Went for QSART testing earlier this week. I’m no doctor (nor am I asking for medical advice), but I’m thinking my results might be abnormal based on this pic and my comparisons to “normal” results I’ve searched. Has anyone done QSART testing? Were you diagnosed with SFN? If so, how did your doctor treat or determine relationship to EM?
I’ve not had QSART testing, but have a question on process. Correct me if i’m wrong, but from my understanding there are currently no approved treatments for SFN. Therefore, what do you hope to gain from learning if you have SFN? Is it a matter of just knowing the origin of your symptoms?
It could be a matter of ruling out other causes I suppose. My EM kept being blamed on all sorts of things, but never proved until this year as all the tests were negative. Had I not been tested for these things and them coming up negative I might never have found the real cause which is rheumatoid vasculitis.
However I found this, can’t remember where relating to the QSART testing:
“To date, no prospective controlled study has evaluated the ability of these tests to diagnose a small fibre neuropathy”: So, even if it was positive doesn’t sound as though it’s conclusive.
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You’re correct! There are no effective treatments for SFN. I think the test was ordered for a few reasons.:
1.) SFN is often found in individuals with EM, so doctor felt he should test to validate EM diagnosis and/or if it’s not found validate it that way (that there’s not something else going on);
2) At this point, the doctors I am seeing seem to be doing anything to find something to treat (even though SFN isn’t really treatable);
3). In my cynical mind, if SFN is found, they can pawn me off on another doctor; and
4.) Finally, my pain doctor ordered this test so it may be part of their protocol to order tests before beginning any type of drug treatment.
I would also agree that I agreed to this test mainly to know more about what is/could be contributing to my symptoms. Maybe it will help them rule out some things and/or give me and doctors more knowledge to what is going on with me. Note: While I do have EM, it also seems like I have an underlying autoimmune disease, so the more info we can get the better to help me get a diagnosis?
While I have been diagnosed with EM, I think the test was ordered to help with greater diagnosis of what is causing EM. I also posted some other reasons on my previous reply to the post.
I agree. From what I’ve read, there are some issues with the reliability and validity of QSART testing, as well as some issues with it’s ability to diagnosis SFN. However, it seems to be considered an accepted test in the medical community so who knows 
I’m just trying to get as much info as possible
The problem with QSART testing is that it is HIGHLY dependent on the tester. Most commonly it is done by (or at least should be done) by an MD physiatrist who is well experienced They are few and far between. It is only VALID if conduction testing has first been done and is negative. as well as a negative ANA and negative Diagnoses for both Diabetes and Sjogrens Syndrome (one is easy one is not. A GOOD rheumatologist is your best friend here. The other HUGE variable is medications. There are a number of Classes that simply can not be present in any amounts (after all you are measuring a very small amount of “sweat” it doesn’t tak much to throw it off. Here a partial list of meds that are no nos"
Tricyclic antidepressant medications (and the brand names) that should be discontinued 5 days prior to the test are:
Amitriptyline (Elavil)
Nortriptyline (Pamelor)
Protriptyline (Triptil, Vivactil)
Doxepin (Sinequan)
Trazodone (Desyrel, Desyrel Dividose)
Desipramine (Norpramin)
Imipramine (Tofranil)
SSRI antidepressant medications (and the brand names) that should be discontinued 48 hours prior to the test are:
Sertraline (Zoloft)
Fluoxetine (Prozac)
Citalopram (Celexa)
Venlafaxine (Effexor)
Paraxeline (Paxil)
Fluvoxamine (Luvox)
Bupropion (Wellbutrin)
Maprotiline (Ludiomil)
Duloxetine hydrochloride (Cymbalta)
Escitalopram (Lexapro)
Antihistamines that should be discontinued 48 hours prior to the test are: Diphenhydramine hydrochloride (Allerdryl, Banophen, Belix, Ben-Allergin, Bena-d, Benadryl, Benahis, Benoject, Benylin, Compoz, Diahist, Dihydrex, Sominex 2, Tussatat, Twilite, Valdrene, Wehdryl, and Hydroxyzine hydrochloride (Atarax).
Then there are critical meds that many of us take that effect the test but are not easily discontinued (usually the day of the test is enough:
Nitro patches
Beta blockers
Calcium channel blockers
Water pills
ACE inhibitors
Also FWIW Cardiovascular Autonomic Testing IMO needs also done at the same time. as you prolly all know the autonomic nervous system also controls heart rate and blood pressure. Using breathing techniques and a tilt-table, a technician can assess autonomic function via non-invasive monitoring of blood pressure and heart rate.
What we are looking for is ANY irregularity in the autonomic nervous system. Once that is found one usually works backward to find a cause.
I would disagree that there is no treatment for SFSN. What is difficult is finding someone who can treat it. Generally what you look for is a Pain Specialist in a large multidisciplinary Pain management center. You neuroligist in the field. There are a number of meds that properly managed can help, (wrongly managed are a disaster There are at least three new anti-seizure medications being used in combination with anti-depression meds and analgesics that have great success BUT it is the combination and VERY careful titration of them that makes it work NOT walking out of the aDocs office with a prescription for the "newest Thing>
I f you are anywhere near the East Cosat I have to tell you the are performing near miracles at Johns Hopkins. Julius Birnbaum, MD hhas put togeter an amazing team concept with the Johns Hopkins Neurology-Rheumatology Clinic. One that in my opinion is way past due.
