Maybe Glenntaj will chime in.
He knows a lot about this type of thing.
Or you could PM him.

Cathy, are you exhibiting many of the symtoms of automic neruopathy? It can vary widely in the systems that is does effect, and also the severity.....

Essentially, it is caused by damage to the nerves that you cant control but you need to survive - heart rate, blood pressure, digestion, perspiration, etc. and can range from very mild end results such as some dizziness which you can adjust to (the result of an improper drop in blood pressure - your body doesnt adjust to "altitude" changes), to cardiac issues, gi issues resulting in gastroparesis (paralyzed stomach and intestines so your food does not digest), heat intolerance, UTI problems, etc..... essentially your autonomic nervous system is not correctly comunicating with your brain.

I have both small and large fiber neruopathy - and the autonomic portion is severe... usually and as in my case - the symtoms are managed by spcialists who treat the organs affected.... a cardiologist if your heart is misbehaving, a gastroenterologist to help to be able to continue to eat, urologists, etc... meds help some symtoms, change of diet, change of exercise habits, etc.... its important to find specilaists who understand that neruopathy is the underlying cause of any organs needing special attention and who hepefully work closely with your neurologist (who will diagnsos you but doesnt do the hands on treatments for most of the end results here)

Hoping you can get accurate assessment of what you may be dealing with - and proper treatments..... Just hang in there....

--would be diagnosed through standard nerve conduction/EMG testing, as the small, unmyelinated fibres that control autonomic functioning cannot normally be reached with such testing (which only can contact larger, myelinated nerves).

Usually, tests for autonomic functioning are those mentioned by Aussie99, which are more indirect.

And, of course, the MS posssibility needs to be explored--any dysfunction of the central nervous system (brain/spinal cord) can produce similar symptoms of autonomic dysfunction (as well as many others).

Have you had a lumbar puncture, or evoked potential testing (indriect ways to check for central nervous system disorders in absence of obvious central nervous system lesioning)?

And, have you been checked for B12 and other nutrient malabsorption?

People with MS can have dysautonomia. You may get some info by googling this. Autonomic problems come with many of the neuro diseases.

Some university medical centers are setting up autonomic testing centers. Most bigger university hospitals or well known hospitals have these centers. I was fortunate to get to one and get all the direct autonomic tests, tilt table, sweat test (thermoregulatory), Qsarts, R to R breathing, valsalva etc. All my EMGs and Evoked Potentials were normal, most of my autonomic tests were off.

My testing took place in 2004, and I have been in the process of diagnosis for many years, and now my ANA has gotten very high, the first solid sign of autoimmune issues besides the positive biopsies I had, however, my doc diagnosed autoimmune autonomic neuropathy back in 2004 and I was and am treated with IVIG. (There was a lapse of IVIG but back on now).

It will take time to get the diagnosis solidly down. Dysautonomia is more likely the issue than actual autonomic neuropathy. Hang in.

AN can vary greatly. I know one blogger has a rather dramatic, 'it's terminal' in her accounts. That scared me too....I am still here. There are some good sites for autonomic dysfunction, which is the larger term.

If you are feeling ok, not passing out, throwing up, having a very low pulse or BP etc. you may have some dysautonomia rather than autonomic neuropathy in its worst form. This can range from mild to severe and there are ways to manage the problems.

Thank you all so much for your replies. I am seeing my MS specialist this Thursday to go over my results. I will post after the appt, along with my list of God awful symptoms.

Cathy

I think you are a little confused about dysautonomia and autonomic neuropathy. I have had POTS, IST and orthostatic hypotension since 2006. Only recently did I have a positive SFN skin biopsy.

People with autonomic neuropathy all have dysautonomia. But not everyone with dysautonomia has small fiber neuropathy, but I do believe over time we will see that the % is very high of those who have dysautonomia from autonomic neuropathy. Also not every one with small fiber neuropathy develops autonomic neuropathy in a noticeable way. But if someone knows they have SFN and they start to get dysautonomia like symptoms you mention then its from the SFN unless its medication induced.