Reply To: New To This In Huntsville, AL

Anonymous
December 17, 2013 at 1:35 pm

Little fireworks going off, mostly in my feet, but occasionally in my legs and hands, increased after I began treatment, but have begun to subside as I reach 6 months of infusions of IVIG and Solu-Medrol (methylprednisolone), every two weeks.

I too went through months of testing, after a couple months of trying massage and chiropractic to alleviate the pain, before I suggested to my neuro that it might be CIDP. My reflexes took a while to completely fade, which is why he hesitated on his diagnosis, but as soon as it was made we began IVIG infusions.

I’ve been out on short term disability from work for 3 months, now. I have recently added long term insurance to my benefits from work, just to be safe. But, my follow up with my neuro is a month away and I’m hoping he will release me back to work, even if restricted. I know I have used up my FMLA leave and I’m not sure when it renews. I hate being out of work, especially at 60% salary and the boredom is maddening.

I also paid a lot of money and met my max deductible quickly as 5 MRIs, CT Scans, Xrays, EMGs, Myelograms, and spinal taps, plus prescriptions for pain meds and bills for IVIG (Wow…that’s expensive!) quickly added up. For the last few months I’ve had no deductibles for treatments as it’s 100% covered…until January, when we get to start all over again.

This is frustrating for the patient, the caregiver, and friends and families. We patients can begin angry and afraid, feeling trapped and demanding to know, “Why me?!”, but caregivers help us by just being there and helping us in and out of the chair, helping us trim our nails or open the water bottle, when we can’t. And commiserating with us. Sometimes we just need a shoulder to cry on and if you cry too, it’s okay. We need to know we’re in this together.

At some point we begin to realize this is truly life changing. I’m not the old SSS anymore. I have a new life with new challenges. But, I can see light at the end of the tunnel. I regained hand and arm strength and started Physical Therapy and got AFO braces to support my weakened ankles. Now, I can walk further than ever and no longer need the motorized shopping cart at the grocery store. I keep my cane handy, though, and still have my wheelchair for long trips in the mall etc. But, I can manage to go do things on my own now and that’s an amazing thing.

We are not alone. We’re all here experiencing this thing and we can share our experiences and ask each other questions. The key is to keep a positive outlook during the critical new phase. Holding on to anger and frustration causes stress and that never helps the healing process. Good luck to you and your husband.