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Results from Vanderbilt


Dizzy Dame
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Hi all,

As some of you may remember, I've been at Vanderbilt the past two weeks in the CRC. Today is the discharge day, and also the day I found out what exactly is going on with me.

The diagnosis of POTS was confirmed. They also found that I have a low volume, but not low enough to explain all of my symptoms. I've been put on Midodrine 3x a day, and we will try a combination of propanalol and mestinon if the midodrine isn't working.

Early in my stay, they drew to test for antibodies, and the test came back positive. I'm waiting right now to find out what this means, but it could mean that I have an autoimmune disorder causing the POTS.

I was wondering if anyone has tested positive for the ACH receptor antibodies? These are the ones that came back positive. They are still waiting for the results of the methylhistamines, I'll keep you guys posted on that.

So, all in all, Vanderbilt was extremely helpful. I learned volumes about my condition, and about the mechanics of all autonomic disorders. I'd reccomend the program to anyone who can handle going off thier medications.

If any of you have specific questions about Vandy, feel free to PM me and I'll try to answer you.

Cheers,

Lauren

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hi lauren -

i'm glad to hear that your experience at vandy has continued to be a good one. there have been several discussions on the antibodies you mention but as far as i know no one has tested positive other than tracy who also has MG. there are a few who are in the middle of getting/waiting on test results as well. the test itself only tests for a particular, recently discovered antibody so while mine is negative my docs are considering treating me "as if" with the theory that there is likely a yet-to-be-discovered antibody lurking for me. the treatment based on my reading & discussions with a few docs is either plasma exchange or IVIG but i'm definitely not an expert in that realm.

good luck with your travels back,

:-)melissa

p.s. if you think it would help you they may be able to give you IV fluids before you leave to "pump you up"!

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Guest Belinda

Dizzy- I am glad tht your trip to Vandy wasn't a waste of time but sorry to hear the not so good news but hey it might help relieve some of oyur dibilitating ordeal.

I was tested for these antibodies and will soon find out the results of them and will let you know what the doc. has to say about it.

Hope your travels home are better than when you traveled home from Dr. Grubb!!

Take care-Belinda

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Hi, Lauren

I'm glad the trip to Vandy was worthwhile.

I also have elevated AchR antibodies. Last week I saw an MG specialist who also took more antibody blood tests, some of which are not back yet.

It is my understanding that if the AchR antibodies are positive, you do have myasthenia gravis. I was told I have it but I do not display symptoms.

Obviously, there is some autoimmune response going on with me and my questions are, as of yet, unanswered.

As to IVIG ( which is used to treat some with autoimmune disorders, and which was mentioned to me by the doctor), after reading stuff on the myasthenia forum about it, I'm not sure I would ever do the IVIG unless my life were in danger - i.e. I couldn't eat or I couldn't breathe. It's very VERY expensive and (I think) should only be used as a last resort, if at all (my opinion).

To view my thread on the MG forum concerning positive antibodies, negative symptoms, you can view:

http://brain.hastypastry.net/forums/showthread.php?t=118993

Maybe you have to sign up for the forum first. I forget.

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Lauren,

I imagine you're referring to regular achr antibodies and not the ganglionic type that they look for in POTS?

The regular achr is associated only with myasthenia (and snake venom :(), and indicates myasthenia gravis. One can have myasthenia gravis and not be positive for the antibody as well.

I have both active symptomatic myasthenia--without the antibody-- and POTS, and it seems the two conditions like to gang up on me simultaneously. I asked the neuro about it, he thinks it's entirely possible there is a connection. What are your other symptoms that aren't accounted for by POTS? Are you having shortness of breath that is not being caused by the POTS? If so, please follow it closely, that could be a dangerous complication of myasthenia. I have it and feel lucky to be alive as I had a "myasthenic crisis" of sorts that was not taken seriously because I was not yet dx with myasthenia, and the docs wanted to blame everything on POTS. Anyway, if you'd like further info, feel free to contact me.

If you are told you have myasthenia and are taking florinef, check with your doctor, it's on the "bad list".

Happy you are getting some answers. Knowing what you are dealing with is most of the battle.

Ariella

Oh, as for IVIG, I wish I could do it. My insurance won't cover. It is very expensive, but for someone whose symptoms cannot be controlled by mestinon alone, it is considered a safer alternative to immune suppressants/steroids, with the exception of those who have had adverse reactions to it.

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okey dokey. i get the brain fog award of the day (or the day when i posted my first reply) as i was mixing up the antibodies. sorry!

:( melissa

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