AKmom
Senior member
- Joined
- Jun 2, 2010
- Messages
- 608
- Reason
- DX UMND/PLS
- Diagnosis
- 11/2009
- Country
- US
- State
- Alaska
- City
- Wasilla
Ok I am back from the Mayo Clinic Florida. I am going to start at the beginning and hopefully make this an interesting story. First off, thank you to those who prayed and thought of me during this time and those who pm'ed and those who wrote on my page asking how I was doing. Your support ment alot to me and did help me through emotionally.
Our trip started out by going to Anchorage airport for our flight that was scheduled at 5:45pm to take off. When we went to check the luggage in, we were told that we were bumped from our flight and scheduled on a red eye, which in turn would make us miss the only flight out of Seattle to Orlando and we would then have a 8 hour layover and not get into Orlando till Sunday evening. Well obviousely this was not going to do. They did not notify us of these changes because the Alaska airlines computer system crashed that day, which was why everything was messed up! So with insistance of my hubby John, we got them to change our flight to one that was to leave already, but was two hours late. And with the help of the wheel chair attendent we managed to get to the plane just as it started to board those that need assistance. Perfect. We got out ahead of schedule for us.
In Seattle this plane we got off of, all the sudden became the flight we were to get back on for Florida. Perfect!
We got the rental car and drove to Jacksonville. We stayed at the Marriott Residence Inn in Baymeadows. Not the one at the hospital. This saved us $70 a day and we got all the benefits that the Mayo Marriott was claiming. Breakfast and dinner if we wanted, plus all the internet time was free. Very nice rooms with kitchens. The beds were not bad but too hard for me. But then I have yet to find a bed that is comfortable to me.
At the Mayo I talked to the doc they assigned me too. She was very young, must have been her late twenties early thirties. She was new to Mayo too. Not even listed as a doc there. She took a history and did neuro tests for weakness, which was obviously found. She then told me the tests she was going to order but wanted another neuro muscular doc to check me. The other doc came in and did some of the same basic strength tests and ordered some additional tests to the list.
So my tests were:
So here is what she said. First she said that none of the tests show any evidence of why I have clinical weakness. She said that the MRI of my head showed some changes that would indicate one of the following:
She said the MRI of the spine showed that I have mild arthritis in the facits of my low back, and that I have a bulging disc in the low back that is very mild and not impending on my cord. She also said there were two bulging discs in my neck but again they were not serious enough to be of concern. Non of these results are the cause of my problem according to her. The good news was that the stroke I had back in 04 no longer shows on the mri. So apparently it has healed. I wasn't aware that a small stroke damage on an mri could go away but praising God it has!
She said the EMG and nerve conduction test are fine. Although I must note that when they were doing my right foot (they only checked my right side btw) they had to keep redoing the shock one because at 10 they would get the first signal but then it would show nothing on any other signal. This happened when the neuro doc did the emg here in Alaska back in 09. They finally decided it was because the muscle on that foot is in a permanent tight cramp which is causing the foot to turn in.
She said all blood work that has come back is fine and that she suspects the ones that were sent out were going to be fine too. She said the peliminary spinal tap was fine and she suspects the other tests of the fluid will be fine too when they come back.
She said she does NOT know why I have clinical weakness and stiffness. I asked her specifically if she thought it was PLS. She said no its not pls. I asked what ruled out the pls? She said that they did not find any changes on the emg or mri to indicate pls.
She said she could not give me any diagnosis (I did not type in the ALS before that word, this is done automatically by this site, irritates me but I am not going to keep editing these things out when I type in ALS diagnosis.
Now, she did start to say that she thought it was my complex migraine disorder causing all this and I should go on a migraine medicine. I protested and reminded her that the symptoms of the weakness/falling started before the migraines started (which was after the car accident) and that the migraines have been delt with already. I only get a migraine about once every 3 or 4 months if that much!
So because I protested and reminded her of some of the symtoms in which she had a detailed history that I had typed out and given dates and everything, she then changed and said that it could be a rare form of dystonia, but it would have to be hereditary and found with a dna test. I told her that I had a dna test when I was pregnant the last time (due to a doc who insisted that it be done) and that test did not show any markers of anything wrong with the dna. She said that the rare form could be that I am the first in the family to get it. She suggested I take a med that is used for dystonia and if it works and improves things then it most likely is dystonia I am suffering from. I looked up dystonia after talking to her and it doesn't sound like my problem at all!
