Just trying to understand

Once I started IVIG, recovery came slowly but continuously for me. There wasn’t any single day I woke up and said, “Wow!” Instead I just noticed that things were getting gradually better over several months. Even today, several years later, i’m on treatments at a six week interval and I still feel some deterioration as I approach the next round. I hope this helps.

It is important to reduce stress levels for best overall health and recovery from any condition.

The rate of recover from demyelination and axonal damage, if any, is very slow. Of more importance are factors such as how long from symptom appearance to first treatment. Consider the results of a 5 year study:

“Conclusions- The long term prognosis of CIDP patients was generally favourable, but 39% of patients still required immune treatments and 13% had severe disabilities. Mode of onset, distribution of symptoms, and electrophysiological characteristics may be prognostic factors for predicting a favourable outcome.”

And this from the National Institutes of Health:

“Complete remission, partial remission, and severe disability have all been reported.[6] Some people may have a “bout” of CIDP followed by spontaneous recovery, while others may have many bouts with partial recovery in between relapses. Some people are left with residual numbness or weakness that can lead to reduced quality of life…”

It is important to follow your doctor’s treatment plan and focus on what you can do. As stated above, you’ll look back some day in the future and likely say, “Oh, I can do these things again.” Please do not expect it’s like taking a pill and getting better tomorrow. It is not.

I don’t think I got really scared for my daughter until we were doing IVIG treatments and the symptoms kept worsening. NOTHING happens fast with this disease, so take a deep breath and let go of timelines and deadlines, it will only frustrate you both. She did finally start to respond on about day 4, but we still struggled with symptoms returning in between her monthly treatments for the first 10 months. She’d be fine for 27 days, then couldn’t walk those last few days before infusion.

It’s takes a while for what we call the “good army” to amass the strength to wage a real war against the “rogue antibodies”. If you’re on steroids, that suppresses the growth of both the bad guys and good guys, so it takes longer to build that army of good antibodies. Until the good guts are big enough to wage a solid battle, it can feel like you are not getting your money’s worth out of these treatments. You are, just hang in there.

My daughter’s onset was at age 11 in August of 2015. Diagnosis didn’t come until May of 16, when we did 5 days of inpatient IVIG. We returned in July to get a final CIDP diagnosis, did 3 days inpatient infusion and have been doing monthly IVIG for 16 months. We are fortunate enough to be at the point where she is ambulatory, back in middle-school and we are doing infusion treatments at home over the weekends. It’s a livable life, and that’s about as far ahead as we think, right now.

Welcome to the family, sorry you get to be part of this club. Hold your family tight this holiday season and when xmas of 2018 comes around you will be amazed at how far you have come!

It really depends at what stage you start from. At my worst, I could barely walk and was collapsing.

Five days of IVIg this January got me walking by the 6th day and I improved over the next month.

I topped out at 80% of my former self. From late February through March I started to decline and needed a cane to get around.

I got another 5 days of IVIg in early April and it barely made a difference. (I think they administered it way too fast).

I changed doctors and got another 5 day round in May. It was administered at a much slower rate. During the next few weeks I felt my core strength return. I felt like I returned to 85% of my former self.

Since then I get biweekly tteatments of IVIg.

At best, progress is incremental. I’d say I’m 87% of my former self. It’s progress, but so frustratingly slow.

Then, there are the ups and downs. CIDP recovery for me is two steps forward and one back.

At the end of the day I’m exhausted and stress brings back numbness in my hands and in my legs.

So hang in there and come to grips that recovery is a long curvy road with speed bumps and a frustratingly low speed limit.

Frustratingly slow is a mantra we know. Two steps forward and one step back is a familiar dance too. But I love “long curvy road with speed bumps and a frustratingly slow speed limit!” My daughter has the desire and sometimes the energy to want to work harder or get better faster, but then we have days like this morning. It took an extra 15 min to get my daughter moving this morning. She’s stiff and in pain from last weekend’s infusion. We’ll have 2-3 more tough mornings, like this, then she’ll hit a good stretch of mornings.

It’s a disease I wouldn’t wish on anybody. We keep a blog here: http://www.pragmaticturtle.com I try to post the things that have worked for us to share with others.