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!

Joe, thanks for being a part of the community!

Wishing you courage and strength to wishes, Joe!

Joe - Thank you so much for all that you have done! So very helpful and caring. Found an ALS community out there if helpful - - if you don't find one that is suitable for you, let us know.

Wishing you the best,


Wishing you the best Joe!

Hi! I am so sorry to hear the results of your story. Something that needed to be shared, so others don't go with a misdiagnosis. I pray that you find Jesus Christ as your Lord and Savior. You can be in heaven with a new body and have eternal life. John 3:16

God Bless you.

Hi Joe, so sorry to hear of your new diagnosis. You will be in my thoughts & prayers.


I am sorry to hear about this change in diagnosis. Thank you for being a part of this community. You will be in my prayers.

Hi Joe. Your courage and attitude are truly an inspiration to everyone here. Good luck in your journey.

God bless you and your family, Joe. You have a wonderful attitude. Thank you.

Joe, Your in my thoughts and prayers. Your such,an inspiration and I truly pray for your healing

I won't cry but I will miss you so much you have been there for me too even the short time I've been here. We had so many things simular going on that you and I could relate too with out breathing, and our feet and walking up and down the stairs. So much.

I am so sorry of your news but at least you now know. I don't know what it is but even bad news somehow at least for me is better knowning then be searching at least you seem to have great doctors and take you seriously and they are good.

I hope whatever you now have all the health care you will need that is one of the biggies people seem to worry about.

I hope your wife is doing ok with this as best as she can....I am sending her staying by yourside big hugs she is a great wife to stand by your side.

I think you should still as long as you can come here and let as you say come in a few more times....just because I think I will always be wondering about how you are I do hope you do come in more just the same. Just some lable is all is here you know....look at me I never been told really what is going on....I been told as of even last week I am a hard you see I hope as long as you can you will keep coming in.

As for the insurance finally giving you the BPAP machine like you said it would of cost them lots less, but maybe God knew you needed all those tests see. So happy you are breathing easier now. I have one too. I had mind since 09. I have the air bleed thru also. I'm sure they are doing that for you.....Gosh that is great news

I wish you could tell me even if it sounds weird....your doctor goes over the results mind never one did/ I think you are so lucky in that you understand what all this wiggle lines mean....not have to ask for the report and try to understand it without someone going over it like you had...YOU are so lucky to me for that fact.

I have three pages and writen report I haven only the words that I took and went on line to try to fig out what it was they were saying....I hope with the new doctors they will be like yours so much so.

I could feel most of the shocks on top of my skin, I didn't see where they put the peaces of tape like proves my husbnd block it for me...yes it hurt a lot when shock....but when they did the needles and shock my legs never move...that is the part that baffles them to peaces.

I just wish someone like your doctors would of been more thruo and told me more....instead they think somehow I could on my own stop the my legs from moving can you beleive this? I can' I started mis believing....even thinking worse things and that I don't have nothing wrong with me. Only thing in their stupid report said they couldn't explain my drop feet......why worry I told myself if that isn't a concern to these stupid doctors.

I couldn't tell anyone how I felt....but I been upset lately for a while.

Don't until I press these speical 7 doctors on that list for one to see me....I don't know if I will find the same kind of help you found........I might never really find out why I fall down, or not able to walk time to time...

and I was in the ER my self twice two weeks ago....I haven't stop having tummy problems lately and I'm not able to stop with the pain they dont' know why yet either. My heart got effective I sent all the red bluzzers off they had to wake me up. etc etc. I couldn't talk etc. I guess I am not good at writing...but I am doing better as long as I keep on clear liquids right now...I still have dieahera since before Easter. This isn't something I should write here I know.

But I just wanted to say I will miss you so much....I am tyring to keep the faith.....and I hope you will still be here

thank you for everything

I will miss you so much

Joe, you have really been a calm shoulder to cry on and a great researcher as well. You Provided information to us when we were in a panic. I understand you no longer have a dx of CIDP, but I don’t understand why you have to leave the group. Whether you have ALS, CIDP or XYZ, you are the same man, a man we all count on and treasure. I wish you peace and I hope you will think about staying. In return, we can help you with your struggles as you have helped us. Please don’t go!

God bless you. Thoughts are with you…

Joe I, as a new member, have to say; "That just SUCKS, big time!!!!"

God bless you Joe! And the best to you! Think about a brain stimulator if you can get it! It seems to be helpful to lots of folks.


Sad to hear of your ALS Dx. I was so hoping to have a fellow CIDPer in TN. Lucky for me, at least, my EMG's have shown no signs of ALS. My tests have all pointed to CIDP, albeit a variation and not "pure" CIDP. I wish you all the best and I pray that within your lifetime they find a way or ways to slow down or stop ALS. God Bless.

H Joe, I don't know if you still respond to this forum, but I am scheduled for an emg with Dr. Lee at Vanderbilt in the morning. Needless to say, I am wondering what I will find out. I was scheduled two weeks ago, but I was rearended by a hit and run driver less than one mile from Vanderbilt.The wreck added stress and pain. Oh well, I am trying to take one wonderful day at a time. Blessings, Monica