Hi everybody! Sorry for the gigantic lag in updates. I must admit I have been trying to stay away from this forum so that the ghost of Xmas past doesn't haunt me anymore, if you know what I mean.
I do come and check in every once in awhile to see how folks are doing. I do miss the friendship...
Just wanted to wish all the great Dads out there Happy Fathers Day. I hope your day is enjoyable and you feel surrounded by love and APPRECIATION!
Love,
Cindy
Hi guys, Hope everyone is having a happy Summer so far and enjoying time with those you love.
I have a question about onset of breathing troubles. I am not Dx with anything. First was suspect MND, now suspect CIDP, with follow up July 9th at University of Colorado ALS/MDA clinic. The only...
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Hi guys.
It took awhile but I did finally recieve the report from University of Colorado and will post some of it for help interpretting for those who feel comfortable helping me interpret.
I am going back July 9th to see her again as per my local neuro. I did finally quit my job, my...
Hi everybody! Just wanted to update again and get any thoughts anyone has. This might be long so I apologize in advance.
I dont know if updated since my spinal tap, but there were no antibodies for CIPD, so the neuros felt they werent ready to "hang their head on a diagnosis" OR begin IVIG...
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Sorry I haven't been around on the boards much, I miss hearing updates on everyone and your friendship. Things have been crazy around here. I did have my spinal tap and it was negative for any antibodies. Could have went on with a sural nerve biopsy, etc.
So- basically what the word on the...
Hi everyobdy-
This will be quick and I will write more tomorrow, but am plum pooped out. I LOVED Dr. Quan at the University of Colorado.
My EMG was dirty as heck, but guess what>? Not because of ALS. She really feels strongly that I have CIDP. (which shocked the heck out of us!) I will be...
I am cutting and pasting this from my site.
I promise I'll be better tomorrow.
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Today my friend Sheila brought over a prayer shawl from the prayer ministry at our church. It has been prayed over and it couldn't have come with better timing. I...
Hi guys. Had f/u with local neuro today and he said he thinks if it were ALS it would be progressing much faster than it is, but these processes are often varied with each individual.
He is hopeful that another set of eyes at the ALS/MDA clinic (next week!) will give us answers and direction...
This isn't a question, just had to share. Tonight at my nieces B-day party my sister told me she has been cleaning out her basement to prepare for an adult child moving back home. Anyhow- she's a keeper not a thrower---- and amongst the things she found in one of the many boxes was a folded...