Demyelinated not Destroyed

I don’t usually put two “Living with CIDP” posts back to back but I had an appointment with my neurologist today.  Since I want to give everyone an accurate view of how CIDP affects my life, I think it would be helpful for me to blog about my various doctor’s appointments.

But first, a little background.  Dr. K is the fourth neurologist I’ve seen over the past five years.  I’ve been a patient of his for over a year now.  I was first referred to him by my family practitioner because Dr. K specializes in diseases that cause demyelination.  Dr. K is hands down the best neurologist I have seen to date.  I’ve spoken with some of his other patients and they all agree.  I firmly believe that if I was seeing a different neurologist, I would still be stuck in limbo-land and be without a diagnosis.

Dr. K was actually running on time today.  I think that’s the first time since I started seeing him for my CIDP that he wasn’t behind schedule.  While some people might get annoyed at a doctor running an hour behind schedule (which is common with Dr. K)  I don’t.  The reason why he runs behind is because he spends all the time he needs with each of his patients.  When I see him, I know I won’t be rushed out of the exam room.  I just bring an extra book or two with me to read while I wait.

Today was my second appointment with him after I received my diagnosis of CIDP in July.  It’s my first after receiving my first round of IVIg treatment.  So far, I feel pretty good.  This is the best I’ve felt in roughly three years.  The tingling and numbness in my hands and arms has drastically reduced.  The tingling and numbness in my legs has stayed fairly steady.  It’s the first time since my body decided it needed some demyelination that my legs have felt worse than my arms.   I’ve had a couple days of weakness this week that has me a bit worried.  Otherwise, it’s so far, so good.

We discussed when I should receive my second dose of IVIg.  It’s going to be tentatively scheduled for two months from now.  I’m going to receive it at home next time, which will be a huge blessing.  I can curl up on my couch and sleep, watch a movie, or read when I’m getting it.  The outpatient center I received my first IVIg dose in was nice but I’ll definitely be more comfortable at home.  Since I handled the first round of IVIg like a champ, I’m going to try to get my IVIg infusion over three days instead of five.  Doing so ups the chances of awful IVIg side effects like migraines and joint achiness but I’m willing to take the risk.  I can always go back to a five day infusion rate if I don’t handle it well.

One of the things Dr. K stressed to me today was that because of my CIDP, the demylination that’s been caused, and the various muscle damage I have, my endurance will never be the same.  I’ll tire more quickly now, something that I’m definitely aware of whenever I even slightly overdo it.  He told me to listen to my body and whenever I start to get shaky or feel weak to rest.  If I don’t, I’ll exhaust myself.

Even though I know Dr. K is right, it’s still hard to hear.  I’m 30 years old with three children all under the age of 10.  I want to be active in their lives.  I want to be a Room Mother and go on all of their field trips.  I want to sew costumes for the Christmas play or act as a coach for the sports teams at their school.  I desperately want to do all of these things but I can’t.  I have to carefully balance the things I need to do and the things I want to do.  If I don’t, I’ll push myself too hard and then I’ll be no good to anyone.  Thankfully, I have good kids who understand that mommy’s sick.  I just hate that they have to be understanding.

My next appointment with him is in two months although he did tell me to call if I started to get worse.  Still, all in all, Dr. K and I are optimistic that I’ll keep improving with time.

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