Have You Been Diagnosed With Or Suspect Neuropathy?

[ramakentesh]

https://docs.google.com/viewer?a=v&q=cache:ht5wko0eRZEJ:www.mc.vanderbilt.edu/crc/aas/2012/meeting/2012AASProgramAbstracts_CAR.pdf+postural+tachycardia+interleukin&hl=en&gl=au&pid=bl&srcid=ADGEESiUTpRkcDnALaue8npI4jlvg0YwgP7KENyJMX3O4vz1uBYtawh_rsW7VH1nQd-1JANE7uQVHUQMkS7a1KSHT2o7_f-6qH5_s1Bmb1hB6GPnvUKqF1hZIt-lHwcAN5k5QcZs3uKF&sig=AHIEtbTTgJqcj3cQcSN03Wdi2G5tzeI5kw

[ramakentesh]

Arizona girl - yeah the studies often have small cohorts so its hard to say where people fit.

[gackedo]

I need some advise related to this topic. I have been diagnosed with POTS as well as progressive polyneuropathy. My POTS is under good controll but the neuropathy continues to get worse, despite increasing doses of Lyrica. My neurologist has recommended that I see a another neurologist who specializes in neuromuscular diseases. I live near Dallas and have an insurance that many physicians won't take. She recommended a former colleague of hers that is the head of neurology at the University of Kansas. I noticed on the peripheral neuropathy link posted at the beginning of this thread that the University of Kansas is one of thier recommended peripheral neuropathy centers and they take my insurance. Does any one have an experience at that center or can anyone recommended someone that they had a good experience with.

[issie]

Alpha Lipoic Acid is supposed to be one of the best things to help with neuropathies. I have read some really good reports about it.

Issie

[Suthrngal]

How do most heal this neuropathy that feels like a "electric current" as mentioned in the link provided above? Mine was sudden onset.

[Suthrngal]

Also MTHFR and b12 drainer. Hmmmmm.

[HopeSprings]

Since this post has been bumped up and I am still putting puzzle pieces together..... just wanted to post an FYI. I have now had THREE skin biopsies, the first showing neuropathy, the second two not showing it. So I asked for the QSART (which I thought I had before but turns out if was a different test) - just had it done and it was very positive. SO I think if you're looking for neuropathy and one test shows negative, get the other test done just to make sure.

[Suthrngal]

QSART test? Is this one MAYO does?

[Suthrngal]

Disregard te question about qsart. After looking it up , I had this and it was normal. As was the sweat test. Does this mean there is no neuropathy?

[davecom]

My understanding is that it means it's much much more unlikely, but that a skin biopsy is still the definitive diagnosis. If it's not otherwise suspected though, probably no reason to do a skin biopsy, right?

[arizona girl]

My Neuro utilizes all three. He said often SFN is patchy and can be missed. You have a better chance of finding by doing all of them.

I was fortunate, mine showed up with just skin biopsy.

[kitt]

Mayo MN does the Qsart test but they also do a Thermoregulatory Sweat test...Only done at the Mayo in MN. This is a very difficult test. The entire front of your body is covered with a powder and then you're but in a very hot clear 'box' and they crank the temp up to about 110 degrees.

The powder is also on your face and just about every inch of the front of your body with small drapes discreetly placed.

It's a wicked test. On the areas where you don't have SFN the powder turns purple like Barney the dinosaur. They can unzip windows to add powder. I could see at the end that my feet were still yellow which is a sign of SFN. (Meaning my feet didn't sweat enough to cause the powder to change color.)

Generally SFN starts in the feet (longer nerves) and moves from there. In Parkinson's and other autonomic illnesses it has a very different pattern.

I had complained of numbness in my feet which progressed to pain.

This test is illustrated on the internet. It's wicked to get off. They have you shower there and it looked like I had killed a deer in that shower. Crazy.

They take photos of you throughout the test and one of the autonomic doctors interprets the photos. Mayo puts a tremendous amount of effort into this test and take it very seriously.

Best,

K

[Psalm 23]

I have been diagnosed with both autonomic and small sensory fiber neuropathy. These diagnoses resulted from abnormal autonomic reflex screen, qsart, skin punch biopsies, symptoms and neuro exam.

I have found taking Alpha Lipoic Acid to be of some benefit in relieving pain.

Janet

[Goschi]

I have been diagnosed with a very mild form of small fiber neuropathy in my lower legs.

However, I have been reading about "Autonomic Neuropathy" quite often. But yet, I didn't understand exactely what it means (i.e. what it IS) and how you get tested for it, and what Treatments are existing.

