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Lkaibel

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1,529
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Lost a loved one
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06/2016
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MN
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Minneapolis
SO I never thought I would say “Great! Brian has appendicitis!” But after a harrowing week I am saying that exactly. Brian started Radi this week and they gave him Prednidone with that to prevent allergic reactions. The Dr thought his rapid escalation of weakness this week was a reaction to Prednisone. So yesterday we stopped both drugs and were to resume with Radi Monday. This morning, he woke with horrid stomach pain, no bowel movement for third day. Per Drs advice we went to ER. Appendicitis! So they are starting antibiotics first to see if that works because as we know general anesthesia is riskier in PALS. However, given that his lung function is perfectly normal I am confident if it is needed he will come through it too. I am so relieved the alarming escalation in weakness this week had a cause that was not just the ALS or the Radicava. His white count in at 21, so much infection there. I will be keeping a very close eye while he is hospitalized too.
 
Fingers crossed that this will be a relatively quick and easy fix for Brain. Please keep ya posted.
 
It is sort of nuts that on top of ALS he has gotten benign positional vertigo and now this all in about 4 months. I am hoping no surgery for him because much as I trust his lungs, I know recovery would be hard on him with ALS and besides, being cut completely freaks my former picture of health out. At age 67, he was only put out once at age 22 for extensive dental surgery. He has had no other operations- unless you want to count port placement.
 
That must have been a harrowing week! Fingers crossed for you that the antibiotics clear this, but get to surgery fast don't delay as a simple surgery early is going to be a better recovery than a burst appendix surgery with full washout.

Hope you can relax a bit while he concentrates on healing xx
 
So sorry this is happening but get that it is better than progression as a reason. If he needs surgery hopefully they can do a lap
 
I'm glad his breathing is so good. I would not worry too much about surgery. Better now than later.

We all must be aware, especially as we age, that things other than ALS will happen. It's so easy to attribute everything we experience to ALS so we must be vigilant at getting our health care professionals to do thorough investigations of any new symptom that doesn't scream ALS.

Hope he is feeling better soon. I'm very glad they got to the bottom of the problem.
 
I could have even dealt with Cortisone as a reason, but a Radicava reaction or worst of all progression would have been so bad. Everyone thought Cortisone though before this happened. Doctor had said he was almost certain it was not just the ALS. In five days Brian went from stairs with a cane to unable to get out of bed on his own. Hands, arms, legs, feet trunk all going at once. Dr said even in a fast progression that would be highly unusual, but in a slow one like Brian it’s unheard of.

Glad he can resume Radi when we sort this out!
 
Come to think of it, Lenore, my brother has Lupus and RA. He is 81. A couple of years ago, he had pneumonia and his doctor down here put him on prednisone. He went from walking quickly to not being able to put on his clothes. Once the drug was out of his system, he slowly got better. I think they gave him way too much for his weight and age but they were worried about his other issues in combination with the infection. He was also given Cipro which can also cause issues.
 
Prednisone is such a good anti-inflammatory drug that one of its drawbacks is that it can mask infections and make them worse. If Brian had a small perforation in his appendix, Prednisone could also have temporarily masked that.

So while a trial of antibiotics is reasonable, I recommend being extremely vigilant as there could still be a small perforation that could cause all kinds of trouble unless the appendix is surgically removed. As surgeries go, appendectomy is relatively simple and most people recover fairly quickly and uneventfully. I suspect Brian will do well following all this, and it will be nice to put it all behind you.
 
I think the thinking so far is that in Europe antibiotics have become the treatment standard and they are doing it here more now anyway and why not try it with a 67 year old man with a pre existing condition. I am game for that as long as close attention is paid.
 
Karen I should add that the more I learn about Prednisone in general the less I like about it. It is not off the hook per our Doctor as a contributor to some of this weakness.

Yes, we would not hesitate at surgery if needed.
 
Lenore - thinking of you and Brian Hoping this can come to an easy resolution, but I have to agree, getting the appendix before a rupture would be ideal and a lot less recovery all the way around.

Hugs,

Sue
 
Actually so far he appears to be making a smashing recovery. Fever went from 101 last night to 97.9 today. He ate his first meal and that is not causing issues. White count is already near normal.
 
Great news, Lenore!
 
I think in this whole experience of the past week, some part of me shifted from mourning the loss of our old life to just dealing with the fact that this happened to us.

That said, if I were writing a book it would not be titled “My Year of Living with Joy”. How about “Before I Lose My S@?t: My Year of Dealing With It”. Yup, that would be me.
 
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