Autoantibodies against neuronal antigens (weak positive?)

[pibee]

It's often the case that SFN occurs with just affecting sensory fibers causing peripheral neuropathy pain and without affecting autonomic fibers so there's no other symptoms of autonomic dysfunction with it (autonomic nerve damage affects the axons in small-fiber neuropathies, common symptoms include excess or lack of sweating, heat intolerance, inability to expand and contract the small blood vessels that regulate blood pressure, and gastrointestinal symptoms).

Confusion can arise because the terms SFN or Autonomic Neuropathy are often widely used interchangeably regardless of whether or not there is this extra autonomic dysfunction too.

An abnormal Tilt Table Test result alone doesn't diagnose Autonomic Neuropathy but I think it does if QSART is abnormal too. Much of the literature suggests you need the panel of tests I mentioned above though to achieve the highest diagnostic accuracy. QST I believe is another sensory test

thanks. now i remember i read this about QSART.
I noticed I dont sweat much but in fact when they measured all lines on the graph were very high, I didn't get the result yet, I might have irregular sweat pattern (patchy), but according to the graph I didn't sweat too little...

i guess POTS can happen just from autoantibodies + sensory neuropathy, no need for autonomic... as you say.

I actually don't have gastrointestinal issues (not that i know of.. a bit of constipation but nothing even to think about), sweat is impaired, blood pressure is sky highy (supine hypertension especially). This can also be from all those autoantibodies.

will be interesting to see QSART. i dont think TST is available here.

 

[kangaSue]

I noticed I dont sweat much but in fact when they measured all lines on the graph were very high, I didn't get the result yet, I might have irregular sweat pattern (patchy), but according to the graph I didn't sweat too little...

You can have variable sweating with sudomotor dysfunction. I don't sweat out in the sun but I can have soaking night sweats just around the chest and neck area on occasion.

i guess POTS can happen just from autoantibodies + sensory neuropathy, no need for autonomic... as you say.

Not sure what the actual statistics are but I believe a high percentage of those with POTS also test positive for Autonomic Neuropathy. Mestinon is a common med to try for this (AN) and there are a few cases where this med has significantly improved on symptoms of ME/CFS too.

 

[pibee]

Yeah, I know about Mestinon, but it seems the response is low in ME and even in POTS.

Btw I was surprised to read recently that only 11-13% ME patients have POTS. (which is approx same or even less as it's in MS ) but over 50% of POTS patients qualify for ME/CFS diagnosis......
if you look at PhoenixRising it seems like much more ME patients have POTS. A bit confusing because I'd expect most people on PR are well read on the topic and wouldn't confuse their POTS w ME(would be aware they have only POTS).
I am among confused part, but I have likely PANDAS so this can mimic ME. or I simply have both.

 

[Gingergrrl]

Thank you @kangaSue and @pibee and all of this info is really helpful.

An abnormal Tilt Table Test result alone doesn't diagnose Autonomic Neuropathy but I think it does if QSART is abnormal too.

That is so interesting and I had both an abnormal TTT and an abnormal QSART in early 2016 which means that I must have had a diagnosis of Autonomic Neuropathy except the Neuro never told me

QST I believe is another sensory test

I did not have a "QST" test but did have the "QSART". Are they similar?

Where the autonomic tests are concerned, that would be diagnosed as Autonomic Neuropathy as I understand it.

I wish I had known that back in 2016 although I do not know if having another diagnosis ("Autonomic Neuropathy") would have changed anything in my treatment plan. I am going to ask my doctor in the future out of curiousity.

I noticed I dont sweat much

I did not sweat at all for many years but now I am able to sweat normally when I do pilates (as part of my physical therapy).

i guess POTS can happen just from autoantibodies + sensory neuropathy, no need for autonomic... as you say.

I am confused about this as well and I was diagnosed with "Autoimmune POTS" but I also clearly had autonomic dysfunction w/the failed TTT and QSART so I must have had both kinds of POTS.

Not sure what the actual statistics are but I believe a high percentage of those with POTS also test positive for Autonomic Neuropathy.

That makes sense and I now assume this is where I fit (in both categories).

Mestinon is a common med to try for this (AN) and there are a few cases where this med has significantly improved on symptoms of ME/CFS too.

I tried Mestinon at the end of 2014 (for POTS) but did not tolerate even 1/8 of a pill. Atenolol and Midodrine have consistently been the best meds for me for POTS (prior to IVIG and Rituximab which got more to the root cause vs. just partial symptom relief from the POTS meds).

 

[kangaSue]

I did not have a "QST" test but did have the "QSART". Are they similar?

No, completely different. QST is a test of pain perception, not sweat abnormalities. I haven't had a QST test done either.

I wish I had known that back in 2016 although I do not know if having another diagnosis ("Autonomic Neuropathy") would have changed anything in my treatment plan. I am going to ask my doctor in the future out of curiousity.

I don't think a diagnosis of Autonomic Neuropathy would have changed your treatment plan. There's little they can do for AN symptomwise other than trying Mestinon (or something similar) or any of the neuropathic pain meds (gabapentin, pregabalin). Low dose antidepressants can be effective for neuropathic pain sometimes too.

I tried Mestinon at the end of 2014 (for POTS) but did not tolerate even 1/8 of a pill.

Mestinon helped me with an improved sweat response but I was hoping that it also helped with GI motility, but it didn't. Had to stop it because of increasing abdominal pain after about 1 month but that's typical of most meds for me. One of those unexplained little mysteries as to why that occurs, not that any doctor is interested either!

 

[Gingergrrl]

No, completely different. QST is a test of pain perception, not sweat abnormalities. I haven't had a QST test done either.

Thx for explaining and if the QST is a test of pain perception than I definitely did not have that one.

I don't think a diagnosis of Autonomic Neuropathy would have changed your treatment plan. There's little they can do for AN symptomwise other than trying Mestinon (or something similar) or any of the neuropathic pain meds (gabapentin, pregabalin). Low dose antidepressants can be effective for neuropathic pain sometimes too.

That was my guess (that it would not have changed my treatment plan). I didn't tolerate Mestinon and I don't actually have neuropathic pain (although I've had a pinched nerve in my neck before and was diagnosed with cervical radiculopathy but this is unrelated). I can't take stuff like gabapentin that blocks the calcium channel and would not take an AD.

Mestinon helped me... Had to stop it because of increasing abdominal pain after about 1 month but that's typical of most meds for me. One of those unexplained little mysteries as to why that occurs, not that any doctor is interested either!