Sunday, February 8, 2015

Our first day at Mayo


We have completed our day.
We spent several hours in the neurology dept today. We loved the doctor and his fellow. They were amazing! Of course, anytime Zine is evaluated we really can see the effect this disease is having on his body. It is truly amazing that he is doing as well as he is doing. His left side is much more affected than his right. (we kinda already knew that but it's very obvious when they evaluate)
The doctor believes that we most likely do have a correct diagnosis. However, there are some things that he wants to look at. One being Zine has some peripheral nerve damage and that doesn't always go along with MS. So the doctor wanted to check that out. There are some concerns with his optic nerve so they want to check that out as well. The doctor doesn't believe the new medicine that Zine started is going to do anything for him. There's just not enough data out there to support that. But we did learn about a couple of things that are being done that no one has told us about as far as treating the symptoms. The bottom line is if this diagnosis remains, there is NOTHING that can prevent the regression of this disease at this time. But there are some things that can be done to help with the symptoms.
Zine now is the proud owner of a cane. He doesn't need it all the time but it is going to be a big help to him at times. He has had a great attitude about it! I know it has to bother him but we've been able to keep it light and not heavy duty emotional. I think we're both waiting for that heavy duty emotional time to happen. If I had to guess, Thursday after we get some of our reports...that might be the time!
Tomorrow Zine will have blood work at 6:55 in the morning. He will also have MRI of brain and spine, nerve workup done and an EMG. He will have something Thursday morning and then we will meet with neurologist again late Thursday afternoon. At that appointment, we will know if we are done or if there are more tests that need to be done.
We enjoyed dinner with the couple from Huntsville again tonight. Tonight we shared quite intimately with each other some of the most painful parts of our lives. It was very good for Zine and I to know that what we have been going thru emotionally is not unique to just us. We hope that we were as a big encouragement to them as they were to us. It's just nice to know you're not alone in what you're going through. And that yes, there are people out there that can truly understand.
We hear that it is supposed to snow here tomorrow. YIKES...Karen's coat is definitely not warm enough for snow!! Zine just added the lining to his jacket so he thinks he is going to be okay.
I am also struggling with sinus congestion. Think the temperature/climate change is getting the best of me!
It has been a busy day but it hasn't been a bad day. Don't know that I would say it is has been a great day either though. So it's just been a day. Thanks for your prayers. We continue to cherish those prayers. At 1:45 tomorrow Zine has a test that we understand is kinda painful so I do ask that you pray that it wouldn't be bad. The good news is he doesn't have much feeling in his legs so it probably won't hurt as bad!!

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