Qsart Testing

[stacdliw]

I am having the test at Vandy on Thursday. In a way, I think the test in unnecessary because I know that I'm not sweating properly. This summer has been one of the hottest here in Ky. and not once have I sweated when I've been outside. About a month ago when I got into an extremely hot car, my daughter noticed that I wasn't sweating while she was sweating a lot.

So, I really don't know why I'm undergoing this expensive test when I already know what the results will be. Does anyone else know why AN patients are subjected to this test?

[arizona girl]

Yes, they are looking for small fiber autonomic dysfunction. It will document if you have it, just saying I don't sweat isn't proof you don't. It can catch signs of autonomic dysfunction earlier. A skin biopsy is the gold standard and 100% diagnositic if you've progressed to that stage. I believe it is pretty painless, good tool and more comfortable then doing the sweat test. It is worth doing. Skin biopsy in addition is best you can do. If you have a small fiber neuropathy, the cause needs to be determined. Cause will determine best way to treat. If it is autoimmune there are different ways to treat it, then just treating symptoms.

I am having the test at Vandy on Thursday. In a way, I think the test in unnecessary because I know that I'm not sweating properly. This summer has been one of the hottest here in Ky. and not once have I sweated when I've been outside. About a month ago when I got into an extremely hot car, my daughter noticed that I wasn't sweating while she was sweating a lot.

So, I really don't know why I'm undergoing this expensive test when I already know what the results will be. Does anyone else know why AN patients are subjected to this test?

[nunntrio]

I have had a QSART and it is really not that bad, it only took about 20 minutes and there was only mild discomfort involved. I would not worry about it from that prospective. I do not remember it being to expensive, I can not remember the exact cost. My was covered by insurance covered mine with no problem. I agree with Arizona girl that if you can get the small fiber neuropathy documented it is well worth it.

[Tara Lynn]

I had the same test done. Mine showed > 80% involvement (distal postganglionic involvement). Im not sure why they do the test .... They certainly didnt do anything about it and they arent treating me for it. I guess they do it to document that there is some type of neuropathy involved that might be causing the vascular issues or their inability to work properly (constrict - blood pooling) ?? Hopefully - someone can shead some light on this issue and what it all means

[Christy_D]

My son had the thermo regulartory sweat test done. He was diagnosed with small fiber neuropathy from this test. I asked the doctor the signifigance of the test, he said it added to the diagnosis, gave more evidence to the dysautonomia. My son is also not being treated for it. It was for further diagnosis only is what I understood.

I am glad we had the test done. My son did not sweat anywhere on his stomach/admonial area or upper left arm. By seeing where he didn't sweat, it explained why he was cramping up when he was playing sports(can no longer play anything unfortunately) and why he hates any heat, including sunlight, on his stomach.

The thermoregulartory sweat test was uncomfortable temperature wise, but he didn't complain too much about it.

[TXPOTS]

I had a Qsart sweat test this am. I was hooked up to 4 electrodes on my foot and leg, and an acetylcholine solution was added to each electrode. Then a current was placed through the electrodes, which felt like ant bites, but very gentle ant bites for 5 minutes. I stopped feeling the current after 5 minutes, and the test proceeded another 5 minutes. It was the easier POTS related test to date. Don't sweat it. . My test came out normal. You probably already know what is involved, but I wanted to share since I was stressed about the test.

[stacdliw]

Thanks for the replies. I did further research and found as Arizona Girl stated that it was to diagnose small fiber neuropathy. I guess the test is good to have , but if it doesn't help with a treatment, I still doubt it's necessity.

[arizona girl]

That's not true, it does help with treatment course. If a cardiologist tested for it, he/she will treat it differently then if a neurologist tested for it. Cardio's try to treat symptoms and neurologists who treat neuropathy and autoimmune causes will try to treat cause first, then symptoms. The treatments are vastly different depending on cause. Like pots itself there are many conditions that cause SFN. Like in hansel and gretal it's like following the bread crumbs through the forest, one crumb leads to the next. If you have SFN it is very likely that denervenation of the nerves in the blood vessels is causing the lack of constriction and causing the blood to pool thus causing the pots symptoms. If SFN is found then the possible causes should be ruled out or in, treatment will follow depending on what is found. It's unfortunate that sometimes the findings aren't pursued to their conclusion. We can't wait on the doctors to figure it out for us. Oh, and Qsart alone does not rule out SFN. Mine was found by skin biopsy.

