My trip into Midland International was quite funny cause Mom was wheeling me around the luggage check-in and ran me into about 3 poles. The lady that took me up to the top floor mentioned to me going up it looked like she was having a rough time there. I was just laughing because it kept happening over and over. Love ya Mom..but never again will you be in charge of wheelchair duty. And I'm sure you're perfectly happy with that! HEE HEE! Our Flight in was interesting. We had to go from Midland International to DFW to O'Hare in Chicago then to Rochester, Minnesota. We got to board first because I was considered handicap so that was a good thing. Our flights were okay..just a lot of moving and grooving while trying to change planes.
Chubby people in coach is not fun..BAHH HAA HAA!
We have arrived!
I thought this was a funny tower. Later we learned that it was A ballistic, custom-designed water tower, painted like a huge ear of corn. Part of the old Libby Foods facility, now Seneca Foods.
Day 1 at Mayo-
Monday I met with the neurologist they assigned me. He was an interesting fellow from Canada. We went over my medical history and he was sort of interrogating and intimidating, at first. I was extremely nervous because you know, not having a diagnosis anywhere else makes you so leary going into other appointments. I didn't think I would like him..but once we got more into the appointment, I liked him more and more. I guess two years of all the things I have been going through caught up with me cause I broke down and bawled like a big baby. I settled down, told me that I have been through quite a lot and it really is stressful and he assured me that things will be all right that we will try to get to the bottom of everything. He did a neurological exam that was way more extensive than I've ever had. And then did some memory test, in which I flunked...UGH! That was a bit depressing. He then ordered some other tests to be done throughout this week and I am to go back and see him when all tests are finished and I see the other specialists. He then sent me to have some labs run.
They have a free shuttle bus that picks you up from hotel and drops you off at various places around town. Walmart being one of them so we, of course, had to make a Walmart run. HA!
Day 2 at Mayo-
Tuesday I met with the neuro-opthalmologist they assigned me. I had about three other women go over things that have been happening with my eye and running basic exams and then I was dilated (oh what fun!) and the neuro-opthalmologist came in and examined me. She seemed kind of perplexed as to why I have that smudge in the peripheral of my left eye. She kept saying and talking about how my right eye was more droopy..so she took measurements. I asked her about the optic neuritis and she said that optic neuritis usually only lasts about 6 months and then should go away. She has requested that I go and do quite a few visual tests and have many eye photos taken because she wants to know what is going on with the peripheral. She did mention something about maybe having a retina leak of blood or possible stroke, especially since I did have all of the other neurological problems. So I'm scheduled for more visual testing and then will see her next Monday for followup.
My next appointment was with a Physiatrist. This is a rehabilitation physician. I did not even know these existed. He did an exam to see how much I was able to do and watched me walk. He was a delightful family-oriented doctor. He told me I have a wide gait or walk, more so probably because of the unsteadiness. This might be caused from my visual changes over the past two years. Possible from wearing that boot for the plantar fasciatis two years ago, or even because of the neurological problems I'm experiencing now. And that I'm unsure because I'm afraid of falling because of balance. He recommended that I do a program here at the Mayo or possibly back home (if available) called Functional Gait Restoration Therapy...which is basically retraining your brain to help you walk normal again. He said that most physical therapists do not know how to perform this type of therapy but said that Mayo is one of the few clinics that performs this and believes wholeheartedly in it's results. It consists of a week-long schedule of training twice a day, which breaks you out of your habits that you have formed, almost like teaching a child how to walk. He told me I was limber..more so on my right side (which was awkward when you have your legs sticking up in the air..HA HA!) I really enjoyed our appointment and he then referred me to see a physical therapist and wants to hear about what is going on, if anything, neurologically.
