Wednesday, April 20, 2011
Vanessa's 6th birthday
I can't believe my only little girl is 6 years old already. I love you Vanessa!
Thursday, April 14, 2011
Thursday, March 17, 2011
Mayo Clinic, Rochester, MN
So here it goes...
Met with a NMO Specialist and he has reservations about if I have NMO or not. He took more blood to test to get an updated analysis on it specifically for NMO.
Getting this guys thoughts about my condition was interesting due to the recent visit with a MS Specialist at the Clinic of Neurology in Golden Valley. That gentleman made it seem like he was leaning toward MS although he did note that it seemed like it was in the very, very, very early stages of it which means I may not have another "flare-up" for 10-15-20 years. I liked to hear that, even more I liked when he said if I was his daughter that he wouldn't move forward with a treatment at this time but would like to continue to monitor closely with new MRI's in a 6 month interval.
So in short I'm waiting again.
You're prayers are very welcomed and appreciated.
Other thoughts:
It's funny that now the initial storm has passed it's almost like life is back to normal with the exclusion of my thoughts. Before I thought about other things, now all I can think about is if I feel tingling in my legs or if I move my eyes just right I could maybe feel some soreness? I am not sure, I think my mind is playing tricks on me. Please pray for peace for me.
All in all I would say that this whole thing has brought a new perspective to my life and to my families lives as we don't take anything for granted anymore.
Met with a NMO Specialist and he has reservations about if I have NMO or not. He took more blood to test to get an updated analysis on it specifically for NMO.
Getting this guys thoughts about my condition was interesting due to the recent visit with a MS Specialist at the Clinic of Neurology in Golden Valley. That gentleman made it seem like he was leaning toward MS although he did note that it seemed like it was in the very, very, very early stages of it which means I may not have another "flare-up" for 10-15-20 years. I liked to hear that, even more I liked when he said if I was his daughter that he wouldn't move forward with a treatment at this time but would like to continue to monitor closely with new MRI's in a 6 month interval.
So in short I'm waiting again.
You're prayers are very welcomed and appreciated.
Other thoughts:
It's funny that now the initial storm has passed it's almost like life is back to normal with the exclusion of my thoughts. Before I thought about other things, now all I can think about is if I feel tingling in my legs or if I move my eyes just right I could maybe feel some soreness? I am not sure, I think my mind is playing tricks on me. Please pray for peace for me.
All in all I would say that this whole thing has brought a new perspective to my life and to my families lives as we don't take anything for granted anymore.
Friday, March 4, 2011
Update on Kristi
Sorry I haven't posted for awhile. It seems as though I don't have enough time in my day to do everything.
As far as my eyesight I would say it is about 99% better! I had a second opinion last Friday. No new tests were done or anything. It was basically just going over my case with a ms specialist. He is not sure if I have ms. I guess to get a definitive diagnosis there needs to be two episodes at two different times. So again back to the waiting table.
My appointment at the Mayo is scheduled on March 14th. I'm a little nervous about even going. I'm not sure what kind of tests they are going to want to do. I've heard that they like to do do a lot of their own testing. Being it's been a couple months now since I've had some tests done that they might want to repeat them anyway. Part of me wants to wait until I have another episode if I even ever do to go.
Kristi
As far as my eyesight I would say it is about 99% better! I had a second opinion last Friday. No new tests were done or anything. It was basically just going over my case with a ms specialist. He is not sure if I have ms. I guess to get a definitive diagnosis there needs to be two episodes at two different times. So again back to the waiting table.
My appointment at the Mayo is scheduled on March 14th. I'm a little nervous about even going. I'm not sure what kind of tests they are going to want to do. I've heard that they like to do do a lot of their own testing. Being it's been a couple months now since I've had some tests done that they might want to repeat them anyway. Part of me wants to wait until I have another episode if I even ever do to go.
Kristi
Friday, February 11, 2011
Yesterday was my first day completely off Prendizone. It makes me kind of nervous because I keep wondering if the symptoms will come back. I have a couple appointments scheduled with experts in the field of ms type diseases in the next month. One here in the twin cities and the other down at the Mayo Clinic. So, we'll see what happens there.
Friday, February 4, 2011
Results Are In....
Yesterday, my spinal tap NMO test that I had been waiting a month for came back. Of course my Dr. was still out of the country. Her RN looked over the results and told us that the results looked good to her meaning the test was negative but of course she's not the Dr. so blah blah blah........
Today, my nurse called me again to tell me that my Dr. is back in the country and has had a chance to go over the results herself. She also said that the results of the spinal test are negative. Which is great right? Well, yes but in the same breath she told me that she thinks I have ms again. I just don't get it. They just got done telling me that ms was completely ruled OUT. I guess with more research on her part that ms can show itself in different ways. So she still wants me to get a second opinion and still go down to the Mayo. I don't think they know what the heck is going on. I am just really frustrated. I went from having a good day to a bad day.
I met this lady from my church that who is a naturalist or whatever you call it. She has recommended having a complete food allergy test done to see if maybe it could be a food allergy. So, that's what I am trying to get ordered now.
That's all for now. I'll continue to post as I find things out.
Kristi
Today, my nurse called me again to tell me that my Dr. is back in the country and has had a chance to go over the results herself. She also said that the results of the spinal test are negative. Which is great right? Well, yes but in the same breath she told me that she thinks I have ms again. I just don't get it. They just got done telling me that ms was completely ruled OUT. I guess with more research on her part that ms can show itself in different ways. So she still wants me to get a second opinion and still go down to the Mayo. I don't think they know what the heck is going on. I am just really frustrated. I went from having a good day to a bad day.
I met this lady from my church that who is a naturalist or whatever you call it. She has recommended having a complete food allergy test done to see if maybe it could be a food allergy. So, that's what I am trying to get ordered now.
That's all for now. I'll continue to post as I find things out.
Kristi
Friday, January 28, 2011
update
Still no news on spinal tap results. As for Jonah, he is gaining, gaining, gaining. Part of that though is that he wakes up every 2 hours it seems at night to eat. He still has no self soothing skills being he refuses to suck his thumb anymore which I think is really too bad but what do ya do?
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