Please read on dinets home page the mechansim and causes section. It really educated me on what tests to have done. I tested for eds, anemia's, autoimmune diseases, different types of neurological conditions, etc., I posted a while back all the tests my neuro did. In the end, SFN was found with hyperandregic response, my catecholamines jump on standing, so my BP/HR go up. I was swinging high to low every time I changed posture. Also,during treatment a low iron, low igg and igm immunoglobulin anemia was found. I now qualify for IVIG. As my SFN is autoimmune caused.

Believe me a positive test can change the direction of your diagnosis and treatment. Like many of us here on the board, I don't look sick and mostly don't act sick. I try to be up beat and not act sick, when it came to doctors diagnosising me, that attitude didn't help me much. My positive TTT not only made me credible it opened doors and lead me to doctors I didn't know existed. I know the testing gets tedious and expensive, but when they finally do the right tests and figure out what is wrong, it is so worth it.

[stacdliw]

Arizona Girl your explanation as to the need of the QSART is more explicit than anything that I have read on the internet!! Thanks for the detailed explanation! Now I understand the need for the test and I'm hoping that it does lead to a better treatment plan for my condition. I have some weird symptoms, such as hypersomnia and extreme shortness of breath, so many these tests which I think are unnecessary actually may be the key a better treatment plan. I really appreciate your insight.

[nmorgen]

Hi,

I had the QSART done at MAYO and they said that I had small nerve neuropathy, but they didn't give any suggestions for treatment. I do have to say that I was suppose to see the dysautonmic specialist, but then moved out of the country. I get these weird electic pulses through my body and sometimes a burning sensation. Do you think this could be from that? Should I take my MAYO records to a doc over here and look at getting treatment for it?

As far as the test itself, it wasn't that bad, but it felt like I was being burned the whole time.

[Tara Lynn]

Arizona -

I really appreciate all your input. Since I had significant SFN, what type of treatment should I suggest that they try. Currently - they only have me on the betablocker and florinef for the POTS.

Thanks for all your help.

[juliegee]

All of this has raised questions for me. My son & I sweat excessively . Could we still have this problem? In other words, could there still be patches on our skin that don't sweat? If so, why is this significant? How is treatment altered?

Thanks-

Julie

[arizona girl]

Hi everyone, sorry I wasn't up to being on the forum this week. I can't answer some of your questions because I don't know enough about your symptoms and or tests and treatments you have already had done. What I can tell you is that like a Pots diagnosis, SFN is not the end point, it is is one of the possible causes of pots symptoms, but like pots there can be many causes that bring on SFN. Autoimmune diseases, heredity, toxcity, and conditions like diabetes can cause SFN. Many doctors will stop once they know it's SFN and try to treat symptoms, like the pots ones. However some causes of SFN are serious and progressive, so for peace of mind they should be ruled out.

A neurologist or immunologist who knows how to treat autoimmune causes is the type of doctor to see. In my case it appears to be autoimmune, I also have low to no IGG and IGM immunogloblins and low iron. This is called hypogammaglobulinemia or Chronic Variable Immune Defeciency (cvid). I also have excessive catechcolamine response to posture. Tests that showed the autonomic and immune dysfunction for me were: TTT, catecholamine/STD/SIT, Quantitative immunogloblins, iron, ferritin, and skin biopsy. Many other autoimmune diseases and cancers were tested and ruled out including our Erika's Stiff Person Syndrome. My treatment with plasmapheresis did indeed normalize my HR/BP, reduced pain levels, and some other autonomic improvements. During these treatments perhaps because they were monitoring my blood more closely or the introduction of Cellcept an immune reducing drug, anemia was found, further testing showed no immunogloblins. My insurance will now allow me to treat with IVIG to go at the autoimmune low immuno cause. So if you have an autoimmune or immuno cause, treatment protochols may allow you to treat with plasmapheresis and/or IVIG and a number of other medications, but it depends on what you narrow it down to. Sounds like the neuro at Mayo in Jacksonville gets it, as well as my neuro here in arizona.

