A Doctor's Note About "neurological Autoimmunity"

[sue1234]

The medical center I have gone to in the last few years to get opinions from 2 different neuros JUST put their patients' "charts" online. I was looking over the interpretive comments made from the neuro I had seen regarding possible autoimmunity in POTS. He did the Mayo autoimmunity profile on me, and everything came back normal. This was 1.5 years ago. I am just now reading his comments relating to the results, and this is what he said:

"No informative autoantibodies were detected in this evaluation. However, a negative result does not exclude neurological autoimmunity with or without associated neoplasia."

So, if these normal results don't exclude a possible neurological autoimmunity, why are doctors not trying treatment anyway? I just thought when I was negative, that that was it. I didn't have it. Do other doctors go ahead with treatments even though negative?

[dkd]

I read a book recently about how doctors will say or write things just to cover their butts just in case something comes up later. So, your doctors note sounds like a 'cover your butt' statement to me. Your tests were normal, but it cannot totally exclude the possibilty that you might have it. I don't think a doctor would treat something that a test is negative for. If there's even a treatment for that anyway???

[sue1234]

Well, I know some here with positive results are being treated with IVIG or plasmapheresis. I just wasn't sure if anyone with negative results has ever gotten treatment? It just seems that if a person is going to be doomed to spend the rest of their life with something that hinders them leading even a 50% normal life, they might try something for that patient. Especially with a many year history of something that stole their normal life overnight. (I guess this is how my optimistic-self thinks how our medical care should be vs. my reality-self seeing how we are actually cared for. I realize insurance drives all of our care).

[Natops]

I am fortunate enough that they did detect an antibody highly associated with neuro- autoimmunity. It’s enough to get my foot in the door to see top notch autoimmune specialist and try the treatments..

Well. Just speculating here… but it probably has something to do with the justification for the insurance co. The three (broad) main treatments for autoimmune disease (that are the least invasive) are – IVIG, IV steroids, and Plasma Exchange.

IVIG is very very very expensive… so you would be lucky to get a doctor to prescribe that without a detected auto antibody.

IV steroids is relatively cheap so a doctor would be more likely to run a short trail run to see if there is any positive response.

Plasma Exchange can be somewhat invasive with the likely hood they would have to surgically attach a port to your chest or put a catheter in your chest. I’m going to try plasma exchange soon… and they are hoping to go just through my arms. If anyone here has had plasma exchange please share your experience…. Or PM me

[Chaos]

Sue- I was told something very similar when I had the same tests....basically the doc said just because these tests came back negative doesn't mean it's not auto-immune, just means it might be an auto-immune we don't have a marker for yet. He has been willing to try a couple rounds of steroid bursts for me but that's about it so far.

[sue1234]

Natops, good luck with your treatment and keep us all posted on your progress!

Chaos, yea, I know they won't spend the money to try and help without a firm diagnosis. I think I'm worth it the try, but insurance wouldn't!

[E Soskis]

Natops: I am a plasma exchange patient. I had very positive antibody testing for AAG. I began plasma exchanges 3 years ago -first with an inserted permcath in my right upper chest just below my clavicle. The vascular MD then attempted multiple times to create a fistula in my left arm - it never worked and always clotted off. This was because of my chronically low blood pressure. You absolutely must maintain a blood pressure over 90 systolic at all times to keep a fistula working. So, if you have multiple episodes of low blood pressure, then you cannot have a fistula placed in your arms or legs - don't even try it! I kept the permcath hanging out of my chest for over 2.5 years until they became infected and I ended up with blood infections. My latest procedure was to have a "necklace" graft created and placed in my chest stretching from one clavicle across to the other - like a necklace may hang. It is not too visible but, it can be seen if I wear a V-neck shirt. I have used it once and it worked very well. I am trying to not have to go back to plasma exchanges so frequently - I'm stretching them to every 4-6 weeks. They are very expensive but, I have excellent insurance. (thousands of dollars per exchange) The surgery for the necklace graft was pretty awful - very painful since they cut down through chest muscles and through nerves. I had the surgery at the end of August and I still have pain but, not as severe as at the first month or two. So far, the plasma exchanges have worked well - there have been times that it seemed they were not working great but, I've always bounced back. I did use IVIG for 2 years before starting plasma exchanges - it worked great for about a year and a half but, then abruptly quit working and I started having major allergic issues with the IVIG. I wish you good luck in whatever you choose to do. If you truly are going to start plasma exchanges, PM me and I can give you some tips on how to make it go better and what you need to do prior to exchange.