Mike already exhausted after all the wheeling and waiting around during appointments and tests! At least he had the courtesy of NOT snoring! HA
My next appointment was to see a physical therapist, in which he performed some basic movement tests, watched me walk, did some resistance tests, and then went over exercises and stretching I can do myself at home to make me more flexible (as if I need this..HEE HEE..just kidding) and get my muscles strengthened. He also, highly recommended that I do the Functional Gait Restoration Therapy. He told me that it has helped people immensely retrain themselves and live more productive lives.
Then to finish off the day, I had an EEG (Electroencheplography) test performed. It is basically to test for seizures or epilepsy. I had to go in sleep deprived so they only let me sleep four hours the night before. Talk about long day! The technician was very chatty and very nice, which made it go by quicker. It was way different than the one I had performed at my neurologist's office in Odessa. WAY more advanced. I was hooked up to leads (not very fun cause she has to press down on them with a pin to make sure they stay attached-VERY uncomfortable). I had to try to sleep for 30 mins and then wake and she asked me questions, read some things, and had to do a hyperventilation exercise to raise my heart rate. She then did the strobe light feature (FUN FUN). I did not have any seizures during (thank goodness). I did tremor more than usual. It was quite a long and exhausting day because of the sleep deprivation but I made it through. We took a nap and enjoyed nice dinner in our hotel room. You'd be surprised at how creative you can get with microwaveable food. We had a rotisserie chicken, some steamed rice, and green beans..all picked up from Wal-Mart. Eating out can be very expensive..so we picked up several items from Walmart on Monday morning to eat in our room. We took a complimentary shuttle bus that takes your to Walmart and then brings you back to your hotel. It's really convenient and nice how everything is laid out and planned around here. Very accommodating to everyone!
Day 3 at Mayo-
Wednesday Woke up to snow this morning. It was lovely because we didn't see much of this this year in Texas.
First appointment of the day was meeting with an Occupational Therapist. She was wonderfully sweet and I really learned a lot from her. We worked on deep breathing exercises for my anxiety or even when I'm stressed out. This is going to help tremendously. I never knew how to formally relax and how much it benefits our bodies. Because of my back pain and my struggles to get around..she showed me ways of doing general house chores. I found out the majority of us do chores ALL wrong. HA She showed me how to do dishes, laundry, and sweep/mop. She told me (because I'm a side sleeper) that the best thing needed for comfort to back is a pillow between my legs at night. Because I turn side to side a lot and don't want to get wrapped up in covers, I got a small contoured pillow that fits between my knees to align my back the way it's suppose to be at night. She was extremely helpful and I really appreciated all of her tips and tricks.
My second appointment of the day was an Evoked Potential Test. An evoked potential test measures the time it takes for nerves to respond to stimulation. The size of the response is also measured. Nerves from different areas of the body were tested. I had to be hooked up to electrodes again (similar to yesterday) to a machine. Then they stick you in front of this tv screen which shows a checkered pattern with a center dot and you have to stare at it for several minutes while it does all it's computing. The lady who did this test was younger and less gentle. Didn't try to the glue out of my hair. So I wasn't very pleased with her. But it only lasts about 30 mins.
My last appointment of the day (the one I've been dreading)..was the EMG. Electromyography is a diagnostic procedure to assess the health of muscles and the nerve cells that control them (motor neurons).
Motor neurons transmit electrical signals that cause muscles to contract. An EMG translates these signals into graphs, sounds or numerical values that a specialist interprets.
An EMG uses tiny devices called electrodes to transmit or detect electrical signals.
During a needle EMG, a needle electrode inserted directly into a muscle records the electrical activity in that muscle.
A nerve conduction study, another part of an EMG, uses electrodes taped to the skin (surface electrodes) to measure the speed and strength of signals traveling between two or more points.EMG results can reveal nerve dysfunction, muscle dysfunction or problems with nerve-to-muscle signal transmission.
