Gall bladder out this March now CIDP after having GBS in 2005
November 19, 2009 at 10:38 pm
I have now joined the ranks of CIDP diagnosis. I had my gall bladder out this past March and haven’t been able to get back on top of things. I lost 40 lbs and look anorexic to some people. I know people say surgery is tough after having GBS and I had a severe case in December of 2004/2005 being paralyzed except for my lungs. I have really haad four good years until 2009 after having GBS but now my neuropathy has worsened. I started my IVIG treatments of immunoglobin in November and go again on Dec. 16th for 3 more treatments. I am just so tired all the time which I know is part of GBS and want to get back on top again. I’m told that I may never get back again now that I have been diagnosed with CIDP. I’m 51 years old and just want to feel normal. I’m on many medications like Neurotin, Ambien to sleep at night, Achipex for my acid reflux, and Paxil for my nerves. Anyone offer any support that would be welcomed. Thanks Caroline from Michigan..
Oh today I went and got a permanent handicap parking card which was a little hard to accept but glad to have it. 🙂
AnonymousNovember 20, 2009 at 8:31 am
Sorry to hear that you have CIDP. wish you didn’t. It hard to accespt having a disease that is relapsing. Cuz you just never know when its going to happen.
Just try to keep a positive attitude and try to keep a journal so you can see where you are and how far you have come or declined. It easier to see the progress or the decline when you look back at a journal.
I try to do that for my son Ryan. Like the other day he said I just don’t understand why I’m not seeing any more improvements. But I sat down with him and we started talking about where he was in July compared to where he is now. even compared to where he was a few short weeks ago. it easy to miss the little improvements its not written down. But if I write down Ryan walked 200 feet before resting a few weeks ago and tehn this week write down Ryan walked 300 feet we could easily miss that improvement if it wasnt written down. he is making some slow progress. so try to keep some sort of journal if you can.
what part of Michigan are you from? we live in Holland/Zeeland area (westside of state by Grand Rapids) There seems to be a good number of people from Michigan. I hope that doesn’t mean there is something wrong with Michigan that we seem tohave a lot of CIDP cases. lol
Good luck to you and if you ever need to just talk email me and I can send you my phone number.
November 20, 2009 at 9:00 am
I live in Allendale MI so we are neighbors. I so would like to get a support group for people with CIDP/GBS. We have two other people in Allendale that had GBS but one is fully recovered and the other has some residuals. I was living with residuals of tiredness and neuropathy in my feet but this has increased. I was told rest is best and less stress. My life in 2008/2009 was anything but rest but now God has given me this time to rest and heal and it is hard to go from being busy to little business. I have to stay close to home right now because I get tired venturing out too long. I would like to stay in touch. My email is [email]email@example.com[/email] if anyone lives near me and wants to start a support group 🙂
AnonymousNovember 20, 2009 at 3:55 pm
Hey Caroline from Michigan !!
I had my gall bladder out Feb of 2008. They tried the “little incision” method and ended up cutting me from one end to the other. Dumb luck huh?
Sorry you are dealing with this neuropathy, it stinks sometimes.
Glad you found this little group. Basically the folks here are kind and helpful. I know that I have never run across a “CIDPer” on the streets. I have only met people with CIDP in meetings or here at the forum. It is hard not being able to talk with someone who is dealing with the same thing you have. But lots of folks here have been dealing with it for a long time and can offer tips about living with it. How to do things better, and what seems to make it worse.
Glad to have you around
AnonymousNovember 20, 2009 at 7:43 pm
Yes we are neighbors and yes it would be nice for Ryan to talk to others with CIDP and compare notes. He always comes in here and reads ten we chat about whats going on with everyone here. we feel like you are all our friends. This is truely a special community of people.
who is your neuro and is where is he located? Ryan’s neuro’s are Dr Sullivan in GR and we also see Dr Lewis in Detroit. If you would lie to chat call me 616-566-8368
November 21, 2009 at 12:27 pm
Isn’t this a small world. My doctor is Dr. Sullivan also. I have your phone # and I would like to call you sometime. I’m home most of the time because it is hard to get out much and go far right now being tired alot. Not sure if it is from all the medications I”m on or just will take time like to get back to what I called normal. Sometimes I feel trapped because I wish I had the energy to just go and do things like I used to. I’ve never had much sit in me and to have to sit and rest it is hard. I will give you my phone #616-895-4057. Hope we can get in touch. Is anyone else tired alot with CIDP. Hopefully my next treatment will help me get more on top again :-).
November 21, 2009 at 12:36 pm
I see we’re about the same age, I’m a few weeks older :-). Anyway having my gall bladder out was suppose to make things better but I seem to have heartburn alot. I know I’m not suppose to eat certain things but it is often hard when you have others in your family wanting other things. Now that you’re gall bladder is out has things gotten better for you? Did you have GBS and then CIDP? I haven’t been able to go back to work which was only part-time but my doctor says I can apply for disablity after a year of not working I guess. Anyway thanks for the post.
AnonymousNovember 22, 2009 at 3:26 pm
Call me anytime. I would love to compare notes and just chat. This disease is very hard on the person with the illness and its hard on the family too. Dr Sullivan is a good neuro but we did seek out Dr Lewis because he specializes in this illness. so he workes with Dr Sullivan. so we feel like we have the best care between the two of them. Ryan actually see’s Dr Sullivan this Tuesday.
I’ll call you soon if I don’t hear from you.
AnonymousNovember 22, 2009 at 9:41 pm
Regarding gall bladder, It was odd. I never had symptoms, or at least they never bothered me too much. I guess I had some heartburn beforehand, but I never attributed it to anything. I had this huge attack, thought it was a heart attack. The Dr. who took out my gall bladder said it was full of stones, big stones. I have not had any problems since.
I had a “cast iron” stomach before, and I have not altered my eating habits afterwards. No problema.
I did not have GBS prior to CIDP. My CIDP onset was very slow. It took 10 years from symptoms to diagnosis, I was very active in between.
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