For her sleep apnea, she has a breathing machine that helps her get the best sleep she has had in a long time. The RLS is managed with medication and when she takes it according to plan, things go well for her.
There were some highlights of our trip like getting to spend some quality "alone time" together. Also, getting to see relatives and new sights. Overall it was a good trip. We are glad we were able to get answers. Too bad we had to go all the way to Mayo to get them.
Thanks to all of you for your support, prayers, support and prayers.
Sunday, August 18, 2013
Sunday, July 14, 2013
Weekend Update
We have realized that Rochester, MN is pretty boring on the weekends. We had a lovely Sunday breakfast at a place called Pannekoeken. That's Dutch for pancake. It was like an eggy pancake that was baked rather than done on a pan on the stove. I had one with bacon in it. Not too bad. Leslie had one with fresh cut strawberries on it and a sour cream/brown sugar glaze. That was good too.
Apparently the town shuts down on the weekends because there are no patients at Mayo. There ARE things to do though. There is something called Pedal Pub, which for 350 for a group of 8 for 2 hours will allow you to pedal a bar through the streets of Rochester. There is a keg of beer on board so it looks like fun. The 350 is enough to keep us on the ground though. There are also Segway tours but 40 for 2 hours is a bit more than we want to pay.
We did meet nice people the other night from North Dakota. We are meeting them tonight in the bar for happy hour at our hotel bar.
Please pray that when we get to the 17th floor of the Gonda Building tomorrow at 7:30am, someone has cancelled and they have an appointment for us. Thank goodness our hotel is nice.
Yesterday's trip to the Mall of America was sorta fun. I can't believe that I spent 4 and a half hours in a friggin' mall. The highlights for me were riding on the roller coaster and getting a cheap pair of shorts from the Macy*s.
Apparently the town shuts down on the weekends because there are no patients at Mayo. There ARE things to do though. There is something called Pedal Pub, which for 350 for a group of 8 for 2 hours will allow you to pedal a bar through the streets of Rochester. There is a keg of beer on board so it looks like fun. The 350 is enough to keep us on the ground though. There are also Segway tours but 40 for 2 hours is a bit more than we want to pay.
We did meet nice people the other night from North Dakota. We are meeting them tonight in the bar for happy hour at our hotel bar.
Please pray that when we get to the 17th floor of the Gonda Building tomorrow at 7:30am, someone has cancelled and they have an appointment for us. Thank goodness our hotel is nice.
Yesterday's trip to the Mall of America was sorta fun. I can't believe that I spent 4 and a half hours in a friggin' mall. The highlights for me were riding on the roller coaster and getting a cheap pair of shorts from the Macy*s.
Saturday, July 13, 2013
The Life of a Checker
Since the neurology department said that Leslie does not have MS (Thank God!), they thought that she may have a severe sleep disorder. "A sleep disorder with symptoms as severe as what Leslie has experienced?", you may ask. Yes. Apparently, there are varying degrees of sleep disorders and to get the symptoms that Leslie has been having, her case must be severe.
On Friday, we started our new career as checkers. What that means is that we have to go to the Sleep Disorder center at 7:30am and check in. If there is a cancellation or someone does not show up by 11:15am then they may call our name and we get in to see a specialist. At 11:15am, we are free to go have lunch and go back to our hotel to rest but we need to be back to the clinic by 1:30pm. We sign in again and hope that there is a no show.
On Friday, we got there as soon as we could in the morning and waited and waited. Leslie passed the time playing on her i-pad and I passed the time watching Netflix on my nook tablet. Mayo has free wi-fi. In the morning session, we did not get called. And were dismissed at 11:30am for lunch.
We were back there at 1:15pm to wait for our chance. At 2:15pm, our name was called. We were so excited! When we got to the desk, we were told that all of the PM appointment people showed up and we were sent back.
We are already on the list for 7:30am Monday morning. Can't wait!
On Friday, we started our new career as checkers. What that means is that we have to go to the Sleep Disorder center at 7:30am and check in. If there is a cancellation or someone does not show up by 11:15am then they may call our name and we get in to see a specialist. At 11:15am, we are free to go have lunch and go back to our hotel to rest but we need to be back to the clinic by 1:30pm. We sign in again and hope that there is a no show.
On Friday, we got there as soon as we could in the morning and waited and waited. Leslie passed the time playing on her i-pad and I passed the time watching Netflix on my nook tablet. Mayo has free wi-fi. In the morning session, we did not get called. And were dismissed at 11:30am for lunch.
We were back there at 1:15pm to wait for our chance. At 2:15pm, our name was called. We were so excited! When we got to the desk, we were told that all of the PM appointment people showed up and we were sent back.
We are already on the list for 7:30am Monday morning. Can't wait!
