Forums Forums CIP / CIDP what am I facing?

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  • #8193

    tara74
    Member

    alright I am posting all over the place but I want to know everything I can possibly know. so I was read fsoprano’a thread and dick s post said something about the beginning of the disease and wishing it were caught earlier. I am having a hard time understanding the general course of this affliction. there is not much anywhere on general prognosis. Mine seems to come in bouts the first acute, the second (one year later) lasted two weeks and the third (another year later) lasted six months and then went away for five years. it came back this last may. only the acute was treated the others went away on there own. poof vanished.

    is it like ms, where it comes progressive or relapse remitting. if it is RR then does it eventually go progressive. what is the general life expectancy. what are the statistics on ending up in a wheel chair?

    I know each person is different and generic statistics are not reliable but I have no grasp of what I am facing.

    #85053

    Anonymous

    In the beginning of our journey I was very much like you. I wanted to know as much info as possible ASAP. My advice is to take it slow because it can get VERY overwhelming. Start with a Google search. Click on the 1st link & go from there. When you come across confusing medical terms Google those too. Eventually you will have read as much as you can & you will actually understand that ridiculous dr’s speak. At least, that’s what I did & it worked. Don’t get me wrong there are still things that I can learn about CIDP but I had to stop researching as it was taking over my brain, LOL.

    To answer some of your questions…

    CIDP & MS are sometimes considered to be sister diseases. That doesn’t mean that CIDP is a terminal illness or that all suffers will end up in a wheel chair. It just means that the 2 diseases effect their respective nervous systems in a similar way.

    In my opinion (and I’m just a mom who has read a lot) it sounds like you have relapsing/remitting. What I understand that to mean is that your immune system gets confused & attacks your nervous system. Then, for whatever reason, decides to back off for a while. Once the attack has stopped your myelin starts to be repaired by the schwann cells.

    For some the schwann cells do a really great job of repairing the myelin sheath before the next attack comes. Sometimes an attack comes back quickly & the schwann cells can’t keep up & fall really far behind – that’s when people start to have some serious issues – such as needing a wheelchair.

    I’m not exactly sure if relapsing/remitting can turn progressive or if the schwann cells just slow down too much & just can’t make repairs anymore & that’s why some people continue to decline. I read that schwann cells regenerate the myelin at a rate of 1mm a day in good conditions.

    Here is a good link explaining schwann cells:

    [url]http://en.wikipedia.org/wiki/Schwann_cell[/url]

    I don’t think there are any studies done on life expectancy of CIDP’ers. From what I have read CIDP’ers can expect to live a normal life span.

    I did do a Google search for you & found this link:

    [url]http://www.nni.com.sg/ForPatientsandVisitors/PatientEducationPamphlets/Peripheral+Neuropathy.htm[/url]

    It states “In most patients, symptoms and functional impairment can be managed and normal life expectancy is expected unless there is a co-existent systemic disease. One should adopt a healthy lifestyle so as to encourage nerve regeneration. Active and passive forms of exercise can improve muscle strength and prevent muscle wasting in paralysed limbs. Meticulous foot care is also important, especially in diabetic polyneuropathy.”

    I have read many articles stating the remission IS possible with CIDP.

    Emily was dx’d at 4 years old, is almost 8 & has been on IVIG the whole time. She has improved dramatically over the last almost 4 years. She went from requiring about 200 grams of IVIG a month (20 grams 2-3 times a week) to now getting 20 grams every 3 weeks & she has gained 25 lbs since her diagnosis. She IS improving and I believe she will one day reach remission.

    I hope I helped some. Remember to not overwhelm yourself by trying to research too much too quickly. Take it slow because it is easy to get confused…I know I’ve been there!

    To get you started on your research I did a Google search for CIDP for you. Here is the link to many pages of links…happy reading!:

    [url]http://www.google.com/#hl=en&q=CIDP&aq=f&oq=&aqi=g10&fp=1To6P6USgX8[/url]

    Kelly

    #85056

    suewatters1
    Member

    I was in remission for about 18 months. I took Prednisone for 2 weeks in the summer of 2007 for my hearing and that helped other problems I had in my body and it improved my CIDP.
    This year earlier in the year I started having problems with my hearing and with time other things started to happen like having less energy then before and in the last 2 months the pain in my body has come back especially in my hands like 2 years ago. The test showed 11 days ago that I am in a relapse. So it probably started slowly at the beginning of the year because I last Sept my CIDP wasn’t getting worse and my hearing in Oct was better then Oct 2007. Now my hearing is worse then Oct 2007.

