i’m soon to be 42 and have had gbs now for 39 months. i have problems with what people tell me or what i have done.i can’t think of the proper word alot of the time for an item. i cant remberer to tell people everything so i call them a few times a day like my mom, sister, or aunt. i still take my meds for gbs and pain. i dont know myself what causes this memory loss.
Before I came down with CIDP in 2002, I prided myself on my memory & my mind in general. I was teaching high English & math in the upper grades, as well as totally controlling every aspect of our household & children’s lives. Helping them to pick their college schedules, managing their rent, tuition, etc. Right when I got hit I was immediately put on 3600 mg of neurontin a day, as I had extensive nerve damage from the beginning. I have always wondered if my memory problems are from the neurontin, the CIDP, or just the fatigue I battle daily. But switching to Lyrica would not really help me out, & I can’t imagine what my life would be like without neurontin; unbearable, I am sure.
But the question originally asked on this thread was “How bad can CIDP get?” My answer is it can get very bad, especially if left untreated. Even though I had treatments when I just had some numbness on the bottom of my feet & my hands (I could still walk & my hands were working OK then) I still deteriorated to quad status. I woke up one morning, just a few weeks after getting 5 PP treatments, unable to walk at all, couldn’t lift my arms up, & had virtually no use of my hands. I would remain this way for over two years, & still suffer from a poor recovery. That was after many IVIGs (over 40) weekly & also weekly solumedrol. So I advise you to get treatment for your husband ASAP, as one can go downhill very rapidly with this illness.
I wish I knew the real answer to this question, it has been brought up many times through the years & I know that many of us have it. I used to be a math (and English) teacher when I came down with CIDP back in 2002 at the age of 48. I no longer attempt even my checkbook without using a calculator. I struggle to find the names of even the simplest things, & forget about my remembering names.
I am on 1800 mg of gabapentin (generic for neurontin), but I don’t believe this is the reason. I am aware that I am worse when I am fatigued, but I also have these problems during the daytime. I wonder if there isn’t some kind of CNS involvement for some of us, as I know my eyes are not the same, nor is my ability to swallow. I hope there are a lot of posts on this subject. In the meantime, listen to your son, I don’t think this is a case of selective memory.
Since I was on klonipin for 6 years before even coming down with CIDP & at 3 mg a day, I feel like I know quite a bit about this drug. I was a high school English & math teacher, also taught Adult Ed for 4 years right before getting CIDP & had absolutely no memory loss. This all did not start until after I had CIDP. At first I thought it was the Neurontin I was taking (originally 3600 mg a day), but then weaned myself down to 1800 mg a day within the first year. I don’t believe it is the neurontin either, as many have posted about memory loss who have no nerve pain & have never taken this drug. I think it is the CIDP, caused by the fatigue that goes along with it. The more rested I am, the better my memory is. I cannot stress how much rest is needed with having CIDP, it helps us in all areas (muscle weakness, strength, speaking coherently, memory.)