This was the most painful procedure thus far. OMG..I was jumping off the table at some points. It's done in two different sessions. It shocks your mucles basically and so my body was not relaxed whatsoever. I had to lay there for about 20-30 mins afterwards waiting for the 2nd part and I had muscle spasms like crazy. It was totally annoying. The 2nd part hurt pretty bad. The needles they use looked like longer acupuncture needles to me. The doctor that did this was as gentle as he could be for this type of test..but puncturing your muscle could possibly be a tortune technique for sure. HA! But I got through it. My legs and arms are really sore..and side of hip where they were placed..and he said I will probably have bruising that will appear.
We made another Walmart run since I found out I have to be here until next Tuesday or Wednesday for sure. We have saved a ton of money eating in our hotel room and cooking via microwave..HA! Tonight on the menu was Chicken Florentine Farfalle with Spinach and Garlic breadsticks. Delicious really! I made out a menu, as I do when I'm home cooking, and we went from there. I bet Mike is going to lose 20 lbs on this trip wheeling my big booty around in a wheelchair. It's a long walk between appointments..but I'm so glad they have the subway areas between everything because the weather was gloomy, rainy, and cold today. It's suppose to snow here tomorrow. So we'll see! :)
Day 4 at Mayo-
Thursday Today was quite productive..as how all week has been, as well. Started off this morning at 7:45 appointment for a neuropsychological assessment. It was a test of memory and thinking. VERY challenging to say the least and it was FOUR hours long...very tiring, too! It was definitely interesting..found out that I am smarter in areas than others.
The rest of the afternoon consisted of eye appointments. I had to have a Visual Field test and a manual (old school type) acuity check. I was told by the technician performing it that she was doing it manually versus machine because my doctor wanted more of a peripheral view since that is where my problem area is mostly. After this, I had about a three hour block of eye photography. This was basically performed in three different rooms and by three different types of machines. I had one photography test which was very similar to an MRI contrast dye of my eye. There were a TON of images taken so I am really hoping my doctor will be able to figure it all out. I find out on Monday what she suspects and hopefully she can give me a diagnosis and treatment plan. We came back to the hotel afterwards and rested. We face timed Zoee.
She was being really silly and we can't wait to get back home to her. Mom told me she was upset after seeing and talking to us. Dad had bought her a Barbie, which he laid up for her to be able to see and touch..but not open earlier in the week. He said if you act good, then you will be able to have it. So she's been looking at it every day. Well, after we face timed her and she began crying he went over there and handed her the Barbie and my Mom asked, I thought you weren't going to give it to her til the end of the week. He said, "she just misses them". Such a softy! Zoee is sooo spoiled by them. She's been having a great time with them..taking good naps during the day..and learning a lot from my Mom.
Tomorrow through Sunday is rest and relaxation. It's been one tough week for both of us. We're going to do some sightseeing around downtown..so be sure to check back for pictures tomorrow.
A crazy picture of my eyes still dilated about 5 hours later. Sheesh!
Day 5 at Mayo-
Friday We had a free day today because most of the testing is already over and it seems as if doctors and appointment specialists try to squeeze everything in during Monday through Thursday. This was fine with me because both Mike and I were exhausted from the past four days. Having fatigue and trying to run from appointment to appointment is not my idea of fun by no means. Like I said before, I'm just glad Mike was here with me to push me around and for the emotional and mental support that I needed this week to get through all the non-pleasing tests. I found out today that my schedule was changed up a bit for next week because some of the tests -the acuity check and more photographs have to be redone or more of them taken. I guess the doctor looked over them and decided she wanted more or I'm thinking maybe she saw something. I don't know. I am suppose to see her at 8 am on Monday so, of course, they squeezed those tests in for 7 am and 7:30 am on Monday before seeing her. UGH! Glad we have the weekend to rest, as well, because Mayo is not open.
Day 6 at Mayo-
Saturday Because it's not open on the weekends..people have to find things to do over the weekend here in Rochester. Rochester is a great town we've come to find out. It's population is about probably around 110,000 people. It's a city rich with all kinds of art and music and a great historical background. There is quite a bit to do downtown and lots of water areas, but that doesn't surprise us, because Minnesota is known for being the state with 10,000 lakes.
