Update on Dell-We’re home from hospital
AnonymousNovember 1, 2006 at 9:32 am
First, I want to thank each one of you for your prayers for Dell and our family.
Dell was admitted Thursday evening and we got home Monday evening. Here is what we know so far but as you know, things change quickly.
Spinal tap showed 96 for protein, I think his normal is 30 something.
He tested negative on EMG for Myasthenia Gravis but tested postive on bloodwork. Normal is 0-.5 and he’s 1.9.
We did 3 rounds of IVIG and presdisolone through the iv. Something has made him better, he’s not so weak. He’s not as strong as he was 3 months ago, but maybe he can continue on this course.
He usually gets 12 grams every 2 weeks, he got 23 grams in 3 days.
Dr. at Johns Hopkins, Dr. Thomas Crawford is a CIDP and MG specialist and he wants to see Dell’s biopsy that was taken 12/05 before he decides to see Dell. We are hoping to get it overnighted and be at John’s Hopkins in 1 week, that may be wishful thinking though. Dr. said could be false/postive for MG.
Did 24 hour urine-will get results soon.
We have appt. with neurologist today, maybe more test will be complete.
If he is positive for both CIDP and MG, he’ll be one of only a few in the world. My husband and I are really confused. We don’t want him to have either disease but we just want to know what he has.
Please keep your prayers going. It is great to be able to jump on my computer and get answers and prayers from friends who have been there.
AnonymousNovember 2, 2006 at 7:34 pm
You and your family must be very worried about Dell. I remember what it was like not having a diagnosis and having tests for lots of very scary things.
Don’t get too concerned about the MG possibility yet. My neuro in Virginia thought I had it too, but he was mistaken. I went to another neurologist (dept. head) at George Washington University Hospital for a single fiber EMG, to confirm or discard the diagnosis. He was able to rule out MG.
You’ll probably hear a lot of conflicting information, as you go through this with Dell, but don’t take it all to heart. Wait until you have a complete diagnosis. You can drive yourself crazy with worry if you go down the path of learning about each possible diagnosis and it’s ramifications.
I finally got my diagnosis of GBS after seeing Dr. Kazim Sheik in the Neurology Dept. at Johns Hopkins. The doctors there consult with one another about diagnoses and really know a lot, so Dell will be in very capable hands.
Prayers and good wishes go out to you and Dell. Please keep us posted.
AnonymousNovember 2, 2006 at 8:59 pm
Thanks for all your postings. Jerimy, I wish I was there with all of ya’ll at the convention, maybe next time.
We have not heard when out appt. will be at John’s Hopkins. I will let you all know.
Dell seems to be holding on to the strength he got after the treatment and steriods. Every day is a new day so we are keeping our fingers crossed every time we get up in the morning.
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