So she has not given me any ALS diagnosis. She wants me to go to physical therapy (physiologist doc). I feel she has ignored 3/4's of the things I have told her. The only reason I am not in a wheel chair is because of my relentless drive to stretch and exercise to keep things moving. The contractures I am getting is going to happen because of the constant spaticity. But being a soccer coach for 16 years and going to training on injuries and treatment of injuries, has taught me enough to keep me moving now. I am not sure I want to throw anymore money to a pt who will show me the same things I already know.
I asked if she thinks I am taking any meds I shouldn't be. She looked at the list and said that they all should be bennificial to me. I find this incredible that she was not willing to come up with a ALS diagnosis of anything. Am I wrong in stating the mri's and emg's cannot rule out pls? If anything they make the case for pls all the more don't they?
I even asked her if she thought it was a mental thing. She said no she didn't believe it was. She did ask me if I was under stress. I told her no, the only stress in my life is that I am loosing ability to live my life the way I choose to live it! That is the only thing I stress about and I have coping skills that have helped me to move on when I can but quite honestly, its frustrating to find another ability that I have lost. She didn't say anything to this.
So I am left with the same problems as before...only about $10,000 in the red now. This has been an ordeal and I should have gone with my first instinct of fighting for getting more experienced doc. I have lost respect for most medical professions when it comes to them trying to figure out what seems to be pretty clear to me. But for an institution that claims to be able to figure out medical puzzles, to roll over and play the "I don't know" game with me has really made me angry. I got sucked into another money and time wasting scheme!
As for the flight back, we sat on a plane in Orlando 3 hours before it finally took off (do to weather). That made us miss our connecting flight in Seattle, but we were able to get on a flight and had enough time to eat dinner in Seattle airport. So not so bad. We were only 5 hours later than originally planned for landing in Anchorage.
Congrates if you got through all this post!
Our trip started out by going to Anchorage airport for our flight that was scheduled at 5:45pm to take off. When we went to check the luggage in, we were told that we were bumped from our flight and scheduled on a red eye, which in turn would make us miss the only flight out of Seattle to Orlando and we would then have a 8 hour layover and not get into Orlando till Sunday evening. Well obviousely this was not going to do. They did not notify us of these changes because the Alaska airlines computer system crashed that day, which was why everything was messed up! So with insistance of my hubby John, we got them to change our flight to one that was to leave already, but was two hours late. And with the help of the wheel chair attendent we managed to get to the plane just as it started to board those that need assistance. Perfect. We got out ahead of schedule for us.
In Seattle this plane we got off of, all the sudden became the flight we were to get back on for Florida. Perfect!
We got the rental car and drove to Jacksonville. We stayed at the Marriott Residence Inn in Baymeadows. Not the one at the hospital. This saved us $70 a day and we got all the benefits that the Mayo Marriott was claiming. Breakfast and dinner if we wanted, plus all the internet time was free. Very nice rooms with kitchens. The beds were not bad but too hard for me. But then I have yet to find a bed that is comfortable to me.
At the Mayo I talked to the doc they assigned me too. She was very young, must have been her late twenties early thirties. She was new to Mayo too. Not even listed as a doc there. She took a history and did neuro tests for weakness, which was obviously found. She then told me the tests she was going to order but wanted another neuro muscular doc to check me. The other doc came in and did some of the same basic strength tests and ordered some additional tests to the list.
So my tests were:
- bloodwork
- 24 hour urine collection (have no idea why)
- EMG, NCS (nerve conduction study where they use the needles)
- MRI of the brain and complete spine
- Spinal tap
So here is what she said. First she said that none of the tests show any evidence of why I have clinical weakness. She said that the MRI of my head showed some changes that would indicate one of the following:
- Diabetes (which non of my test indicated I was diabetic)
- hypertension (not a problem)
- aging (she said I wasn't old enough to show this change)
- Complex Migraines (this is what she has pegged the changes of the mri to. I did at one time have a chronic problem with migraines after a car accident, but they have been resolved for years now with magnesium complex, which she doesn't believe but she didn't argue when I pushed that it really did help.).