I asked a few doctors (Neuros!) about Autonomic Neuropathy and always got the answer: "This is just an incorrect term, there is nothing concrete behind it and thus of course no specific treatment available."

Can someone here shed more light on it...? Thanks in advance!!

[arizona girl]

Hi Goshi,

The correct term for neuropathy that can effect the autonomic nervous system is "Small fiber neuropathy". The large fiber nerves are the ones that control your motor skills like moving your arms and legs. The small fiber nerves control all the functions that your body does without you knowing they are working if they are working right. When they aren't working right, you can feel it. There are several types of small fiber nerves, some control sensory or pain functions others control all your other autonomic functions like heart rate/BP, temperature regulation, digestion, the ability to sweat, etc.

There is very legitimate testing for small fiber neuropathy today, skin biopsy and qsart, along with testing the autonomic functions with tests like the Tilt Table, can prove it exists. The causes though for this type of neuropathy are "endless" as my neurologist told me. The most common cause is diabetic neuropathy. However, to name a few, autoimmune diseases, small cell cancers, toxic exposures and injuries can also cause it. That is why it is important that one looks at all their global symptoms even if they seem unrelated to each other. Defining your symptoms along with your diagnostic testing can point towards a proper diagnoses if your dysautonomia appears to be do to a primary cause.

In my case after much testing including everything I mentioned above it was proven. We then went on to find I also had 3 autoimmune disease that like to party with a primary immune deficiency called hypogammaglobulinemia or cvid.

I have stopped declining and have had improvements once we started treating appropriately. We are still tweaking with hopes of further improvement. Autoimmune diseases are difficult to treat, so I still do struggle, but I am grateful we can at least manage it.

I hope that clears up the confusion. I can't say I agree with the comments your neuros expressed, as mine feels exactly the opposite. However my doctor does specializes in autoimmune neuromuscular diseases, which is a very specialized area of neurology, that many mainstream neuros are not as educated in. I always listen to my gut, when evaluating a physician's opinion. We are all human and can have biases, that is even true amongst the centers that are doing research.

[Goschi]

Thanks a lot, arizona girl!!

Now I understand much more about this quite complicated matter.

In fact I had a TTT, (highly positive), a skin biopsy (result "borderline" for small fiber neuropathy in lower legs, thighs ok) and a qsart (clearly negative). However, no one diagnosed me officially with "autonomic neuropathy". I only got the diagnosis "Pots" and "probable small fiber neuropathy".

In addition, an immunologist ran a huge number of tests (results consist of 67 pages) and nothing really bothersome appeared.

The only point is: The neuro as well as the immuno docs never looked at the test results from the other fields ("So sorry, really don't understand enough", I got to hear from both sides).

Anyway, I can't imagine (or at least hope so) that the immuno doc really missed something...

[arizona girl]

Your welcome. A few more thoughts come to mind after reading your last post. Small fiber neuropathy is often patchy, which is why a neuro who is up on it will do more than one test. You can have a one be neg and the other positive. In my case the skin biopsy was enough to show I had it. While they take a skin punch at both the lower leg and the thigh, small fiber is diagnosed by the lack of density of the nerves on the lower leg. If there is also damage at the thigh level it means a different type of neuropathy.

A borderline diagnosis then would be made by the density not just the location. Do you know what you're density was and the range that was used? A year later without any real treatment on board yet, my density had reduced further. So it is a test worth doing again. Personally I think the skin biopsy is the gold standard and better than qsart. If you have issues with heat regulation and sweating then the sweat test they do where they coat you with purple dust and put you in a hot box, will really show where that nerve damage is when it comes to sweating.

Immunologist are also allergists. Did they do allergy testing on you? I can't imagine what else sixty pages of immunological labs would consist of. Hopefully you read all of these yourself.

An immunologist trained in treating primary immune diseases, (most are not) can also test to see if your global immune system is working correctly. That test is call a Total quantitative immunoglobulin and consist of your IGA, IGM, IGG, there is a sub IGG panel, igd an ige (ige shows allergic reactions) Then a vaccine challenge test if any of those come back off.

Do you have diabetes or been screened for other autoimmune, endocrine, rheumy or hematological disorders? When you say your TTT test was highly positive what does that mean? Tilts can point to a variety of dysautonomias. What are your symptoms that cause you the most problems? The reason I ask these questions is depending on what your responses or diagnostic finding are it will point you in better direction to manage it.

Sometimes a cause of the neuropathy can't be found yet, it is then consider idiopathic and the only options are to manage it by treating symptoms. Eventually though if new symptoms occur one may find the cause, so it doesn't hurt to periodically revisit certain testing.