Autoimmune Autonomic Neuropathy

I was diagnosed at Vanderbilt with severe autonomic failure last June.  I recovered somewhat and a further workup at Mayo yielded a diagnosis of autoimmune autonomic neuropathy. I pass out 2X month, am extremely fatigued, have delayed gastric emptying, cognitive changes, and heat intolerance. I forced myself to go back to work and start exercising to increase the muscle tone in my legs. I have not been able to figure out what the long term prognosis is.  What can I expect over time?  I am highly motivated if you have additional suggestions to improve functional staus.

[Dr. A. Srivastava]

Hi, Thank you for your question. There are several types of neuropathy, but without being able to examine you in details I can not provide a precise diagnosis. Most common form is a peripheral neuropathy and occurred by deterioration in the nerve function at the limbs. It represents with symptoms of loss of sensation (or pins and needles like) in the arms, hands, legs and feet. Since there are many causes of neuropathy, hence treatment involves seeking these conditions out and correcting any underlying problem such as poor sugar control in diabetes in order to get a relief in your symptoms. Unfortunately, there is no permanent cure of neuropathy but symptomatic relief can be provided. Hope this helps.

[Audrey5512]

I have mild peripheral neuropathy, but that is not the issue-- autonomic neuropathy is the problem.  I do not have diabetes. I do have other autoimmune issues (Hashimoto's and hx of hypocomplementic vasculitis which is resolved).  My symptoms include dizziness with syncopal episodes 2X month, severe headaches, delayed gastric empyting, severe fatigue, nausea, very high and very low blood pressure, heat intolerance, and intermittent cognitive problems. These symptoms significantly interfere with my quality of life and ability to work. I am looking for answers on whether the sympptoms will slowly get better or worse over time.

[lyn40]

Regarding your delayed gastric emypting. My husband has this along with postural hypotension which is what causes the syncopal attacks. Also no tears or saliva.

The headaches are what they call 'coat hanger' headaches along the shoulders and up into the head.

We are in Northern Ireland and The only help we could get was from the Sarah Mattison Trust in London. They know all the symptons and are very helpful. Their Patron is Prof Chris Mathias London Neurology Hospital.

After a long time living on a liquid/puried diet my husband has somewhat improved.

Lyn40

[tkimber]

I just read your symptoms and I have the same thing and same symptoms.  Went to Mayo in Phoenix and was diagnosed there.  They call it mild autonomic neuropathy, why? I don't know, because it has ruined my life.  Anyhow, I was a very healthy active 42 year old female and 4 years ago I developed valley fever.  It's an infection that is caught by fungal spores in the air in Cali, Nevada, NMexico and Texas.  I was having mild issues with the autonomic neuropathy but after the infection it is just out of control.  I have not been able to work or do much of anything, but some of that is also from the Valley Fever.  It ate a hole in my lung the first two years and now they think it's in my spine, but I think it's just the autonomic neuropathy.  They said AN doesn't cause headaches or pain.  I also have the crisis, which is so rare, that goes with the AN in mostly famialial, but I was told it can also occur in idiopathic dysautonomia...but I've had this crisis situation for over 20 years.   I don't have diabetes or the other typical conditions that cause this, so we are still looking for the culprit.  Did your doc tell you headaches and pain are part of AN?  Hope to hear from you soon.   I am hoping that you are having a healthy day.  

[mmmcat]

I also have been diagnosed with Autoimmune Autonomic Neuropathy. Mine is severe with a CASS score of 10 (severe). All body systems are impacted, especially my BP and heart rate. I do not have diabetes. I also tested positive for the AchR antibody, which is "very, very rare. My Neuro had given the test 50 times to others and I am the only one he has seen come back positive. (Also note that the AchR antibody is responsible for Myesthena Gravis.)

My neurologist ordered me to work out 5-7 days a week. This will save my life; or at least extend it for who knows how long.  Each case is different. Exercise is CRUCIAL!!

I am also getting IVIG. This is common therapy and helps (so far [2 treatments].) I am headed to Mayo to see how other AchR antibody seropositive people have reacted to treatment.

Let me know if I can help in any way. This is new to me too, so I have lots of questions too for those who have tested positive.