I start IVIG treatment tomorrow, wish me luck. I did also find the following info on SFN, and Yes Macksmom autonomic dysfunction does include hyper as well as hypo sweating. Hope this helps!

SFN- Table 3.1 Symptoms suggestive of small fiber neuropathy

Sensory symptoms - Pain*

- Paraesthesias

- Sheet intolerance

- Restless legs syndrome**

Symptoms of autonomic dysfunction

- Hypo- or hyperhidrosis

- Diarrhoea or constipation

- Urinary incontinence or -retention

- Gastroparesis

- Sicca syndrome (dry eyes, etc.)

- Blurry vision

- Facial flushes

- Orthostatic intolerance

- Sexual dysfunction

* Pain in small fiber neuropathy is often burning, tingling, shooting, or prickling in character.

** Restless legs syndrome is a disorder characterized by disagreeable leg sensations that usually occur prior to sleep onset and that cause an almost irresistible urge to move.

Sensory symptoms in SFN typically consist of ?positive? sensory symptoms, including pain and paraesthesias. 1-9 The pain is often of a burning, prickling, or shooting character. It may be worse at night and may interfere with sleep. Allodynia and cramps may also occur. These cramps usually affect calf muscles, and may mislead clinicians to think of other diagnosis if they are not aware of this feature. Some patients present with late-onset restless legs syndrome (RLS).10 Especially in RLS patients without a positive family history, SFN should be evaluated. However, not all patients with SFN suffer from pain. Patients may also have ?negative? sensory symptoms, including numbness, tightness and coldness. Sensory symptoms are usually distal and ?length-dependent?11, but they may sometimes be patchy or asymmetrical.7,12,13 The latter may indicate that a pathological process takes place in the dorsal ganglion rather than a typical length-dependent neuropathy.

Because autonomic functions are also mediated by small myelinated and unmyelinated fibers, symptoms of autonomic dysfunction may also occur.9 These may involve increased or decreased sweating, facial flushing, skin discoloration, sicca syndrome, sexual dysfunction, diarrhoea or constipation. Symptoms of orthostatic hypotension seem to be uncommon except in disorders such as amyloidosis and diabetes.7 Occasionally, excessive localised sweating (e.g., face and chest) is associated with generalised hypohidrosis or anhidrosis, but it is only the excessive sweating that the patient is aware of. The degree and distribution of autonomic impairment in patients with painful feet have been evaluated in a prospective study by Novak et al.14 A preferential impairment was seen of cholinergic and skin vasomotor fibers, sparing systemic adrenergic fibers. It is important to remember that symptoms of autonomic dysfunction are not always sufficiently severe to be mentioned spontaneously by the patient. Furthermore, in clinical practice, subtle autonomic dysfunction such as acral vasomotor symptoms or mild distal extremity discoloration may not always be fully appreciated. Finally, as distal autonomic neuropathy often does not result in orthostatic hypotension, Ewing tests, which are widely used to assess autonomic function, frequently remain normal and hence autonomic dysfunction can easily be overlooked. Some patients notice consistent worsening of symptoms with heat exposure, others with exposure to cold or with activity. Sometimes patients have increased sensitivity to pressure. Spontaneous exacerbations and remissions may also be presented. Finally, it is remarkable that many patients with SFN complain of severe and disabling fatigue.

Cause/pathology

Cytokines: Suarez89 postulated an immune mediated mechanism as the cause of idiopathic autonomic neuropathy. Moreover, it is remarkable that SFN seems to be frequent in immune mediated diseases such as sarcoidosis24,90, Sj?gren`s disease91 and systemic lupus erythematosus (SLE)92, leading to the hypothesis that there might be a common pathway in immune mediated diseases resulting in SFN. Gorson and Ropper1 suggested that an auto-immune mechanism causes idiopathic SFN, as three out of four of their patients improved on intravenous gamma globulin treatment

Hoitsma, Reulen, De Baets, Drent J Neurol Sci 2004;227:119-30

[juliegee]

Wow, thanks for all of that information, Arizona Girl. Coincidentally, I also have low IgG (around 500) and intermittently low IgA. My IgM is OK.... IVIG has been suggested a few times, but my IgG seems stable, even goes up a few points now and then. If it dips below 500, I'll think about it. I'm sending good thoughts for your infusion tomorrow. Let us know how it goes.

