Hope for those diagnosed with CIDP
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April 26, 2008 at 8:32 pm
Hello – Just wanted to post a note of Praise with hopes that it will give Hope! – I was dx with CIDP in 2001, was treated with Predizone for about five months and IVIG for about 3 years. At first, I didn’t think I could make it…. at times, didn’t want to make it…. by the grace of God… it has passed… maybe just for a while… But for now it has passed…. my last treatment was in 2004…. I can walk, I can run, I can jog – I’ll tell ya, I never would have thought I could get through it… But I did and you will too!
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April 27, 2008 at 2:04 am
Thanks Monica! And a big congratulations on getting better.
I started back to college last year on the internet and this summer I’m trying to take 2 classes in summer session to see if I can handle going to class everyday. Right now it feels rough. Im getting hotflashes now as I type – Im breaking out in a sweat with the AC on 65 degrees (F). Im constantly wondering if Im about to croak. I’m still on Imuran and IVIG but I will be stopping Imuran asap.
All I have is hope.
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April 27, 2008 at 6:54 am
Monica,
I am thrilled for you!
I do have a question. Do you have any symptoms now? Numbness, fatigue? Or, do you feel as normal as pre-CIDP?
Thanks!
dennis
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April 27, 2008 at 8:43 am
Monica, that is great news. Like Dennis, I would love to hear more of your story – like how your symptoms started, what they were, how quickly you progressed and how bad you got, when you started improving, etc.. Feel free to pm me if you want. Thanks!
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April 27, 2008 at 11:19 am
Monica, Good for you! Your message may have been short, but it was sweet.
We all need to be reminded that sometimes things do change for the better.
“You walk, you run, you jog”…there is hope.
JayDee -
April 27, 2008 at 12:08 pm
Hello,
I think I can add to this. I have been off “ALL” (that’s right, “ALL”) medication for CIDP for almost five years now. I show no signs of relapses or the return of progression and believe me, I have been tested by emotional situations and lots of stress.I benefit from a “jump start” of physical therapy once a year.
The downside is that I was extremely damaged by CIDP and indications are that I will not heal from that much damage.
The upside is, that as the years go by and I show no signs of the return of progression, I may be CURED, I may no longer have CIDP.
YES, we do have HOPE, so NEVER NEVER NEVER give up.
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April 27, 2008 at 6:42 pm
Ohhhhh… I remember the hotflashes…. I would all the sudden, start pouring sweat…. it was so weird…. One thing I learned as I was looking at a crucifix in my hospital room (I was in a Catholic Hospital)… I was looking at the body of Jesus…. and was reminded that it didn’t end there for Him… that THINGS ARE NOT ALWAYS AS THEY SEEM… I was afraid I was having a heart attack many times… and I felt as though my waist was being SQUEEZED AND I thought I would die…(did you ever do that?)… but those sensations were not AS THEM SEEMED… that really helped me to realize that I may be “feeling” something ie, Heart Attack or SQUEEZED waistline, but it wasn’t actually happening….
You hang in there and remember if you get tired…STOP AND GIVE YOU BODY A REST!
HOPE: According to Websters….”A cherished desire with expectation of fulfillment” – HOPE AND HOPE AND HOPE because you should expect healing!
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April 27, 2008 at 6:46 pm
Not completely normal….. My body responds to stress with a bit of tingling and dumbness…. when I get tired I have learned to rest…. I can honestly say that since I’ve changed my diet (less sugar, less yeast, ie bread, rolls, NO ARTIFICAL SWEETNERS, more raw veggies and fruit) my pain has been cut about 75%…. I’ve always thought the pain in my legs was CIDP… now I wonder if I was toxic from artifical sweetners….. Do you have pain?
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April 27, 2008 at 7:45 pm
OK – I began with tingling in my toes.. then, my lips and nose.. I called my doctor who is also a friend…. he suggested I take B12… about a day or two later, I began falling… I would be walking and I would just fall… because of this I went to ER and they tried to send me home after a few tests… I wouldn’t go home because I knew something was not right. I stayed all night at the hospital and the next day my doctor told me I needed a neurologist so he made me an appointment. I went home and about an hour later the numbness started moving up my body… I called my doctors wife because I believed if the numbness I was feeling moved to my heart or lungs, I would die… at this point I couldn’t walk at all… I remember trying to crawl to the kitchen and I couldn’t even crawl.. it was an hours drive to the neurologist, by the time I got there I was completely helpless… I will never forget taking a drink of water at his office… it felt like needles pricking my tongue.. He clinically diag. me with GBS and sent me to hopital to begin IVIG. Later he did a spinal and confirmed that it was Guillan B. Syn. This was August… I responded within 3 days to the treatment…. on the seventh day I came home and was improving…. until September…. I begin feeling very weak again…. couldn’t walk as good and ended up in the ER for IVIG…. same senerio…. I responded well to IVIG (and was also taking predizone) and on the fifth day went home and in October…. same senerio…. then I was diag. with CIDP…. at which time we sent up treatments for every three weeks… and by the third week I WAS ALWAYS in great need for a treatment…. as I got better we spread the treatments out to six and then nine weeks…. then went back to every three weeks until I lost my insurance….. by this point I couldn’t tell a difference after I had a treatment so the dr. suggested we go off treatment until I felt i needed another one….. I haven’t had one since that was 04. How about you…. what happened to you and do you ever feel that you could have something other than CIDP?
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April 27, 2008 at 7:46 pm
Hi,… what damages are you left with
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April 27, 2008 at 8:31 pm
Monica – I have CIDP, I was never diagnosed with GBS, I didn’t have the severity of GBS with being paralyzed or being on a respirator, etc. I started feeling ill in October with a cold/sinus infection. About a week and a half later, I started with numbness/tingling/pain/burning in my hands and feet and started feeling fluey, bad headaches, high BP, etc. Just a “sick” feeling. A few weeks later, I started losing strength in my legs. I underwent testing and after having a spinal tap (was sure I had Lyme’s disease), I got really sick with post-spinal headaches and ended up in the hospital. In the hospital they ran a bunch of tests including the EMT/NCV. I got diagnosed with CIDP about 8 weeks after my diagnosis. I guess it wasn’t considered GBS because it wasn’t as severe, I don’t know. I started prednisone mid-December, started feeling better almost immediately, and now, 4 and a half months later, I am very close to my old self. I am on 16 mg of pred (started at 60), 75 mg. of Imuran, and IVIG. My neurologist is trying to space the IVIG out, so we will see how I do. The only residuals I seem to have now are a bit of minor tingling/zapping in my fingers that I really am not even aware of. Thanks for posting your experience.
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April 28, 2008 at 2:27 pm
Monica,
Good for you. I just posted a note to see if others were experiencing what I have been going through. It’s so good to know there is hope and hopefully it will pass for the rest of us as well. Thanks for your encouraging words.ken
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