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