Autonomic Nervous System Testing

[jjb]

I have had some testing done in the past, but never a full work up. NIH thought both me & my daughter has dys.

My daughter & I aut function testing w/ Dr Peter Novak in March.

I am familiar w/ the ttt and some of the other tests, but was surprised to here biopsy was part of it.

Is the biopsy to look for the mast cell issue I keep reading about here?

Years ago I had a bladder biopsy. It showed chronic inflammation & increased mast cells. Is this relevant to the dysautonomia?

I do have a dx of interstitial cystitis, but when I mentioned it to Dr Novak, he seemed to indicate there may not be such a condition. The inflammation & so forth is very real of course ... but he seemed to imply it was something else.

I have always had all sorts of inflammation, many in my family do. I have always thought all of my health issues are related ... it'd be great to actually find out this is so ... and why it is so.

[ajw4790]

Hi,

Did they say what kind of biopsy? It could be one of many, so I am not sure... nerve, skin?

[jjb]

Hi,

Did they say what kind of biopsy? It could be one of many, so I am not sure... nerve, skin?

Skin of the abdomen. They look for inflammation I think. I think it is standard in their lab (uMass).

I am wondering if it has to do w/ the Mast cell issues some here seem to have.

[jjb]

Ok, guess I should have gone back to their site and read their info a bit closer.

Here is the reason they do the skin biopsy:

The Value of Skin Biopsy Testing

In addition, the UMass Memorial Autonomic Function Testing Laboratory offers skin biopsy testing to detect small-fiber neuropathy. Dr. Qin explained why this testing is very important:

"Because one of my practice areas is neuromuscular diseases, I see a lot of patients with neuropathy," she said. "Conventional electromyography usually can detect large-fiber neuropathy, so an EMG study for patients with small-fiber neuropathy could be normal, especially in the early stages.

"It is important to detect small-fiber neuropathy early because studies show that it could be the first sign of diabetes," she continued. In fact, one study showed that in 40 percent of patients with small-fiber neuropathy diagnosed only after skin biopsy, oral glucose tolerance testing revealed a previously undetected impaired glucose tolerance.

"Early detection of small-fiber neuropathy leads to early screening for diabetes or glucose intolerance, and early lifestyle or pharmacological interventions," she added.

In addition, skin biopsy testing demonstrates small-fiber neuropathy in restless legs syndrome and erythromelalgia. Plus, in systemic diseases, such as lupus, sarcoidosis, Sj?gren's syndrome, celiac disease and hypothyroidism, skin biopsy testing has enabled correlations between neuropathic symptoms and small-fiber degeneration.

[momofsara]

Hi there--I cant offer anything on the biopsy, but I do know that Sara has interstitial cystitis also. This was diagnosed by a very prominent urologist. He did a specific test which only tests for that condition and hers was overwhelmingly positive. He did say it was unusual to find it in someone as young as she( 28 ). However, she was also diagnosed with the same thing at around 10 years old. She has been suffering with bladder problems since she was very small. Good luck with your testing and keep us posted on your progress.... Susan

[jjb]

Hi there--I cant offer anything on the biopsy, but I do know that Sara has interstitial cystitis also. This was diagnosed by a very prominent urologist.

I was first Dxed w/ IC when I was 21. The urologist said it'd get worse as I got older. I have learned to control it w/o meds by avoiding known triggers ... and I have many.

The worse is sugar, but sugar tends to cause inflammation in other areas too.

The test I had for te IC was a cyctoscopy w/ biopsy & hydrodistension. My results also showed obvious IC (the bloodyness petechia & chronic inflammation)

The hydrodistension itself was the most effective treatment I had ever had for it. Has Sara tried this as a form of treatment?

Anyway, I found it interesting that this new aut neuro says there may not be such a thing as IC and that it may just be part of something else. Does Sara have any other health issues?

[jjb]

oops, I see Sara has many other health issues.

For the chiari, did treatment help w/ any of her symptoms esp seizures?

I also question if it may be an issue w/ Ava. My brother has chiari & epilepsy. NIH believes I have it ... I also have small seizures every now and again (though I consider them to not have all that much significance).

[dsdmom]

I am having a biopsy w/ Dr Novak next week. I was under the impression he was taking it from my leg. But I could be totally wrong. I'll let you know what happens.

[jjb]

I am having a biopsy w/ Dr Novak next week.

Have you done any other testing w/ Novak yet?