    So everybody experience different things with disease and nobody knows one day to the next what is going to happen.

    Wishing the best of luck

    Sue

    #85058

    ConnorZmom
    Member

    I’m curious to know if you have any residuals or lasting affects from previous “attacks”. I mean, do you have numbness or drop foot, can you move all of your toes…hands, that kind of thing.

    For me, I was diagnosed fairly quickly. I’d had back issues and epidural injections and then noticed numb toes. Three yrs ago that’s all I had…numb toes. Now I cant feel my feet, have drop foot and walk with a cane. I have the very slow progressive. Cant say I have R/R because I dont really have big episodes. I have had big episodes of severe pain…but not damage.

    Like Kelly said, research and also ask questions here. No two of us are completely the same. Some are much much worse, others better.

    I know the mad scramble for answers you’re going thru and the scarey uncertainty. Just remember, you’ve found some new friends…and we’re here to help any way that we can.

    Stacey

    #85078

    tara74
    Member

    I dont know the definition for RR. but I do know it remissed almost completely. the only residual is that I cant move my wrists and feet in one fluid motion just a jerking shaking motion. but two years ago I was even able to work out with cardio and strength training for three months and then I had a lumber strain so I quit. but this time it is very mild compare to the past

    #85113

    Dick S
    Member

    tara74,
    I think I read somewhere…

    80% of CIDPers are relapse/remitting over some kind of cycle
    15% are progressive, again at varying rates and severity
    5% have spontaneous and complete remission.

    Think about Relapse/remitting this way, The immune system starts attacking myelin and see’s how big the job is. You have myelin everywhere. T-cells replicate and start getting the job done. You get a relapse.

    Then, the body figures out that it is screwing up, and sends out the “repair team”. They hunt down and destroy the bad T-cells, and you recover somewhat. BUT… They don’t get everyone of them, and the cycle repeats. In some people the cycle is monthly, some every 3 months, I have read some here have had years in between attack cycles.

    The idea is to figure out what your cycle is and then have IVIG right before the relapse starts. Then you don’t have one, and stay better. IVIG is like an army of “good” soldiers that will attack the “bad” immune cells.

    In the progressive, there isn’t a big upscaling attack, nor is there a period of recovery.

    You sound like relapse/remitting.

    Also, CIDP is usually not as acute as GBS, so the relapses might not be as bad.

    #85031

    fsoprano
    Member

    Thank you for this post Tara74, the answers were very informative and when I get my second opinion next week I’ll ask a few of your questions as well.

    [QUOTE=tara74]alright I am posting all over the place but I want to know everything I can possibly know. so I was read fsoprano’a thread and dick s post said something about the beginning of the disease and wishing it were caught earlier. I am having a hard time understanding the general course of this affliction. there is not much anywhere on general prognosis. Mine seems to come in bouts the first acute, the second (one year later) lasted two weeks and the third (another year later) lasted six months and then went away for five years. it came back this last may. only the acute was treated the others went away on there own. poof vanished.

    is it like ms, where it comes progressive or relapse remitting. if it is RR then does it eventually go progressive. what is the general life expectancy. what are the statistics on ending up in a wheel chair?

    I know each person is different and generic statistics are not reliable but I have no grasp of what I am facing.[/QUOTE]

    #85131

    codystanley
    Member

    I just want to comment on Dick S’s reply. I might be one of the 5% who go into a “complete” remission because I have been in a remission for six years, eight if I want to count the two maybe/not sure years.

    If I’m remembering correctly, I think it is also 5% who find that no treatments work for them.

    #85134

    tara74
    Member

    so now my question is still can rr turn to progressive. I know with ms this statistically the way the course goes. let me go into detail on my patterns. 5 years ago it came on like a brick wall. it would come on for about a week and go away mostly ( maybe a few symptoms lingered) for a month. back and forth for 6 months and then poof it went away completely. now it is different. same symtoms but alot milder. I have good days and bad days good hours and bad hours but although milder, this time it is everpresent. I keep waiting for it to subside but it doesnt. I cant tell if the symptoms are getting worse, just that I was able to do more last month than I am now. it has been on for 3.5 months now. so fsuprano that is a question to ask or if I see my neuro first ill ask and then post what I have learned.

    #85176

    Anonymous

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