← Return to End stage autonomic polyneuropathy

Discussion
cheyne avatar

End stage autonomic polyneuropathy

Autoimmune Diseases | Last Active: 9 hours ago | Replies (6)

Comment receiving replies
Profile picture for fairn @fairn

I can briefly share what is tracking for me and what I've been told. I've been diagnosed with Sjogren's, polyarthritis and Undifferentiated Connective Tissue disease. I was started on hydroxychloroquine last year. Prior to beginning medicine I started losing weight. Because I was trying to eat healthier with less inflammation I at first attributed it to that. I was slightly underweight to begin with so this was unintentional. As the past year has gone on the weight loss has become dramatic and last January my primary care doctor referred me to a gastroenterologist and also ordered his own tests. I had an endoscopy (which showed mild gastritis) which was consistent with autoimmune disease. There was no real follow-up for a few months but the weight loss continued. I had a barium swallow which came back normal and finally a liquid gastric emptying test which revealed delayed emptying almost three times the normal length of time. This was also followed by a colonoscopy that was normal with the exception of a small polyp. Since then my rheumatologist who is really sharp did small nerve fiber biopsies on my leg which showed SNF damage. I've had edema in my lower legs and other nerve symptoms. I also have had other autonomic dysfunction symptoms for a long time. According to my rheumatologist and information that I've read, this is an area that is particularly impacted but certain autoimmune diseases like Sjogren's. I am currently being treated for the gastroparesis and other SNF related complications. My rheumatologist is trying to go after the neurological source of these by starting me on mycophenolate; the goal is to have me approved for IVIG but I have to start with this med before insurance will agree. The doctor said it's very difficult to find a medication to slow down the attack on the nervous system that doesn't have side effects, but believes that until we do, food replacement is only a stopgap. I am 5'6" and have gone from 127lbs to 96lbs in 11 months. I realize that being diabetic is a different metabolic problem, but wondered what medications are being used to directly slow down the damage being done to your nerves? Has anyone discussed an IVIG medication track?

Jump to this post


Replies to "I can briefly share what is tracking for me and what I've been told. I've been..."

@fairn
Hi,
In a word, nothing. I'm trying to find a middle road to how much I can eat before the glucose spikes, or how little I can eat to stop the pancreas unloading raising the glucose. Unsuccessfully so far. The major concern is the lack of nutrients I get as this speeds up the demeylination of the nerves, accelerating my decline. What the specialist don't yet understand is that no amount of medication will help the autonomic polyneuropathy. When the meylin which is the sensing part of the nerve tips is destroyed nothing will fix the problem and you can't make the part work when it is effectively dead. Hence no feed back to the brain in either direction. The latest research I read was that a chemical has been found that rebuilds the meylin on nerves. But as it is still being trialed and modified on rats, it will not come to the markets until after I'm gone. But there is hope for MS and dysautonomia patients ahead.
Cheers