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Hi Micahsmom,
I too am 36 (diagnoised 3 yrs ago)
dont have too much experience re relapses as have continued on quite a lot of treatment since diagnoises 3 yrs ago. everytime we ahve tried to reduce treatment I have relapsed – the severity has depended on as to how long i have let my symptoms progress befroe getting back onto the full treatment( ah yes am a bit stubborn and tried out the ‘burying my head in the sand’ approach to see if that would work!!!)
Last official relapse is exactly a year ago – when we tried reducing just the pulse methylpred (stayed on the ivig and immunos though) and went from running a half marathon one week to needing 2 arm crutches to walk 2 weeks later – and then really i should have admitted defeat and taken to the wheel chair again – oh but did i mention i was a little stubborn!!?? 😉

all the best – enjoy your precious baby! (I was still breastfeeding when CIDP chose me)

I cannot imagine being pregnant with this. Bless your heart. My daughter is 4 years old with cidp and has had it since she was 2. She went a long time w/o tx and finally was put on weekly ivig until she returned to baseline and then spaced to every two weeks. She is now at every 3 weeks. She also has arthritis as her cidp was brought on by a virus. What kind of tx have you received? Please tell us more. Pamela

There are no cut and dried answers to your concerns.

By all indications CIDP is similar to the energizer bunny. It just goes on and on. But, every case is unique.

You say you waited a long time. For me it was more than 30 years between first symptoms and diagnosis. Here’s what I consider the bottom line: If it’s been so long that you get muscle loss due to axon degeneration, there generally is no recovery for those axons. And, therefore, no recovery for the affected muscles.

For those portions of your nerves that have not yet suffered axon loss it is imperative that you receive treatment immediately.

I have had remissions (got better, or, at least no worse) followed by further declines. Even prior to starting IVIG in 2008 I had spontaneous recoveries followed by declines. On at least three occasions, over the years, I could no longer hold a pen, grasp and pull a zipper, or turn a key in the lock, with either hand! Any lock- car, front door, dead bolt, you name it. But, I did recover those functions, to a limited degree in my left hand.

What can you do? Confirm your diagnosis and get treatment.

Good luck.

hi

i am 46 , i was dx in june of this year. i too am very stubborn and rufused to go to the hospital till i could hardly walk or lift my own arms. that was at the end of may. i was first told it was GBS. went thu 5 days if ivig. i relapsed at the start of july , got another 5 days of ivig.dx changed to CIDP, relapsed at the start of august this was the worst one i couldnt dress myself , was unable to stand in the shower or even lift my arms to wash my own hair. im now on 100g if ivig every two weeks. and have started chemo.

the docs have no idea what triggered my CIDP

Keep fighting … I AM

Roland

Hi Michelle,

I am in my mid 40’s. I have been dx’d with CIDP for about 8 years, although I had a paralysis of both arms prior to diagnosis. It was a matter of getting to the right neurologist and that took almost 2 years. So I have had the disease (known) for about 10 years.

I have never had a relapse as serious as my first 2 paralyses, but I have never been in a “remission” either. I get IVIG every 2 weeks (used to be every 4, but I couldn’t any longer tolerate 2 days in a row of such a high dose). Now I go once every 2 weeks.
About 4 years ago, I felt better than I do now (fatigue is huge!), but as I said never remissed.

Try not to get anxious about a flare if you haven’t fully recovered yet. It is a very strange disease, not the same for any 2 people. You need to avoid stress as much as possible. Worrying about what hasn’t happened yet, won’t help you.

What were your initial symptoms? And what has your tx been since being dx’d?

Take care,
jdunk

Jdunk. Did you get full use of your arms back?
I had a bad first attack and have severe axiom damage in my legs and hands. After my first round of ivig we slowed the disease down and three years of regular treatments the progression never stopped but slowed down a ton.
In July 2010 it hit hard and ivig was no longer working. I am now on chemo combined with plasma exchange and sumadrol.
It has gotten to the point where I am now off work, at least for the next 6 months as I go through these treatments.
I think we are all unique in how this disease progress’s I know some people who have initial attack and it goes dormant and never pops back up. The best view in my opinion is to embrace life, the activities you do, and adjust to any limitations you have.

[QUOTE=dieno]Jdunk. Did you get full use of your arms back?
I had a bad first attack and have severe axiom damage in my legs and hands. After my first round of ivig we slowed the disease down and three years of regular treatments the progression never stopped but slowed down a ton.
In July 2010 it hit hard and ivig was no longer working. I am now on chemo combined with plasma exchange and sumadrol.
It has gotten to the point where I am now off work, at least for the next 6 months as I go through these treatments.
I think we are all unique in how this disease progress’s I know some people who have initial attack and it goes dormant and never pops back up. The best view in my opinion is to embrace life, the activities you do, and adjust to any limitations you have.[/QUOTE]

Exactly, I agree 100%, that is all we can do!!

Yes, dieno, I did get 99% use of both arms back. It took 12 months for the first one. Then I had another episode on the opposite arm and it took about 10 months for that one to come back (treatment had been started at about 8 months into this though).

Now, I just have the typical neuropathy sxs, pins, needles, numbness, weakness, but they are functional and not visible impaired. I do shake quite a bit, but most people don’t notice it.

I am fairly new to the disease even though I probably had it a long time (15+ years of weird symptoms) but it was not diagnosed until I had a nerve biopsy in June 2010. Other blood tests were abnormal but the local doctors (even a local neurologist) could not figure it out. They thought I had lead poisoning, lyme disease, MS, RA, lupus, etc. So I was referred to a neurologist in Dallas with a lot experience in neuropathies. BINGO!!! I am currently on IVIG (gamunex) every 4 weeks. It seems to be working, so far. I have gotten some feeling back in my feet and legs. Most of my toes are permanently damaged so I can no longer move them because I had gone so long without treatment. I was 59 when I was first diagnosed and it most likely started when I was in my 40s. Luckily for me the disease progressed very slowly until a few years ago.

Having raised 2 sons and now have 7 grandchildren I can only imagine how difficult it is to take care of a baby while having this disease. As a grandmother I wish I had the strength to babysit more, but it totally wipes me out and I cannot do the things that healthy grandmothers can do. This forum is an excellent outlet for all of us. It helps to “talk” with people who truly understand….

Hang in there and give that beautiful baby a kiss for me.