We decided to get out and about today as much as we can since we've been cooped up all week at the Mayo. They have a quaint and fun little hour long trolley ride around Rochester where we are showed and told all about the historical background of Rochester. Here is a bit of the historical background. If you're not wanting to know about any of this..go ahead and feel free to scroll down from here. HA!
As Rochester was growing into a substantial city, elsewhere in the country the American Civil War was raging on. Nothing unique to Rochester occurred as a result of the war, except that the city received Dr. William Worrall Mayo as a medical examiner of Civil War recruits. He had arrived in 1863, and built up a practice throughout the entire southern portion of the state of Minnesota during and after the war. He had two sons, William and Charlie, who would accompany him on medical calls when they were old enough. They eventually became doctors as well, and used their skills to the fullest.
On August 21st, 1883, a tornado swept through the north side of town, killing and injuring many people. Dr. William Worrall Mayo was a key player in rebuilding Rochester, knowing that people would leave if they were not well-cared for. Dr. Mayo and his sons, along with the help of Mother Alfred Moes and the Sisters of St. Francis, set up a system to care for those injured during the crisis.
As the town was beginning to recover, Mother Alfred Moes proposed building a hospital to the Mayos. Although not enthusiastic at first, the hospital was eventually started. The first seeds of the Mayo Clinic were planted as St. Mary's Hospital was created. In 1901, Dr. Henry Plummer joined the practice at St. Mary's, bringing many advancements in technology and patient care. This team soon formed the organization known as the Mayo Clinic. Parts of this history still remain in Rochester today. Dr. Charlie Mayo's home, Mayowood, and Dr. Plummers' home, the Plummer House, are available for special events and tours. Dr. Will Mayo's mansion is home to the Mayo Foundation.
Mike and I really enjoy learning about historical events or people so this was really fun for us. Here's a few pics we took while on the tour.
We boarded the trolley tour.
The oldest brick home in Rochester. It is still used as an actual residence to this day.
St. Mary's Hospital is still in use and a mile from where the Mayo Clinic was built in the 1950's.
William Worrall Mayo
President Abraham Lincohn appointed William Worrall Mayo as the physician responsible for giving physicals to young men before joining the Union army because every young man needed approval before joining. He said that he was not a farmer but an agrilculturalist. When asked the difference he said that farmers make money on the farm to spend in town and an agriculuralist makes money in town to spend on building a farm.
The two Mayo brothers, Charles and William Mayo
This is Mayowood Mansion. The Mayo brother, William, an active agriculturist, bought 3,000 acres of land and eventually built 6 farms on his land. This picture above is where his racetrack used to be which is now a soybean farm.
Mike and I on the trolley.
A picture of Dr. Plummer. He was a Physician, scientist, architect and engineer, Dr. Henry Plummer has rightly been called "a diversified genius." He joined their team of doctors and Dr. Mayo said often one of the best things he had done was to hire him. He has invented many of the medical equipment and practices we use to this day.
We drove down the road that William Mayo took every day to get to town in his Ford given to him by Henry Ford. Dr. Plummer also had a Ford model vehicle. There are so many famous people that have been treated at the Rochester, Minnesota Mayo Clinic including, Will Rogers, President Franklin D. Roosevelt, The Bush family, many political from Mexico, and even the Iranian Leader in 2011.
The homes in Rochester are really beautiful. Mostly Victorian-looking like this one. A lot of people out walking their dogs. Mostly bigger dogs like Labs and Golden retrievers. Very friendly waving as we went by.
