How did you present with symptoms of CIPD?

I will try and give you the timeline for my husband. He isn’t exactly a computer geek. I am.

January 5th 2011 he had a cracked tooth extracted. He had fallen skiing a month before and cracked a molar. The day after he had it extracted he was really really sick. In and out of it all day. He was thinking it was the pain meds.

The next day his back really hurt him. He started having night sweats. Soaking the bed. The his legs felt tight when he would wake up in the morning. He even got to the point he would get up in the middle of the night and walk on the treadmill to stretch them.

Then the tingling and pins and needles started. After 14 days he started walking like he was walking in mud. It got worse every day. By the end of January, he was walking with the classic waddle.

Beginning of Feb, they did an MRI to make sure he hadn’t hurt his back with the ski fall. Feb 18th he had an appointment with a Rhumatoligist (sp???). Luckily she was the wife of our GP. By the time we got home, we had a call from a Neurologist asking us to go to the ER. They did a spinal tap and he was diagnosed with GBS. They started IVIG that night. After 5 IVIG infusions, he was sent home to wait.

March 3rd, he fell at home. I couldn’t get him us. I broke my back 10 years ago in a rollover accident. We got him back to the Neurologist the next day. He was admitted to the hospital where the started 5 plasma pherisis treatments. They did nothing. Well, he actually had more energy, but kept declining.

At that point I was beside myself. He was released to a nursing home. He could only walk about 10 feet with a walker.

I used every contact I had and found a neuro-muscular specialist in Seattle and was able to get a cancellation with him on March 30th. By that time, my husband could no longer walk. His transfers were getting scarry. Someone had to be with him to keep him safe. That was about 8-10 weeks into the progression.

He was then diagnosed with Pure Motor CIDP by observation and emg/ncs. His sensory nerves are ok. That is a blessing. He doesn’t have pain, just pins and needles.

The Dr in Seattle ordered higher doses of IVIG weekly. We started that the next week. It took until the end of May for the decline to stop. 5 weeks into the IVIG.

He started walking about 2 months after the decline stopped. We were released from the nursing home when he could do transfers safely without help. His recovery has been quick. At least looking at it from this side.

But, he still has foot drop and absolutely no control of those feet. His upper body is doing pretty good. He can wiggle the toes on one foot about 1/2 inch. That is an improvement.

So, for us it was about 4 months down, and so far about 4 1/2 months up. He still has the tingling. His hands can now pull 50 lbs. They got down to 0.

So, that our life so far with CIDP.

Emily started waking up at night crying in pain. She said her arms hurt. We thought she was sleeping on them – she was 3 years old. This happened sporadically over about a 3 month period.

She received her 5 year shots, at 4 years old, in Sept 2005. A few weeks later she started complaining of her feet hurting. I remember the day she told me about the tingling. She was sitting at the computer, on my husband’s lap, and she said to me “Mom – my legs are tingly”. I laughed & told her they probably fell asleep. She never mentioned it again.

About 2 weeks after that I got a phone call from her preschool gym teacher saying she noticed Emily was dragging her leg in gym class. I called her dr & we went to see him the next day. He couldn’t find anything wrong, other than she seemed to run a bit slower than he would have expected. He referred us to a physiologist – it was a 3 month wait to get an appointment. In that time period she started tripping for no reason. She had trouble walking up the stairs. She was extremely tired & she had a few accidents at school – which was never a problem before. We also noticed she started choking on her food more.

Emily & I both received flu shots in November. Within a few weeks of receiving that shot Emily could not climb stairs, jump, walk on her toes, etc. Christmas Eve 2005 we woke up to see her right eye seemed to have become a lazy eye. We decided we would take her to the eye dr after Christmas – since everything was closed for the holiday.

December 27, 2005 she woke up & had very little strength. She couldn’t even lift a spoonful of yogurt to her mouth. We took her to the dr. She had no reflexes & couldn’t open or close her fingers. We were referred to a neuro & the next day we met with him. He did an examination of her & sent us straight to the hospital.

Emily had a MRI with & without contrast of the spine & brain & a spinal tap. December 29th we were given a possible diagnosis of GBS but they needed to do another MRI because she had a very small Chiari Malformation. That was ruled out & she had her 1st IVIG treatment on 12/30/2005 & her 2nd the next day & then we were sent home. She could run & jump after that 2nd treatment.

She then received IVIG treatments once a week for 3 weeks. We thought we had beat it!

In the months following her right eye turned completely in looking toward her nose. She had a relapse (she tripped over nothing) in March 2006 & was re-diagnosed with CIDP.

It took an immense amount of IVIG to get her eye repaired. Then it took even more IVIG to get her stable.

Nearly 6 years later & she looks like a normal kid.

Kelly

wow kelly—i never knew all that about Emily—how hard that must have been for you, she was so young.

Mine started very slowly,tingling in the toes, muscle cramps in my legs at night. I was working, raising 3 children, running 5 mi a day every morn. exercising etc so just blamed it on all the above. this went on for a few years. In 2009 started with the weakness in calves, noticed i couldnt stand on tip toes or heals. diagnosed in may of 09, started ivig in june 09. Lori

Lori – Thanks for the kind words. They really mean a lot to me.

It was a difficult time for our family. I am wrought with mother’s guilt over the whole thing. I used to lay in bed at night & beat myself up over not doing something sooner – not knowing something really was wrong. Then I remind myself that who would have thought a child would get something like CIDP. I had never even heard of anything like it…other than MS.

I think that is why I’ve been so passionate about helping other people here. I remember feeling so helpless…hopeless…that I don’t want others to feel that way either.

I think the difficult time we went through just makes the present look even sweeter though. I can say my daughter has truly been a gift to me.

Kelly

Kelly, I can not even begin to imagine the pain and anguish that you have gone through. Patty was 3 month old when we found out that she was deaf. Carolyn and I when down a similar road of ‘what if’. But that was some thirty plus years ago. Long story short, she graduated from Flagler College in San Augustin FL and is now teaching in the Atlanta School for the Deaf. Along the way she has pick up a Masters Degree and Doctorate. Emily sound like she is an amazing child. Who know where she will be in thirty year.

I first noticed a discoloration on both lower lags beginning ~ 1995 or so. A few years latter I was having problems walking over rough terrain. Somewhere around 2002 or 3 my feet began to “tingle”. This slowly progressed to the point that my Primary Care Doctor sent me to a Neurologist. Luckily he knew something about CIDP. In December of 2004 they did a spinal tap that showed a high protein level. I was refereed to the University of Alabama at Birmingham for further work up. After a nerve biopsy I was told that I was now a member for a very exclusive club consisting of those who had CIDP. That was January of 2005. Things slowly deteriorating. Now my hands are going south and I’m having a hard time concentrating of course that could just be old age. :rolleyes:

Jim – I’m very sorry to hear you are deteriorating. It hurts my heart to know people are suffering from CIDP.

I think it is amazing that your daughter has done so well. I think it has to be a true testament to how great of parents she had!

Thank you too for the kind words. I was a wreck for awhile after Emily was diagnosed. When she was in the hospital & they were testing her for everything under the sun, I remember being so afraid she had something life threatening. I think it’s the not knowing that is so scary. When the dr’s came into the room & told us they thought she had GBS my first words “So she’s not going to die?”. UGH…it’s hard to even remember it.

I just hope that Emily’s story can give comfort to other people, especially moms of CIDP kids. She was in a really rough spot for a while but man…she has come out OK. (KNOCK ON WOOD!) <----can't forget that part, LOL Kelly