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Plasma Exchange as treatment possibility


Sunfish
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hi all -

i found out about a study in the New England Journal of Medicine that i wanted to pass on. obviously this isn't a fix all, but perhaps interesting/promising for some. essentially it's a certain antibody that, if found, has shown - at least in study - that if removed from the blood/plasma - brought drastic improvement in autonomic symptoms. obviously it's only an option IF you have the antibody, but still pretty cool.

here's the link to the article summary:

http://content.nejm.org/cgi/content/abstract/353/15/1585

the doc brought it up & i had the antibody testing for it yesterday...if anything comes of it i'll obviously let you know. ironically enough i had the testing done in baltimore but it was "in transit" to mayo when i went to vandy so they then didn't do it. and then it ended up getting processed incorrectly. so hopefully this time i'll get a valid result.

B) melissa

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Melissa,

Interesting. Sadly enough. Dr. K called for the paraneoplastic antibody panel to be done for me so that I could have that antibody titer to ganglionic achr receptors done (that your article refers to). Mayo ran my blood though but did not do my test correctly. I wound up getting a titer done for achr antibodies - the same one they do to test for myasthenia gravis.

I give up. HOW did you get your dr. to do the test properly?

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the same thing happened to me when dr. khurana ordered the test. but the docs at vandy & dr. grubb weren't surprised & said they've had problems too. vandy has figured out how to get it done correctly but didn't do it since we thought i'd had it done & was just waiting for results. the doc at CC (dr. shields) said he hasn't had any problems as long as people get the bloodwork at the clinic & not at an outside lab. so...i'm hoping the third effort for me is a charm, but i feel your frustration. unfortunatly i don't know how to direct getting it done correctly. maybe calling the lab at mayo? or having it done at a hospital lab rather than one of the freestanding labs? i don't know if this would help at all....

b/c yep, the same thing happened to me.

sorry i don't have any better suggestions B) hopefully with the research published it will become easier to get the test run (correctly).

:blink: melissa

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Thanks for the link--that is now the first treatment listed for the vernino antibodies (antibodies that attack acetylcholine receptors on nerves in the brain)...

BTW, the testing wasn't available anywhere except Mayo in the past... I think that's the place to call for info on getting the blood tested.

interesting! Nina

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yep, mayo is the only place that does the test.

blood can be drawn elsewhere & sent to their lab though, but (as evidenced by some of our unsuccesses above) this is often easier said than done....

:) melissa

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this is interesting to me...

I don't know the connection between the 2 diseases, but I have dysautonomia plus myasthenia gravis (or myasthenia with dysautonomia :) ) and mestinon is prescribed for both conditions. Now I'm reading that plasma exchange will work for both as well??

Many of us here on dinet have muscle fatigue. I'm wondering if there's some connection?

Anyway, I found this interesting

Ariella

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Hey guys..this does sound interesting! I couldn't read the article b/c I'm not a registered user..but I had a couple of questions maybe you could answer. Who should have this test done? Is it only indicated for those who have a dx. of an autoimmune issue..or could anyone have this anitbody and just be unaware? I think the testing was mentioned under the "possible causes" section of DINET along with info on Lupus an Guillain-Barre..does that mean that people with this antibody HAVE an autoimmune issue?

Sorry if this is confusing!! I was just hoping maybe this was an avenue I could explore with my doc...I'm starting to feel pretty hopeless with my treatment options..just seems like nothing works for me :D

Love to you all-

michele

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Ooops I didn't see this topic, before posting the other plasma exchange one.

Sorry guys.

So plasma exchange musn't be harmful for people with dysautonmias.

I don't know about my ganglionic achr receptor anitbodies, but my achr antibodies are high.

How interesting. I wonder if this will help me.

The doctor today told she's going to try to get it started next week. I'll keep you all informed if it helps.

Traci

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