Autonomic Dysfunction

So, I had my first of many Mayo Clinic visits. This was with an internist. He didn't want to speculate on the neurologic aspect, but he did suggest autonomic dysfunction. Has anyone else had this diagnosed along with CIDP? They are repeating my EMG, doing and autonomic reflex test, labs, and I am going to see a Holistic dr for a 2 hour consult there, the neuroimmunologist, and a psychiatrist! That part kind of weirded me out. I am fighter, and I would be circuit training, and working, and being the active mom I am at heart if I could. They are tapering me off my Medrol and I am scared to death. My appointments are the 6th and 13th. I am supposed to return to work the 26th but this has thrown a wrench in it. Do any of you get scapula pain and swelling from things like typing. I am a counselor and we use electronic medical records. I type a lot. I wondered if anyone found a solution to this problem. I am curious if the second EMG will reflect the same demylienation. If it does, I feel like I need a concrete diagnosis and treatment plan, but I know that isn't how it always works...:-(


I have autonomic dysfunction. And yes to shoulder pain, hips would hurt along with the shoulders. My neuro thought a back brace would help. I opted not to use it because I thought it would make it easy for me not to recondition. I practiced good posture and Kundalini Yoga; Maya Fiennes, Chakra/ Mantra fitness programs which are on demand if you x-finity. They help with balance and breathing issues too. I think it is all connected. When one gets fixed the rest will too. I also had slow digestion, I'm guessing from the autonomic dysfunction. I would ask for a nutrition panel to see if your able to absorb. I found that I wasn't and prednisone added to the depletion. As I began fixing the deficiencies my quality of life changed completely. I asked for an intern when I went to Mayo. I didn't want to pigeon hole a diagnosis. Medrol can mask problems which could hinder the diagnosis. If you turn out to have cidp the first line of treatment is ivig which is given because it has the least amount of side effects. Psychologists, psychiatrists are pretty standard recommendations for anyone who goes through this. It's not personal. There's every reason to think you will get better with a diagnosis and treatment. I think you have a good plan.

Even without understanding the medical terminology the graphic tells most of the progressive story of my demylienation, and perhaps yours.

The gold coloring in the chest of the diseased individual: I think that is voluntary breathing problems; the diaphragm muscles having become diminished.

I have autonomic dysfunction; many diseases can cause autonomic dysfunction. Since CIDP is a treatable chronic disease you can only go into remission. There is no cure for CIDP. CIDP attacks nerve roots, so all cases of CIDP are different and strange sensations will affect you.

I was a novelist, typed for 10-12 hours each day, six days a week. Now, simple emails take what seems like hours. CIDP diminished my right hand ulnar nerve and consequently the muscles it activates.

You sculpa pain may be from incorrect posture or not taking breaks from your typing.

CIDP is progressive, so a treatment plan of any kind only works for an unspecified duration.

I recommend not being scared to death of CIDP, the fright is counter productive. Active... three years ago I was surfing big waves, running miles and miles through a beautiful jungle with my dogs and weigh training.

I accepted my chronic disease — reluctantly, and I still fight it — but I am moving on to work within my limitations... poetry, maybe a novella.

Thank you all so much. I didn't even realize the two were related. Looks like I have a good plan!

Yes, I have autonomic dysfunction due to my CIDP: I don't sweat from the waist down, so I sweat A LOT under my arms and in my face. It's a nuisance! There's not much that can be done except for a prescription antiperspirant, removing sweat glands from under my arms, or just putting up with it. My Neuro doesn't think it's a good idea to try to limit the sweating since the body needs to sweat to maintain a normal body temperature....

Before I was diagnosed my thyroid went crazy then my heart then my lungs then my kidneys then after being sent every where my GP said it. It wa almost like each organ was taking its turn flaring up. Lung capacity stabilized at 60 percent. Swallowing became easier. Pain in extremities increased weakness increased. Each week brings something. At least the weeks are still coming. : )

You have all been so helpful..Thank you!

Coincidentally, Mayo Clinic researchers published a report based on 47 patients with CIDP. The good news from this study is that autonomic neuropathy was usually mild. You can access this report via the following link: