Autonomic Neuropathy

[Achilles2323]

my doctor said today i was borderline for Autonomic neuropathy

he said it was rite on the border line but he would not worry about it

should i really not worry about this ? or am i looking to far into things ?

[Guest Alex]

Fight,

not sure what test you had to evaluate you for neuropathy (I guess it was either a skin biopsy or QSART - the sweat test) or what your dr may have meant by "borderline" but many of us with dysautonomia may have autonomic neuropathy (damage to the autonomic nerves). The "problem" with the skin biopsy is that if they test the "wrong" spot on your skin it may not even detect it.

This post by Rich explains a lot:

http://forums.dinet.org/index.php?/topic/23039-my-theory-on-what-is-causing-most-dysautonomia-and-why-there-are-wide-ranging-symptoms-autonomic-neuropathy/

It's not something you should "worry about" but maybe consider looking into as it may be one of the key puzzle pieces in your case. A neurologist that is specialized in POTS/dysautonomia should be able to provide you with more answers.

Best,

Alex

[looneymom]

Like Alex, I'm kind of curious which test was borderline. My son's QSART was normal but he experiences pain all day long. If it were me, I would find out the name of the test and start researching to see what other test are done that can be more definitive of the diagnosis. Hopefully you can get your doctor to pursue further testing.

[E Soskis]

Well...once neuropathy starts, there is not much we can do to stop it - worrying about it might actually make it worse as chronic stress, anxiety, and worry cause the release of substances that increase inflammation throughout the body thereby increasing symptoms. I think that the more information we are able to obtain about our disease, the better we understand where our symptoms are coming from - this reduces anxiety and helps us to keep on keeping on!

[andybonse]

Well...once neuropathy starts, there is not much we can do to stop it - worrying about it might actually make it worse as chronic stress, anxiety, and worry cause the release of substances that increase inflammation throughout the body thereby increasing symptoms. I think that the more information we are able to obtain about our disease, the better we understand where our symptoms are coming from - this reduces anxiety and helps us to keep on keeping on!

I guess it depends on the cause, if treatable causes are found it could be stopped and reversed. Obviously thats the best case scenario and doesn't come a long every day!

[arizona girl]

FYI, small fiber nerves can regenerate if the antigen that is harming them can be stopped. It takes six months to a year according to my neuro. In my experience I would see I've seen improvements, but if I withdraw treatment my body goes back to attacking itself.

Gold standard testing for small fiber neuropathy which includes the autonomic nerves is the skin biopsy doing all three skin biopsy qsart and qst give you the best chance of catching it as it can be patchy.

Hey Looney. I'm in more pain when I have an infection brewing. With his immune issues he may have a low grade infection somewhere. Mine are are hard to pin point probaby gi. I usually feel hot in parts of my body. I also usually have a very low grade fever when this happens. Like 99 to 99.6. It happened this week as I'd delayed my infusions the last two months because of travel = wedding.

[issie]

My neuropathy is reversing. I can now feel the little bumps in my Crocs. (Yes, I know they are ugly - but they sure are comfortable around the house. But, it can come and go. A lot depends on if I'm having edema or not. And external compression makes it get worse. But, if I'm pooling badly in my legs and feet - it's worth the compression.

Working on autoimmune things is probably what is helping.

Issie