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Certainly I agree that it depends upon the tester as it does with a lot of tests. As an example I had a blood test done over two days and the blood sample was supposed to be kept under ice. On the first day it was, but on the second it was a different person and she wasn’t putting it under ice. So I questioned her about it and she got really annoyed and said she had been doing that job for over 20 years. I am afraid I also lost my temper and said perhaps she hadn’t been doing her job well for over 20 years. Fortunately, my consultant agreed with me and it had to be done all over again.
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Thanks SO much for all of the info Luckily, I read about the meds to stop before the test, and I had it done at Vanderbilt University Medical Center, which is a top-notch facility. I really was hoping they would do full ANS testing, but for whatever reason, my doctor only ordered the QSART test.
Thank you for also offering hope with the treatment of SFN. Like I mentioned, I’m in Nashville, so I will most likely get my treatment at Vanderbilt, although my doctor did offer to refer me to Mayo. Unfortunately, the cost of travel etc. is a little prohibitive of me taking that option.
I think my biggest concern is that they’ll say I have SFN. If so, I just don’t understand why. I do not have diabetes, so they’re acting like it would be autoimmune related or related to EM. I have had a positive ANA but negative on the Sjorgens.
I just looked at pictures of rheumatoid vasculitis through a Google Image search and that looks awfully painful. I hope there is something that can give you some relief from that!
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I definitely understand your desire to know the cause. How have your symptoms been lately? Is there a regular pattern or does it vary from day to day?
Yes, it’s a dreadful illness rheumatoid vasculitis. I hadn’t looked at images on Google myself just looked and I can’t understand for the life of me why the doctors didn’t think of it a long time ago. This was taken in February and it’s the leg I have had amputated. It got much worse than that later.
The white stuff is moisturising cream.
My remaining leg was much the same, but thanks to infusions of Rituximab they are slowly healing. I just have three left now one on the back of my calf, one on the left of my foot and a very small one on the front of my leg. The one on the back is the worst and this is how it was at the end of November, still pretty bad but nothing like it was.
I am having another infusion on the 14th of this month, which should have been February, but the pain is getting worse again and so my rheumatologist has brought it forward.
It’s not only things like the photos it can also affect the blood vessels in your heart etc. Basically it’s inflammation of the blood vessels.
Sorry if any of you are squeamish as they are not pleasant to look at.
I am just so relieved that they eventually after around 12 years when my symptoms first started, but very mild they found out the cause, but it was only by pestering the life out of them that I got there in the end.
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Having seen those photos, I am incredibly impressed by your participation as a moderator here. You have a strength I think very few possess, to be able to persevere through such challenges. I have a newfound appreciation for all you do.
You are an amazing person.
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Thank you for your compliments. You are not the first to say that! There are times when it hasn’t been easy, particularly after my amputation, but it gave me a purpose in life and something I can do sat down.
I also do the website for my local RSPCA and that’s something else that takes my mind off things that aren’t good. So it helps me to cope with life. If I didn’t have these things to do I would feel I had nothing to live for.
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I’m so glad you’ve been able to find purpose. There is no higher calling than to help others and you provide a great service here. For whoever saves one life saves the entire world.
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Sheltielife, I knew it was bad, but now that I’ve seen the pictures … words fail me. I’ve had nothing but admiration for you over the last months. I can see, though, that having something important to do (and, in my book, there’s nothing more important than care and kindness for others) helps take your mind off “that”. Talk about a win-win!
Thank you for posting, and for all the good work that you do!
Seenie (and I know I speak for TJ and Meli as well)
They vary day-to-day, but I usually have pain/swelling in feet and hands everyday. My flares vary…some days they’re not too bad; other days it seems like they flare on and off all day. I tend to have joint pain, especially in hands, as well as pain on bottom of feet, and fatigue daily, but I’m still not sure if this is related to EM or not. Thanks for asking
As I said to CarterDK thanks for your compliments. I hope I do a good job here although I am never confident, but that’s me I am like that. As for the RSPCA being able to help animals that have been badly treated is a great feeling. I do it for that reason as well as taking my mind off things and don’t get paid a penny. They are not allowed to pay me, but they can buy me software. The appreciation I get from them is worth more than money.
I have more infusions coming up so with a bit of luck my ulcers will improve a lot quicker. One thing is I have a great rheumatologist and these days that’s rare.
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Having pain and swelling most days is obviously not good, but having some days that are better than others is at least something positive. Do you have a day/night pattern where it’s better during the day and worse at night?
Agreed! Gotta find the positive in every situation. If anything, EM has made me appreciate the good moments more than I ever did before I had it
My flares are worse at night, but sometimes I get them early in the morning too, which seems a little odd. My EM usually flares late afternoon/evening, unless I do something like exercise, get hot, or am in the sun.
I am so happy you find comfort working with animals. I know mine have been so important to me since my EM began
And yay! for having a great rheumatologist. I’m still hoping to find one Good luck with your infusion!