[Katybug]

Sue,

I think what others alluded to is probably correct. Without a clearly positive test, it probably isn't considered medically safe enough and cost effective enough to trial treatment, other than maybe the steroids. But I tried high dose steroids (orally) and while it did relieve my symptoms within 36 hours, I had a very bad reaction (and potentially life threatening had I not been on it as quickly as I was). I know it seems like it's worth a shot but after having that reaction, I take the potential risks more seriously now, and I'm not one to worry when trying a new treatment or med. But these 3 particular treatments can be quite dangerous.

[sue1234]

Katy, you're right, I know that is the case. I'm just becoming jaded by having an illness that is not really diagnosed. I don't look at POTS as anything other than a term to explain what happens to me when I stand. There is still the whole question of what happened to me overnight almost 8 years ago to go from a functioning person to a non-functioning person. And I can't seem to find a doctor that looks beyond the label of having POTS.

I wonder, when are the researchers going to look for the "real" reason for some of our cases? I have been reading the research articles since I came down with this, and not a whole lot has come out research-wise to explain possibilities, other than Vernino's autoantibody cause. THAT is the kind of research they should all be doing...looking for that elusive reason this all hits some healthy people so suddenly.(I know some of you are chronic and would have a different basis).

I think my normally optimistic disposition went on vacation!LOL

[Katybug]

It's a good life if you don't falter? Right? I totally get being jaded. Sarcasm oozes out of me daily. : -). I just had a geneticist appt today and we're revisiting a line of investigation (actually one that is probably of interest to you...cervical instability). But, there is a part of me that wants to run screaming in the other direction because I'm so sick of new patient forms and retelling my story only to be let down. Then, there's that eternal optimist in me that gets sucked back in to the tiny little pinprick of light at the end of the tunnel. Definitely jaded but I'm still smiling. :-))

[davecom]

Sue - I've gone down the exact same line of thinking that you express in this thread... yet I believe the other posters are right - it's all about insurance company justification. If the treatments didn't cost thousands of dollars (IVIG for example) then I'm sure given the knowledge we have of the nerve damage in POTS being autoimmune in nature more of us would be put on immune modulating therapies by our doctors. That's life unfortunately - money and luck of the draw. I had moments where I wished some of my autoimmune marker tests had come back positive because then I could justify some treatment... on the other hand the fact that nothing comes back positive also makes me think that perhaps what happened to me was a freak one time event (some bizarre reaction to a virus), I don't have an ongoing autoimmune disease, and this destruction won't happen again. Wishful thinking - but at least it's positive thinking.

[Angel1234]

Hello everyone! I am new to the forum. Can anyone explain what neurological autoimmunity is and what tests are done for it? I am being treated at cleveland clinic and have never heard these terms used by them.

[Katybug]

There is an autoimmune panel that can be run by the Mayo Clinic labs (your blood can be sent there if your doc orders the tests) that tests for autoantibodies that would attack your nervous system tissue and therefore be the cause of pots as well as other issues. Does that help?

[Angel1234]

Thanks katybug. Do you mean a panel that would test for additional or underlying autoimmune diseases like Sjögren's, lupus, celiac etc. . .i had all those done. I am just wondering if my team at cleveland misses something they should've checked for. . .i did find out I have celiac.

[Angel1234]

Sorry- I am just trying to educate myself as this is all so new. Or do you mean a test for autobodies just in general that can attack nervous system without specifically for a certain disease/disorder?

[Angel1234]

Antibodies* I hate autocorrect lol

[Katybug]

It is different autoimmune tests from those for lupus, sjogren's, etc. It is a panel that is currently only conducted by Mayo laboratories specifically for autoantibodies that attack certain parts of your nervous system. I haven't had this specific panel of tests because my pots neuro doesn't feel I fit the symptomology that warrants these particular tests but it still may be worth it for you to talk to your doctors to see if you fit the bill.

[yogini]

This dr should have explained better. Maybe you should have a follow up appt? It sounds like he believes your symptoms; at least He doesn't say you are making it up. My guess is that he doesn't gave bad intentions but just has no idea what to do next.

There isn't enough medical knowledge and testing isn't accurate, not just for POTS but for so many conditions. I know this from my experience with a misdiagnosed inner ear condition. What does it mean when a test says it's 75 percent likely that you have a condition? Should be a simple yes or no answer, but no such luck.

With no knowledge, there are few drs who will take ownership to help us sort this out. Very frustrating as a patient.

Edited November 17, 2013 by yogini