I am so glad we got to get out and about today. It was lovely weather and so refreshing getting out and about. I love that most everything around downtown has free transportation to other areas around town so you are able to see most of Rochester by taking the free shuttles. We went to the Apache Mall. It's a smaller one..a little bit bigger than Midland/Odessa's mall and Mike wheeled me around. We noticed that there are a TON of kids in Rochester and most have about 2-4 kids a piece and some even one on the way. A lot of pregnant women. We have also seen this week a monk at WalMart (I've never actually seen one in person..so that was interesting to me.) We've met a lot of very friendly people. One lady we were giving directions to stopped us in the middle of the Mayo Clinic and asked if she could pray for me and my family. I told her yes and we stopped dead tracks in the middle of the corridor and she started to pray. It was soo sweet and geniune. I told her I have many people praying for us and she asked for God to bless all of you, as well. Sweet people here from all over the United States and world. We even met a couple on the plane ride over from Honduras. So people do truly come to Mayo for the best medical care.
Tomorrow, we will rest completely and get ready for a new week. I am praying that I get some answers on Monday and hopefully a diagnosis/treatment plan. I also hope that I can find out when we will be able to come home. Rochester has been good to us so far, but we miss Zoee sooo much.
Day 7 at Mayo-
Well, it's been a complete week since we arrived. We didn't do a whole lot today. Rested as much as we could. We did some laundry and watched The Hobbit. We both took a long nap (odd for us to get some good nap times in). Mike made another microwaveable meal tonight for dinner and we watched a great Hallmark show. (Well, Mike was tortured by watching it with me..I'm sure he would say! HEE HEE!) 7 am is going to come really early tomorrow. That's what time I have to be at my first appointment..so hopefully I'll be getting some answers this week and will be able to come home.
Day 8 at Mayo-
This morning started extremely early. We had to be at an appointment at 7 am. They had to redo an acuity eye check and then take one more photograph of my eye they had missed yesterday. I then met with my neuro-opthalmologist. I have mixed feelings about our visit together. She went over all the eye photography I did and tests I did of my eyes. She basically told me that I do not have optic neuritis. I'm confused about this because the last two neuro-opthal docs have told me I did have it. She said..I do not know why they would say this..because you do not have it. It's usually something that is seen early on and goes away early. She did however show me something she found on some of the photographs of a grey area that is found in the exact spot of where I'm unable to see. She told me that she believes it's something wrong with my retina. Because retinas are not her speciality she told me I would need to see a retinologist. Of course, they are totally booked up for over a month for me to be able to see them here at Mayo. UGHH!!! So she recommended that I come back in 6 months to see the retinologist that she conferred with about my photographs (which means to come back to Mayo) or to see one closer to home. So this is why I'm kind of having mixed feelings. I do now know I do not have optic neuritis..but something is definitely wrong and I will have to see yet another doctor to see about it. :(
My second appointment was with a psychologist. He was an older man...could tell he had several years in his practice. He was awesome really. I really enjoyed talking with him. We spoke about my anxiety and also about my Post Traumatic Stress Syndrome because of the wrecks I have been in. I won't reveal everything...but he advised that I do need to seek help in Odessa/Midland with a Cognitive Behavioral therapist and to also use the relaxation techniques that I had been taught by the occupational therapist I had seen earlier last week. He is also sending me to take a questionnaire on a computer tomorrow that will give him some more insight on the ways I think..etc..
During my psychology appointment, I received a phone call from my neuro-opthalmologist that my neurologist was ordering some more blood work to be taken and also need to go and have a CT scan done of my chest. She only mentioned something about checking for an infection..but didn't say what kind. That was a little unnerving. We are going tomorrow morning at 7 am to see if I can get into see my neurologist earlier than Wednesday. The suspense of everything is killing me to know what is going on after all of these tests. It's not guaranteed that I will be able to get into him tomorrow..but it's worth a try as a checker. That means going in and actually sitting in the waiting room to see if they can work you in earlier. I am praying I get some answers!
In between waiting for appointments, we found a museum they have in the Mayo Building about past and present. It was really neat. I took some pics I'd like to share with you.