Julie

[Mary P]

Six weeks ago a urogynecologis diagnosed me with SFN....just from questions she asked and the answers I gave. She was a young, very bright and compassionate doctor.I got a copy of her report and took it to a neourologist 2 weeks ago. He was interested in it but said nothing. He also did nothing but tell me to come back in 6 months. I felt I was being rushed out of his office and left on the brink of tears.

My PCP won't know what to do and I don't want to wait 6 more months if someone else can help. I waited 1 year to see this N, then another 4 months and now a further 6 months to come. He was rather abrupt when I pointed out my neurofibromatosis and he asked why I hadn't mentioned it before. I said, "I didn't have a chance to mention it and I thought you'd notice it yourself". The growths on my face, arms, etc are many but not very big. Still it isn't every day that a doctor sees these.

I guess I have 2 questions then and hope someone will have the answer to one or both. 1) I see my PCP in 2 days. What kind of specialist could I ask her to make an appt with as regards the SFN? 2) Does anyone know anything about neurofibromatosis....type 1? One of my sons has this as well but his growths are much larger than mine and are apparent immediately on seeing him. Do they have an adverse effect on my autonomic dysfunction? My son had an MRI or Scan which showed the growths were not only on the outside but also along his spinal cord. They haven't effected his movement or anything else, at least not yet.

I don't want to have another MRI or Scan if no doctor can use the info to help me in any way.

Thank you for any help anyone can offer.

Mary P

[arizona girl]

I think a neuromusclar neurologist, but gosh don't really know for sure. There have been a lot of tv stories about fibromatosis. I don't know where you live but you need to see a doctor that specializes in treating that disorder. I bet there are some online support groups for that condition, they may be able to refer you to someone. When you get a response like that from a doctor, it means that your out of their field of expertise, and they don't know what to do with you. I wouldn't go back. Call around and see if there is one who deals with what you have. You could also call Phoenix Neurological Associates and tell them that you sfn along with fibromatosis and see if they can refer you to someone in your area. Your instincts to not wait, are correct, keep on pushing until you find a doctor that understands what you dealing with. Can whoever is treating your son treat you? Good luck wish I could help you more, I just don't know enough about what you have.

Six weeks ago a urogynecologis diagnosed me with SFN....just from questions she asked and the answers I gave. She was a young, very bright and compassionate doctor.I got a copy of her report and took it to a neourologist 2 weeks ago. He was interested in it but said nothing. He also did nothing but tell me to come back in 6 months. I felt I was being rushed out of his office and left on the brink of tears.

My PCP won't know what to do and I don't want to wait 6 more months if someone else can help. I waited 1 year to see this N, then another 4 months and now a further 6 months to come. He was rather abrupt when I pointed out my neurofibromatosis and he asked why I hadn't mentioned it before. I said, "I didn't have a chance to mention it and I thought you'd notice it yourself". The growths on my face, arms, etc are many but not very big. Still it isn't every day that a doctor sees these.

I guess I have 2 questions then and hope someone will have the answer to one or both. 1) I see my PCP in 2 days. What kind of specialist could I ask her to make an appt with as regards the SFN? 2) Does anyone know anything about neurofibromatosis....type 1? One of my sons has this as well but his growths are much larger than mine and are apparent immediately on seeing him. Do they have an adverse effect on my autonomic dysfunction? My son had an MRI or Scan which showed the growths were not only on the outside but also along his spinal cord. They haven't effected his movement or anything else, at least not yet.

I don't want to have another MRI or Scan if no doctor can use the info to help me in any way.

Thank you for any help anyone can offer.

Mary P