AnonymousOctober 6, 2009 at 2:06 am
Hi fellow CIDPérs
I was just wondering how the presence of anti-Mitrochrondial antibodies would impact on my CIDP?
Apparently, my blood test for anti-Neuronal antibodies was uninterpretable due to the presence of these anti-Mitrochrondial antibodies.
Anyone had this?
AnonymousOctober 6, 2009 at 2:50 pm
I’ve never heard of it so I googled it. Here is a link explaining the AMA’s.
Knowing now that AMA’s are immunoglobulins might mean that any IVIG you have received could be messing with your test. However, IVIG can affect your liver function, so I think further testing should be done.
It’s pretty much impossible to get a correct ANA after having IVIG.
If it were me I would request a liver function test. I googled liver function tests & got this link:
Also, ALT & AST tests should be part of your normal blood work up that you should be receiving on a regular basis while getting IVIG.
AnonymousOctober 6, 2009 at 4:25 pm
Yes once again we are clones in this disease – about 3 months ago I had the same test result however getting any of my doctors to do more than raise an eyebrow and scratch their heads is challenging if not impossible. :rolleyes: So many of my test results turn up whacko for brief periods of time indicating one or another problem that seems to disappear within a few months. I think it’s safe to blame the IVIg for some of the skewed test results but the rest I’m just chalking up to having a rare form of a rare disease. :p
AnonymousOctober 7, 2009 at 12:47 am
Thank you Kelly and Julie for your replies.
At the time of the test I hadn’t had any IVIG or medication – so I’m not sure what is happening. Though, after checking out your link Kelly on AMA’s it may be another autoimmune response to add to my already hyper-active immune system. Yes, I’m going to have my liver function checked.
Julie, I’ve had some different antibodies show up over the course of my CIDP too. After one attack, my smooth muscle antibodies where raised.
Thanks again for your input 🙂
AnonymousOctober 8, 2009 at 5:10 pm
And I request for a copy in writing to present to docs.
WHY? Because I’ve over a dozen docs I see 1/2 regularly, 1/2 intermittently and I bring copies of these tests. This way I make copies for the docs, not the lab and it saves everyone time and resources [not to mention I get to SEE what’s going on good/bad about my workups].
I have struggled to learn about what these things ‘mean’ and lots escapes me, but it doesn’t take a genius to figure out that anything w/an asterisk [*] after the test result # means it’s either too high or low. I’ve been interested especially in ‘metabolic test’ results where, at times being just within acceptable #’s but either too high or low can be helped thru some simple supplements.
I have teased many of my docs about only paying attention to the results with the ‘*’s and they agree that’s what they do.
I also make a copy of the lab orders, so I can be sure that what all was tested WAS what was ordered.
However, in some states and maybe other countries, getting copies of these and also depending on some docs even can be harder than finding a winning lottery ticket.
YOu can check if your tests are right in the US by the lab code/ins/code #’s, I don’t know about elsewhere.
IF you know the name of the particular test? Usually you can find out a good deal about what ‘normals’ and ‘abnormals’ mean. Good luck!
And I agree with others – check those liver function #’s! They are going to be a bit ‘off’ if you are on IVIG, PP and many of the anti-seizure meds we use for that pain. How much off depends on a whole lot of other factors which all can get very complicated. Keep learning about it, please! Maybe you can then clarify things for me!
AnonymousOctober 9, 2009 at 7:31 am
I have a binder full of all my lab tests, radiology tests, neuro tests, consultations and so on – new doctors get a copy of everything whether they want it or not. I also made up a spreadsheet with my lab results so I can see the changes over time. I can’t tell you how much my doctor loves those little charts :rolleyes:
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