[Cathyst]

Hi-
I have been extremely sick for the past four years. At the present time, I am seeing two separate MS specialists.

My symptoms have been progressing since the beginning. Both of my specialists have been leaning toward PPMS, hoping for lesions to show up. I have been tested for everything else. It has been a nightmare.

Over the past few years, I have had two EMG tests and were both negative. Last week I had the first one in two years. This time the result is Autonomic Small Fiber Neuropathy. I have been doing a little - okay, a lot - of research on the web and getting a little - okay a lot - scared.

Has anyone had this same finding in an EMG (actually, I am not sure if it was an EMG or nerve conduction)? Please let me know any and all information you have about this condition.

Thank you all in advance-
Cathy

[Aussie99]

Originally Posted by Cathyst

Hi-
I have been extremely sick for the past four years. At the present time, I am seeing two separate MS specialists.

My symptoms have been progressing since the beginning. Both of my specialists have been leaning toward PPMS, hoping for lesions to show up. I have been tested for everything else. It has been a nightmare.

Over the past few years, I have had two EMG tests and were both negative. Last week I had the first one in two years. This time the result is Autonomic Small Fiber Neuropathy. I have been doing a little - okay, a lot - of research on the web and getting a little - okay a lot - scared.

Has anyone had this same finding in an EMG (actually, I am not sure if it was an EMG or nerve conduction)? Please let me know any and all information you have about this condition.

Thank you all in advance-
Cathy

Hi Cath,

You poor thing

I know it can be very scary. I had an full body small fibre neuopathy that also to some degree affected my autonomic system. Though my small fibre testing came back normal twice, there was clinical evidence to show I had an overactive symapthetic system that would set itself off even when I slept. It felt like it was getting worse the first 2-3 years but now I am in year 4+ and I can say I am much much better.

There is more specific testing done to confirm a diagnosis of autonomic small fibre. I went to a small fibre clinic here in Sydney and had testing such as tilt table,sweat test,breathing and some other tests... I forget. Though they all came back normal I was suffering alot and I had a hard time working and also looking after myself. I realised that even a slight disruption in autonomic function (dysautonomia) can be full on and hard to cope with. I had to take various meds to control some of the symptoms and just bear and grin with others.

I don't know what symtoms you are experiencing and what other testing other than EMG you have had. It would help if you can describe what's going on exactly and what you have tried in the form of meds or therapy to help.
Take good care weary traveler and don't think and feel you are alone.

Cheers,
Aussie

[nide44]

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

[BEGLET]

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....

[glenntaj]

--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?

[cyclelops]

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.

[Cathyst]

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

[RichgotsSFN]

Originally Posted by cyclelops

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.

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.