Newly diagnosed with CIDP
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October 29, 2007 at 2:30 pm
I was diagnosed finally in April 2007 although my first episode with CIDP was 7 years ago. Jan1 2001 I woke up with no feeling in my left side and of course the first thought was stroke, It was not. After 3 weeks in the hospital with all the tests including spinal tap and EMG they did not actually diagnose some said GBS some said just a virus. I had pneumonia the end of Nov and was in hospital for a week and then again in hosp. in Dec for over a week with cellulitis in my face. and just about 2 weeks later this happened to me. I came out on a walker and moved to WI and later in sept that year they sent me to MAYO where again no diagnosis but all the tests done again. I finally walked 14 months later and thought everything was fine until now I am in a wheelchair which happened with 2 weeks of surgery onMar 20 2007. I am frustrated and always in pain even with the Lyrica, Lorecet, and 75mcg of Fentynal. I do hydrotherapy 4-6 times a week which help with the stiffness and to not atrophy keeping range of motion. I files SSDI and had to see their medical doc and the phsychologist last week. The medical doctor told me not to worry because he was reporting to them that I am fully disabled. We will see. This disease has taken a toll on my husband and son but they are there through it all. My husband actually told me he didn’t realize how busy I was every day with my part time job and the household stuff. Since he has to do it all pretty much anymore. I can no longer drive and go when I want and that is driving me crazy. I used to be on the go all the time and now I feel like I am in a prison either my body or my home because this is it. I actually get excited for doctor appointments and grocery shopping although the doc appointments are the only thing I definitely go to no matter how I feel. Grocery shopping is a treat if I am having a good day. Wow that sound awful, worse than when I thought it in my head. LOL Anyway I just wanted to intro myself and say I am glad to find forums where there are people that actually understand what I feel and am going through.
Thanks
Jody -
October 29, 2007 at 3:40 pm
Jody, I’m sorry you had to find us but glad you did and welcome. Here you will meet many wonderful people. I never seem to have advice for anyone really…they are always advising ME. I dont know where I’d be without this group.
I’m glad you have a good family support…it really helps.
Best wishes,
Stacey -
October 29, 2007 at 4:37 pm
I am so sorry that cidp has hit you this hard. You did not mention if you have received ivig. We too are frustrated with this diseas. My son (10y/o) will be starting treatments again tommorrow after a re dx of cidp from gbs. I hope you get some relief soon and things start to look up!
Dawn Kevies mom -
October 29, 2007 at 8:45 pm
Welcome! We are glad you are here… I know what you mean about a trip to the grocery store. I was elated to do something as normal as grocery shopping after being hospitalized and homebound for an extended period. 😀
I find that I thoroughly enjoy things I used to take for granted.Take care!!! Visit often!!
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October 29, 2007 at 10:54 pm
thank you all I do feel better knowing that there are other people that I can talk to about this crappy disease. and to whoever it was that askd about the IVIG no I have never had it. actually the only things I have done is physical therapy and hydro therapy and then the pain meds to help. Last time it worked for me but this time I am thinking that I may need t try something either the IVIG or the Plasmaphereses to help me get out of the chair. My doctor already says that I will probably never work without some type of assistance because of how bad my left leg has been both times now but then I am stubborn and he knows it so we have left it to my own body to decide. LOL I have found that you need to be your own best advocate when it comes to your health care. And yes I do feel blessed with my husband and his family for their wonderful support and our church has been wonderful. Our parish nurse is willing to some and check on me if necessary which she told me when she came to see me a few times in the hospital and our mens group at church helped us with the cost of the ramp so I could get into our house. I think mor than medicine in some ways is the support that ou have around you I guess to keep you sane. Not that I was ever considered too sane LOL. Again thanks everyone for the welcome.
Sincerely Jody -
October 29, 2007 at 10:58 pm
I just wanted to let you know my prayers are with you for your son. My son was born with some very very rare conditions and they told me he would not see his first birthday when we were at Duke University Hospital. He turned 16 in July on the 27th and after multiple hospitalizations and over 50 surgeries he is doing very well at the moment but I do know how tough it is whn your child is ill and on top of that t is something rare it is tough and getting a good doctor is the hardest I think but once you do stay with them. I hope and pray for the best for him. Good Luck
Sincerely
Jody -
October 29, 2007 at 11:58 pm
Hi Jody, Welcome to The Family. What part of WI are you in? I have family between Marathon and about 90 miles north and in GB area also. I would give ivig a try, its less invasive than pp. (fewer needle pokes;) ) Feel free to ask as many questions as you have or just vent when you need to. Take Care.
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October 30, 2007 at 12:12 am
I just wanted to welcome you to the forum! I was also wondering where in WS you live, as we are neighbors since I live in northern MN. I spent almost 2 1/2 years in a wheelchair after getting CIDP & didn’t go to a grocery store for 3 years. How small our worlds can be at times; how much “healthy people” take for granted. I will post more after a good night’s rest…
Pam -
October 30, 2007 at 4:26 am
Well it sure does sound like you have CIDP based on your history – what a bummer! I’m so glad you found the forum though, being home bound is much less confining when you have someone to share it with who understands. Since you have CIDP you should maybe think about giving IVIg a try. Other than a recent relapse my legs have been stronger since resuming IVIg treatments and my rest is more restful without my legs twitching and jerking so much. 🙂 Welcome to the forum Jody!
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October 30, 2007 at 5:42 pm
Sorry I guess I wasnt clear I lived in WI for about a year in New Auburn and Rice Lake about 25-35 miles north of Eau Claire. I actually live in North Dakota where i was born and raised most of my life. I loved WI but only knew a couple of people and could not get work on a walker or crutches so i came back where most my friends were and i am glad i did because i met my husband a year later and he has been my biggest support through all this.
thank you all for the welcome and i am definitely glad i found this site.
sincerely
Jody -
October 31, 2007 at 12:56 am
Jody, welcome to the group and ask all the questions you want. Some people have alot knowledge in here.
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