She said the MRI of the spine showed that I have mild arthritis in the facits of my low back, and that I have a bulging disc in the low back that is very mild and not impending on my cord. She also said there were two bulging discs in my neck but again they were not serious enough to be of concern. Non of these results are the cause of my problem according to her. The good news was that the stroke I had back in 04 no longer shows on the mri. So apparently it has healed. I wasn't aware that a small stroke damage on an mri could go away but praising God it has!
She said the EMG and nerve conduction test are fine. Although I must note that when they were doing my right foot (they only checked my right side btw) they had to keep redoing the shock one because at 10 they would get the first signal but then it would show nothing on any other signal. This happened when the neuro doc did the emg here in Alaska back in 09. They finally decided it was because the muscle on that foot is in a permanent tight cramp which is causing the foot to turn in.
She said all blood work that has come back is fine and that she suspects the ones that were sent out were going to be fine too. She said the peliminary spinal tap was fine and she suspects the other tests of the fluid will be fine too when they come back.
She said she does NOT know why I have clinical weakness and stiffness. I asked her specifically if she thought it was PLS. She said no its not pls. I asked what ruled out the pls? She said that they did not find any changes on the emg or mri to indicate pls.
She said she could not give me any diagnosis (I did not type in the ALS before that word, this is done automatically by this site, irritates me but I am not going to keep editing these things out when I type in ALS diagnosis.
Now, she did start to say that she thought it was my complex migraine disorder causing all this and I should go on a migraine medicine. I protested and reminded her that the symptoms of the weakness/falling started before the migraines started (which was after the car accident) and that the migraines have been delt with already. I only get a migraine about once every 3 or 4 months if that much!
So because I protested and reminded her of some of the symtoms in which she had a detailed history that I had typed out and given dates and everything, she then changed and said that it could be a rare form of dystonia, but it would have to be hereditary and found with a dna test. I told her that I had a dna test when I was pregnant the last time (due to a doc who insisted that it be done) and that test did not show any markers of anything wrong with the dna. She said that the rare form could be that I am the first in the family to get it. She suggested I take a med that is used for dystonia and if it works and improves things then it most likely is dystonia I am suffering from. I looked up dystonia after talking to her and it doesn't sound like my problem at all!
So she has not given me any ALS diagnosis. She wants me to go to physical therapy (physiologist doc). I feel she has ignored 3/4's of the things I have told her. The only reason I am not in a wheel chair is because of my relentless drive to stretch and exercise to keep things moving. The contractures I am getting is going to happen because of the constant spaticity. But being a soccer coach for 16 years and going to training on injuries and treatment of injuries, has taught me enough to keep me moving now. I am not sure I want to throw anymore money to a pt who will show me the same things I already know.
I asked if she thinks I am taking any meds I shouldn't be. She looked at the list and said that they all should be bennificial to me. I find this incredible that she was not willing to come up with a ALS diagnosis of anything. Am I wrong in stating the mri's and emg's cannot rule out pls? If anything they make the case for pls all the more don't they?
I even asked her if she thought it was a mental thing. She said no she didn't believe it was. She did ask me if I was under stress. I told her no, the only stress in my life is that I am loosing ability to live my life the way I choose to live it! That is the only thing I stress about and I have coping skills that have helped me to move on when I can but quite honestly, its frustrating to find another ability that I have lost. She didn't say anything to this.
So I am left with the same problems as before...only about $10,000 in the red now. This has been an ordeal and I should have gone with my first instinct of fighting for getting more experienced doc. I have lost respect for most medical professions when it comes to them trying to figure out what seems to be pretty clear to me. But for an institution that claims to be able to figure out medical puzzles, to roll over and play the "I don't know" game with me has really made me angry. I got sucked into another money and time wasting scheme!
As for the flight back, we sat on a plane in Orlando 3 hours before it finally took off (do to weather). That made us miss our connecting flight in Seattle, but we were able to get on a flight and had enough time to eat dinner in Seattle airport. So not so bad. We were only 5 hours later than originally planned for landing in Anchorage.
Congrates if you got through all this post!
