I've just spent the past four days in Vanderbilt hospital. I went to the ER early Monday morning as my breathing had been worse and I had not been able to sleep lying down over the weekend. Sleeping in a chair wasn't working. I am home now waiting on delivery of a BPAP machine which will help me breath in and out when lying down to sleep. It took that long for the insurance company to approve because they wanted certain tests conducted before they would approve it. So I had an in hospital BPAP for the past four nights. Oh, i'v slept wonderful and feel great. The most amusing thing is four days of hospital was a LOT more expensive to the insurance company than if they had just approved the BPAP. Ha!
I was put with a Neurology team that morning, a team of 7, and underwent an MRI, XRAY, lots of blood tests and another EKG. The EKG was done by Dr. Christoper Lee, Vanderbilt Associate Professor and ALS specialist in their Necrology clinic. As we concluded he was showing me my response times and discussed the difference between ALS and CIDP that the test can reveal. My response times for muscle groups that were still working, even if poorly he considered normal. Then during the last phase of the EKG when they are monitoring the sound and looking at the scope, they were seeing the normal 1 hz rhythm of the body to the muscles. When I added a little tension to the muscle group, like trying to lift my foot or flex a bicep, the test showed that other nerons were not firing off to assist. He said that when a muscle goes under load, it talks to other nerons or was it axions(?) and asks for help to lift the load. ALS ruins that talking.
So at the end he explained that I had ALS. Now all of you don't fret over this could be you. Please! My condition has fit CIDP except for very rapid weight loss (4 pds per month), rapid muscle loss each month, and the breathing problem that started when I couldn't sleep on my back around Christmas on and off. That continued to get worse through last week when it developed that I could no longer sleep on my side. No sleep lead me to the ER.
The wife and I figured I had ALS back around Christmas and have been talking about that and making plans no matter what the Dr's thought. My rapid decline was not matching anything you guys go through in so many areas.
So don't fret. You will all be fine. CIDP DOES NOT lead to ALS. As all of you know, it takes a while to be diagnosed with CIDP and that fit initially. However my symptoms continued at a brisk pace.
I think you can tell we were not surprised nor am I depressed over the new diagnoses. I'm upbeat and can still get around OK for now. I just know my days are numbered and will be putting in for retirement disability on Monday. I am lucky to have dual insurance now and when I will be on disability as I am retired US Navy. Also the VA will take me on now as ALS is considered a covered disability by them and that would cover dang near everything even if I didn't have medicare on retirement. That's a relief for all the stuff I will need for my caregiver as things grow worse.
So I'll be leaving this forum. John, JC, and Eric thanks for inviting me as a moderator! And thank all of you for the hugs, discussion, information and support. There are just so many wonderful people here.
Hugs to you all and God Bless. Well, I've things to do! I'll check back a time or two for comments and then move on. Bye!