My son, 18, was diagnosed with Autoimmune Autonomic Neuropathy in September of 2012. He started having symptoms at age 15 (difficulty swallowing). He was sent to specialist after specialist for tests after tests with no answers or help for his symptoms until we finally saw a Neuromuscular Doctor at Children's Los Angeles. To say that my son has challenged this neurologist is an understatement. It took another year, after we got to Children's, to get a diagnosis.
My son was sent to Stanford for Autonomic Testing after he had a week long hospital stay. They did a Tilt Table, Sweat Test, and extensive blood work.
When we left Stanford we knew that our son had tested positive for Autonomic Neuropathy. We then had to wait for the blood work to come back. After about 2-weeks we were informed that our son had tested positive for the AchR antibody meaning he had "Autoimmune Autonomic Neuropathy."
Currently my son has: Difficulty swallowing, erratic heart rate and blood pressure, dizziness, delayed gastric emptying, nausea, headaches, muscle weakness, heat and cold sensitivity, difficulty with his bowls, bladder issues.
He has been on Steroids for over a year, both orally and IV. Steroids seem to help, however they come with other side affects and we have been told that he cannot be on them forever. He is also on another immune suppressant called Cellcept (1500 mg daily). He has to take many vitamins due to deficiencies. Also, GI has him on a medication to help with emptying his stomach.
He started IVIG a week ago. If this doesn't help we have been told that he will need Plasmapharesis.
It is our understanding that the will have this for the rest of his life and that unfortunately there isn't a "cure" and that they just "treat the symptoms." Our experience is that this is a Progressive Disease that needs doctors care. My son rotates doctors every few months (cardio, GI, Neuro, and urology). This will be for the rest of his life. I understand that it can continue to progress and worsen, but doctors don't like to speculate and they say it is case by case. Also, this is extremely rare, especially with young patients, and often the course of treatment is immune suppressant medications, IVIG treatment or Plasmapharesis.
I am sure I am missing something, but feel free to ask questions. If I can answer or help I will.
I hope this helps....
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.
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.
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.
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.
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.