Day 9 at Mayo (FINAL DAY...YEA!)
Well, this is my final day at Mayo. I woke up really early this morning and had a non-epileptic seizure again. UGHH! I don't know if I'm stressed cause the end is drawing near or scared to hear what the results will be. I had to do one more psych test today. It was a true/false questionnaire made up of 568 questions. It took me a while to finish it. I have learned so much about myself this week through visiting with the psychologists and all these psych tests.
I then went to see if I could get in to see my neurologist early because I really wasn't scheduled until Wednesday to see him. He worked me in. He went over all of my results from last week and this week's tests. I was so anxious! I had many questions for him. My diagnosis went as follows:
1. Left-sided focal chorioretinitis
2. Functional Gait disorder
3. Numbness or paresthesias, without peripheral nerve disorder
4. Non-Epileptic Seizure Disorder
5. Memory concerns
6. Polycystic Ovarian disease
8. Rash, Intermittent
9. Retinoschisis in Left eye
10. Visual Disturbance
11. Defect Pupil Afferent
12. Deficit Cognitive Non-psychiatric
14. Post Traumatic Stress Syndrome
15. Back Pain due to disc problems
Seems like quite a lot..but most of these contribute to each other in a nutshell. I have to make a plan. First and foremost, I have to get into see a retinologist. Here at the Mayo, they do not have retinologist appointments available for a couple of months. That is how busy they are or I would of seen one here. So if anybody knows of any good ones around this area, please let me know. I think I am going to look in the Lubbock area, as well. I have to find a psychologist for my anxiety, post traumatic stress syndrome, stress for some cognitive behavior therapy. I didn't realize how important your psyche really is until this week and how much it affects your life. I need to seek someone close by who knows how to do functional gait restorative therapy. This will train me how to walk normally again. I was told that the non-epileptic seizures are stress induced..so as soon as I get the therapy going..this should help with this and hopefully possibly go away. I have been dealing with polycystic ovarian disease for years and years. This is why it took me so long to get pregnant. I've had hypertension since the end of my pregnancy with Zoee. I do not have any nerve damage. I have post traumatic stress syndrome from the previous wrecks I had years ago. Still dealing with the repercussions of not dealing with it back then. This is why I freak out when riding with people and sometimes while driving. And I will then need to see a dermatologist for some skin rashes I get and some other skin problems going on. As for everything else..he said just de-stress my life as much as possible and rest when I can so the fatigue won't become greater and make the tremors and muscle spasms comes back or continue. They have also tested me for a few other tests such as West Nile and Tuberculosis that haven't come back yet..so I should be hearing the results of that soon. These all can cause Sarcoidosis, which can lead to the eye problems I am having. All my other labs came out fine. No lyme disease. As seen on my MRI of spine..I have some disc things going on so if I continue to have the back pain, I will need to seek a specialist for that, as well. It's been a stressful but fulfilling week. I still have a very long journey to go medically..but at least I'm on a great starting path, whereas, I was not getting the right answers or going anywhere from doctors in Odessa/Midland.
Tomorrow, we are flying home. YEA! We finally get to see our precious lil' Zoee and family. We cannot wait. Staying 10 days away from home without my daughter is enough for me. Mike misses her terribly! We are taking a little bit different route back home..with less travel..so hopefully it goes just as smooth. Thank you so much for your prayers throughout all of this. All in all, it's actually great news. No MS ..Praise God! Please continue to pray for us and we will pray for you, as well. I am completely satisfied with how everything was handled at Mayo Clinic. If any of you are having major health issues I urge you to seek their help..it will definitely be worth your while. I'm praying that I can get some things taken care of and go on with life as normal...or as normal as it can be..HA HA! Love and HUGS!
And you know me with pictures..I'm sure I will post a few more on our travels back home. We get to go up to Minneapolis/St. Paul to leave out of their airport..so that will be a little exciting seeing a new place.