I think he wants to put an EEG on Ava and try and induce an episode ... but I don't see how he'd be able to.

He also wants to try and induce sweating w/ her as one of her issues is extreme heat intolerance and am pretty sure she does not sweat in her face.

Unfortunately he said it is difficult to induce sweating in a small child but is looking for some of the older methods ... meds I have never heard of.

[momofsara]

oops, I see Sara has many other health issues.

For the chiari, did treatment help w/ any of her symptoms esp seizures?

I also question if it may be an issue w/ Ava. My brother has chiari & epilepsy. NIH believes I have it ... I also have small seizures every now and again (though I consider them to not have all that much significance).

Sara takes Ditropan XL for the spasms of her bladder and tried Elmiron for a while, but the side effects were more than she could tolerate. She tries to avoid triggers, however stress seems to be one of the worst ones, which is unavoidable sometimes. As to the Chiari surgery, we dont know if we would have the surgery again. Its questionable whether or not it helped. We do know that her pain level is MUCH worse and she now has dementia because we found out later that the surgeon went deeper than necessary into the brain area and caused some damage which is irreversible. But at the time, we were told that she would be paralyzed by the time she was 30. So, you just make the best decision you can. I would definitely advise getting a second opinion before having the surgery however. She didnt have the mini seizures before the surgery either. So we are not big fans of the procedure. I'm not saying that no one will benefit, just that her outcome was not what we hoped for. Hope all this rambling helps some.... Best to you

Susan

[dsdmom]

I have had other testing - pretty standard stuff. TTT, Vasalvar, QSART - which is a sweat test of sorts, but really not inducing sweating - at least it does not sound like what he was thinking of doing for your daughter. Does he normally treat children? I did not know that....

[jjb]

Hope all this rambling helps some.... Best to you

Susan

risk

I wouldn't have the surgery either, I am just curious. In general EDSers are at greater risks w/ any surgery, but I have also been told the surgery does not always help EDS folks. It makes sense to me that it wouldn't.

When I do hear of other folks having it ... I typically tell them I'd only go to see the folks w/ the Chiari Institute.

I am so sorry to hear Sara has so many issues.

[jjb]

Does he normally treat children? I did not know that....

I don't know if e normally does, but said he'd treat Ava. He has said he has treated children in the past.

In fact he talked about treating children w/ dysautonomia, epilepsy & disability.

Can you tell me more about the sweat test?

[dsdmom]

The sweat test I had was called QSART - here's a link to a description:

http://millercenter.uchicago.edu/learnabou...mic/qsart.shtml

One note though is this website says the test will take 2-3 hours to complete. More like 15 minutes I think at the most!! Seriously, not sure where they got that timeframe from.

[dsdmom]

Just wanted to add my update, as promised. Had my biopsy on Friday - actually from 2 places on my left leg. They are small incisions - about 3 mm - but I was instructed not to get them wet for 3 days. So they have been bandaged up since Friday and I wrapped my leg in saran wrap to shower. It did not hurt at the time - they numbed the area first. But one of the spots is now pretty painful - doesn't look infected though, so I'm hoping it will get better soon. The biopsy is to look at the nerves in this area to see the extent of the damage...results will take up to a month to get back. They sent the biopsies somewhere in New York. He also drew blood for the AChR antibody test - told me that will take 1-4 months to get back.

HOpe this info helps!

[jjb]

Did you do the sweat test?

Does anyone know how they do one on children?

This is one of my bigger concerns w/ Ava.

We were at the Childrens museum this weekend (a very cold day) but she was overheating while inside. Her face does not sweat. She gets very flushed an hot to the touch. I want to be sure they are able to test her accurately when we got down in March.

[dsdmom]

The 'sweat test' I had was the QSART - I think I posted on this before. This will describe it:

http://www.mc.vanderbilt.edu/root/vumc.php...cs&doc=8004

I would assume this is what he will use for your daughter. When is your appt?

[jjb]

The 'sweat test' I had was the QSART - I think I posted on this before. This will describe it:

http://www.mc.vanderbilt.edu/root/vumc.php...cs&doc=8004

I would assume this is what he will use for your daughter. When is your appt?

I assume this is what he will do w/ me but says he has trouble doing the sweat tests on young children. Ava is four. He was talking about using some drugs that are no longer used to try and induce sweating. He also talked of using nicotine, though I was not sure if he was serious or not.