Reply To: Hello from Houston

February 23, 2017 at 9:58 am

Hello there Jeff,
May name is Amarie and I am also right here in Houston. Symptoms began in June 2016 and by the end of July, I was in a wheelchair. I was diagnosed in Aug of 2015. I was on IVIG for 1 year and 3 months at 2 wks, 3 wks and 4 wk intervals. The infusions began in Sep 2015 and it was not until about January of 2015 that I truly felt a BIG difference. It was very slow and steady for me. I had to gradually change my activity level to match the progress of the healing. It’s easy to push the muscles too far. I would often feel as though I was relapsing but the EMG showed no further damage. Through the treatment I still had to struggle with pain, muscle fasciculations, numbness, tingling/stinging, etc. and even days to weeks of increased pain in my legs. It would come and go. I did regain strength and balance though. I was advised by the neuromuscular neurologist to “not panic” and that some of these residual symptoms will be transient. He wanted me to especially pay attention to my strength level. Sometimes it can be difficult because the pain, tightness and heaviness in my legs particularly can make me feel weaker but so far every time these symptoms have increased (whatever the duration), they have also decreased and I’ve felt better. In December of 2016 I received my last infusion. March 7th, will be 3 months off of IVIG. Needless to say, I’m concerned. I don’t want to relapse. I’m having to remain as calm as I can and coast through some of the increase in symptoms. I can still walk, drive and feel okay but I do feel as though I’ve lost some strength overall but I’m no longer getting the extra antibodies, etc from the IVIG so that is to be expected. I did have to stop working (at the age of 45) but I could no longer handle the all too frequent calling into work to tell them that I couldn’t make it in. I did manage to make it back to work in Oct 2015 and struggled with working til’ recently. I am just hoping that with much needed time away and more healing that I’ll not have as much pain or residual symptoms. I know every case and individual is different and we all experience CIDP in different ways but one thing is key and that is to communicate with your DR and be aware of your body. Eat and live as well as you can. It is wonderful that your wife is with you. It feels lonely when we are diagnosed with this and it is only rare when it is not us. There is a CIDP support group meeting in April (Houston Chapter of GBS|CIDP Foundation International , you can find them online and see if there is are tickets remaining). Take care Jeff,