herself
Your Replies
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August 9, 2007 at 7:27 am
Miami Girl,
the first AFO’s I had were hard plastic that ran on the back of my leg from the base of my toes up my leg to below my knee. One velco strap across the top. I have toe off braces now, less to them with the same support.August 9, 2007 at 7:09 amMy numbness never goes completely away but gets better after the infusion. Also, I thought being given benadryl and tylenol before the infusion was always done.
August 7, 2007 at 7:43 amWelcome to the site! Sorry you have to have CIDP to join us but you’ll find alot of support and a great many friends.We all learn from each other so more stories and input are always welcome.
August 7, 2007 at 7:38 amHelen,
It’s a great thing to post, gives us all a little hope. Besides it’s good news!!! I’m really happy for you. Lets hope it last a very long time. PattieAugust 7, 2007 at 7:33 amLinda,
Try to avoid the formed plastic AFOs, as they are so uncomfortable. I started out with them and had an extreme weight lose, they couldn’t be refitted so it was a waste of money, the ones I have now can handle a weight lose or gain with just adjusting the straps. Works for me!
PattieAugust 7, 2007 at 7:26 amDavid,
I get the aspeptic meningitis with every brand it seems, lucky me. I have them keep the flow rate under 160, do the benadryl and tylenol, plus my doctor has me take 4mg of Dexamethasone in the morning before the infusion and for a day or two after. It seems to really help.
PattieAugust 6, 2007 at 9:33 amSounds like you are blessed with good friends {both on site and off}, a benefit is a good idea. Remember to lean on your friends, they are so important at times like these. You’re still in my prayers!
August 4, 2007 at 7:35 amI haven’t had problems with my tongue {yet?} but my right eye is droopy and I have problems swallowing, mostly liquids. At first I thought my old ulcer was acting up but my doc told me it was a nerve thing. If it’s food you have problems with chances are an ulcer, if it’s mostly liquids chances are it’s to do with your nerves. Pretty strange. Doesn’t bother me except when it’s a mouth full of $4 coffee I have to spit out and I’m sure it’s not real attractive, lol. Rates right up there with crashing and burning in public.
August 4, 2007 at 7:24 amand welcome to our forum. It’s good to hear from someone doing so well and with a great attitude. We all need to take everyday one at a time. I’m not doing as well as you but not as bad as others, it sure effects all of us so differently. Guess we all need to be thankful for what we can do and keep plugging away.
August 3, 2007 at 7:22 amI’m sooo jealous of those beautiful babies! Some day I’ll get to be a grandma. Just trying to figure out how they got that great hair. My son was born with hardly any, just little tufts of red which fell out.
August 2, 2007 at 8:19 amFlower,
Washington has the medical Marijuana and has ads in some of the weekly free papers. If you’re interested I can private message you the web site. I’ve never tried it for the pain, haven’t tried it since my rebellous teen years when it just gave me a headache and I went to bed. Had considered smoking it when the nausea was so bad but never got around to it. I wouldn’t know where to get any at this point in life,lol.
PattieJuly 31, 2007 at 8:11 amJulie,
Let’s see, positive thinking. I had to move closer to my family and my mom and I are spending alot of quality time together or we’re on the phone with no worries of long distance bills. My yard has no weeds to speak of, sitting on my hindend and weeding is something I can do. And last: Handycapped parking is the greatest!!!
PattieJuly 31, 2007 at 7:58 amLinda,
You might ask about TOE OFF Brand. The ones I have are pretty light weight, fit in the shoes pretty easy and aren’t uncomfortable as far as AFOs go.
PattieJuly 28, 2007 at 8:06 amJulie,
The Provigal will help with the fatigue but you still need to pace yourself and not over do it. I still take naps and limit myself to what I do. Having the house spotless isn’t worth having my body revolt the next day. This time of year the house is a mess but my yard is looking pretty good. The owner of the building has a kid come over and do any of the heavy work for me. Being out of doors also helps with my attitude! Who can be cranky when the sun is shining?July 28, 2007 at 7:49 amShe goes up, she aims, she misses the ball. Next.
