It's been too long since I have posted anything...
We have had a lot going on...
My husband, Kelly, has been diagnosed with CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). I am sure most of you have never heard of this before. He has lost most of his feeling from his waist down. He has a hard time walking, can no longer drive, and is now is almost constant pain. As of a couple of weeks ago, he is having similar issues with his arms from his elbow to his finger tips.
I want to share our experiences. There is not a whole lot floating around the internet about this rare auto immune disease. Part of that is because it is rare and there are a lot of unknowns.
I have read some other blogs from the perspective of those suffering from CIDP. I want to share his story and mine. I might not be able to update as much as I would like too, but I will try. I desperately need the release! I will also continue to share recipes and fun stuff also.
SO here we go...
In January Kelly started noticing some numbness and tingling in his legs. He didn't think too much about it at the time. He has been having issues with his neck since summer of 2012. He was seeing an ortho doc on a regular basis for these issues.
I noticed he was having issues in February. He stood up one night getting off the couch and stumbled. It wasn't your normal, sitting too long stumble. It was more of a my legs don't work/aren't there stumble. I asked him what was going on. He responded that his legs were numb and had been for the last few weeks.
Being the great neuro nurse that I am (please read that with your best sarcastic voice!), I immediately did a neuro exam on him ( I really and a nurse and I really do work in the Neuro unit!). He didn't have any foot drop (thank goodness) but he was definitely weaker. Luckily he had a ortho appoint in a few days. The ortho doc took x-rays of his lower back and ordered a MRI of his thoracic and lumbar region.
Once the scans came back, the doctor didn't see anything that would explain his symptoms. We, of course, were assuming/hoping that he had a bulging disc that might be causing them (and not anything more serious). Especially since that was part of the issue with his neck and why he was having so many issues.
He referred us to a neurologist (by this time it was May and Kelly had started using a cane to walk). The neuro doc wanted him to get some more tests including an EMG. We were scheduled to come back to see the doc a week after the EMG.....were, but the doc came in and told Kelly he would see him first thing the next morning. Apparently his EMG was one of the worst he had ever seen. He said he knew without a doubt that Kelly had CIDP.
He gave us the option of doing a couple more tests or starting treatment right away. He said the tests wouldn't tell us anything he didn't already know and they would mean delaying treatment....even longer. We opted for treatment. He started him on Prednisone 100mg daily for 1 month.
When the month was up we went back in for a check up. The Dr thought Kelly had more strength, but was still having sensory issues. He gave the go ahead for him to start IVIG treatment.
So far he has had one treatment. The first treatment is run in slower, over more days, due to the risk of side effects. On day 2 of 5 Kelly started to get a bad headache (common side effect), so they slowed his rate down even more. Another side effect of the IVIG is fatigue. By the end of the week, Kelly was exhausted (even more so than normal, since fatigue is also a symptom of his CIDP)
We are now almost 4 weeks out from his first treatment. He hasn't noticed any improvement and I think he is stumbling more. He had a check up 1.5 weeks ago and the Dr still thinks his strength is getting better. He thinks the main issue is the sensory part. He ordered physical therapy (2x a week) and another EMG. He wants to looks at actually numbers to go with his physical assessment and see if they correlate.
The EMG is scheduled for this Friday 8-15. I am assuming Kelly will be scheduled for another round of IVIG. I have read/heard that it often takes a few treatments to see any progress.
CIDP is different for everyone. There is no cure. Hope is to slow the progression. Some people have periods of remission/relapse (I don't see that being the case with Kelly). There is so much unknown.
So that is pretty much where we are now. I will try my best to keep updates coming. Please feel free to ask any questions.
I would greatly appreciate any thoughts, prayers, good juju, or any positive energy that you all might want to send our way.