Working with CIDP

General General CIDP Discussion
1

Hi,

I was diagnosed in April 2011, and since then I’ve been getting monthly treatments of IVIG (60 grams). When I got the first treatment I ended up In the er because of the rate the infusion was administered. Now my infusion takes 9-10 hours and I am unable to sleep after the treatment, at times I’ve been awake for 24-30 hours…I believe it’s do to the medrosolution.

Before I was diagnosed I was getting physical therapy in both hands, then I had carpal tunnel surgery on my right had. After the surgery, I continued to see an orthopedic for my left hand because I was losing motion and strength. After many MRI’s, I was referred to a neurologist. He did many emg’s where it displayed something with f waves. I was defitnetly displaying signs of peripheral damage. For a moment the doctor thought I had ALS (dear Lord!!) I thought I was going to go crazy… Then he sent me to his colleague in USF, and she was able to diagnose me the same day, and to confirm her findings she did another EMG’S (yeepie).

In my last follow up appointment, the doctor told me she wanted me to start a treatment called plasmapheresis. She said she has a couple of patients doing both (IVIG and plasma) with good results. Well, I started the plasma treatments last Monday 1/16/2012 and so far so good. The only side effects I’ve had are low blood pressure, fatigue, and my legs get really heavy and tired (but I was told the leg pain is due to the condition not the plasmapheresis)

Now I’m struggling with the decision to return to work. I took two weeks off to do the treatment, but now I want to give my body the opportunity to heal it self without stress, and I do not want my treatments to be scheduled upon my availability at work…am I wrong for feeling this way? As of now, I have difficult time typing with my left hand, and since I over compensate with my right hand it gets swollen and numb. At times I work 10-12 hours because I don’t know how to say no at work. I really need some advise…is it difficult to have your doctor state i need to take a leave of absence due to my condition?? Is this possible.

Please let me know your thoughts and if you have been in my shoes what have you done.

Thanks for all your help and support!

God Bless!!

Barbara

2

I work full-time - usually 10 hour days because I work a four day week instead of five 8 hour days. I get my IVIG every 21 days. I also have a young daughter who is 8 and very active. I find it VERY hard to work in my infusions between dance class, gymnastics, girl scouts, religion class and of course my full-time schedule. But not working is not an option for me at this point. I carry the insurance that covers these expensive infusions. There are many days when I wake up and don't want to go to work...especially in the beginning when I was first diagnosed. But I get up and go about my day. I guess I also want to make my life seem as normal and close to what it was BC (before CIDP). I think keeping my work schedule has made me feel a little bit more like my old self. Yes, some days I ache and feel depressed but I try to cheer myself up and tell myself that feeling sorry or depressed is not going to make this darn CIDP go away. So I get up and get on with my life. I do schedule my IVIG infusions at 7 am on Sunday mornings so that it doesn't interfere with my work schedule or too much of my weekend. My daughter is getting use to me having to be gone on Sunday mornings more and more. She use to complain about all the time I need for this (I tried to explain to her that I need the medicine - i think she is starting to get it). I guess my advise is if you can work and you want to then give it a try. Maybe reduce your hours at first until things calm down. Maybe you can find an infusion center with weekend or evening hours. I would love evening hours but no infusion centers in MN do evening hours that I can find...i called them all. But at least I can do weekends. I was using up all my PTO time in the beginning having infusions and tests....tests...and more tests done. I felt like I never got to just take a day off and enjoy my PTO for anything other than CIDP. Now i am finding a way to live with CIDP and trying very hard to return to some type of normal. Good luck.