Wednesday, July 10, 2013
Good News and Other News
This morning we woke up and took advantage of the free breakfast at our hotel. We then got ready for our day. We decided to go over to Mayo and scope it out and see what it was all about. The place his bigger than we thought. We walked around and walked and walked. I suggested that we go up to the area where Leslie's appointment was. When we got off the elevator she was so nervous and scared that she wanted to leave, so we left.
As we were later relaxing in our hotel room, she received a cal from Mayo asking her to come in right then for her appointments. To keep a long story short, she does NOT have MS. YAYAYAYAYAYAYAYAYAYAAAAA! That's the good news.
The other news is that both neurologists who saw Leslie, believe that she has a severe sleep disorder. Now, all of our appointments and diagnosis work will be toward that.
We will keep you posted!
As we were later relaxing in our hotel room, she received a cal from Mayo asking her to come in right then for her appointments. To keep a long story short, she does NOT have MS. YAYAYAYAYAYAYAYAYAYAAAAA! That's the good news.
The other news is that both neurologists who saw Leslie, believe that she has a severe sleep disorder. Now, all of our appointments and diagnosis work will be toward that.
We will keep you posted!
Tuesday, July 9, 2013
Greetings From Madison
After a refreshing night at the Rockford Hilton Garden Inn we set off early for Mayo. Quick breakfast stop in Madison for a good old fashioned Denny's Breakfast. Mayo is coming up fast. Will check in after we check in at our home for the next 2 weeks. Hopefully everything will continue to go well. Breakfast just arrived, TTFN.
Saturday, July 6, 2013
Antici.........................................................pation!
As my work day came to a close last evening, my nerves started to kick in a little bit. Ran some trip related errands. I called our hotel and made sure everything was set. I stopped by the rental car place and made sure our reservation was set and the car we reserved would be there. Did a little banking too.
At home, Leslie has been washing clothes and getting things ready. We scanned in over 200 pages of Leslie's medical records to archive. I think that it will be crazy tomorrow because then it will be the night before. We will need to make sure that everything is ready to go and packed.
It would be nice if we could take the kids but we know they will be in good hands with grandparents.
At home, Leslie has been washing clothes and getting things ready. We scanned in over 200 pages of Leslie's medical records to archive. I think that it will be crazy tomorrow because then it will be the night before. We will need to make sure that everything is ready to go and packed.
It would be nice if we could take the kids but we know they will be in good hands with grandparents.
Tuesday, July 2, 2013
Who Whould Have Thought.....
I have learned that preparing for a visit to The Mayo Clinic in Rochester, MN is like taking on a part time job. Getting the appointment was the easy part. Getting ready for it, not so much. Mayo says to plan on 7 to 10 business days for a typical visit.
Hotel? Check! Leslie wanted our hotel to be one of the ones attached to Mayo so that we would have easy access to and from the clinic. We found one and booked it.
Rental Car? Check! Most people would probably not need a rental car but, my good old pick up truck is not the best choice. Our van would be great, BUT it is up there in age too and it would be bad if it malfunctioned on the way. Rental car, next best option.
Medical Records? Almost check. Mayo requested that we hand carry Leslie's medical records to our appointments. We had to make a list of all the doctors, labs, imaging centers, hospitals, etc.. where Leslie has been seen. Thank goodness we have a home fax. Basically it was a matter of calling the office, having them fax the release form, filling it out and faxing it back. Of course, all of the records were not available at the same place at the same time so we waited until they were all ready for pick up. Sure we had to go to at least 6 different places all over town but except for one place who had to mail them to us and one we had to wait a day before we could pick up.
Now it is time to pack and gear up for the trip.
I have been coordinating all of this with Mayo so that Leslie could focus on completing her last class toward her MA credentials. When we return from Mayo she will start her externship. I have been fielding at least 1 phone call from Mayo a day about this that or the other things needed before our visit.
Hotel? Check! Leslie wanted our hotel to be one of the ones attached to Mayo so that we would have easy access to and from the clinic. We found one and booked it.
Rental Car? Check! Most people would probably not need a rental car but, my good old pick up truck is not the best choice. Our van would be great, BUT it is up there in age too and it would be bad if it malfunctioned on the way. Rental car, next best option.
Medical Records? Almost check. Mayo requested that we hand carry Leslie's medical records to our appointments. We had to make a list of all the doctors, labs, imaging centers, hospitals, etc.. where Leslie has been seen. Thank goodness we have a home fax. Basically it was a matter of calling the office, having them fax the release form, filling it out and faxing it back. Of course, all of the records were not available at the same place at the same time so we waited until they were all ready for pick up. Sure we had to go to at least 6 different places all over town but except for one place who had to mail them to us and one we had to wait a day before we could pick up.
Now it is time to pack and gear up for the trip.
I have been coordinating all of this with Mayo so that Leslie could focus on completing her last class toward her MA credentials. When we return from Mayo she will start her externship. I have been fielding at least 1 phone call from Mayo a day about this that or the other things needed before our visit.
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