Plasma exchange

[Traci]

Hi everybody,

It's been awhile since I last posted, for I was hospitalized again.

I went to Mayo just over a month ago and I just found out today that I tested positive for the ganglionic acetylcholine anitibody, as well as the other achr antibodies that I was previously diagnosed with.

I started plasma exchange, I've had 5 exchanges so far. I feel like I have a little more strength, but my autonomic problems are still fairly heavy.

They say with my myasthenia the plasma exchange should help right away, but with the autonomic neuropathy it'll take awhile.

I guess I'm going through alot of different emotions presently, for most of the Dr's where I live thought I was a psych case, even a highly regarded autonomic Dr wouldn't help me. Luckily I went to Mayo.

I have my fingers crossed in regards to the plasma exchange, I'm also now on cell cept and prednisone. I feel like a walking drug store.

What I am going through seems to be all caused by an autoimmune response, Dr Fealey was right.

The exchange itself is tiring. It also lowers my bp, but I can obviously live with that if it helps me in anyway,

I'll keep you all updated, for I'll probably be continuing on with plasma exchange for awhile. My Dr said in a month I should be feeling better.

Traci

[cnm1]

Traci

Good luck!!! I am hoping to get Rachel tested the ganglionic acetylcholine anitibody. I really, really hope this works for you.

Louise

[Laura]

Hi Traci! I'm glad you've been seen by mayo and have some appropriate treatment options available. How long does it take for each plasma exchange to run through? I sure hope this gets you feeling better! What sort of outcome should the plasma exchange bring? Will you need to continue to have this done every so often, or will this get you stabilized and then you get put on something like mestinon? Thanks for letting us know how you are doing! Take care. Laura

[biatecki]

Hi Traci,

Its good to hear from you ,Ive been wondering how you were doing and I`m happy to know that you have been at Mayo and in good hands .You have had a rough time of it and I do hope the plasma exchange helps.Do you think BC Medical will pick up the cost of Mayo?Initially I had to go to the UK to get diagnosed but could not get re imbursed . At least you know you have had the best medical treatment available.

Just hope you soon feel much better

Margaret

[MightyMouse]

As always, it's so nice to hear that you've found a doctor who not only believes you, but treats you so well. Please continue to fill us in on how you're feeling following treatment. Your the first person I know of on the forum who's tested positive for the AGA and is getting treated for it via plasma phoresis. I hope that you see many improvements over time.

Nina

[wareagle]

Hey Traci..sorry you're going through so much..but happy that you've found someone to help. I'm anxious to see how the plasma exchange will benifit you..ever since Mel posted that article I've been wondering about it. My doc. in FL is going to order the test for me as well..just haven't figured out how yet..I believe Mayo is the only place that does the testing. I did read that this treatment is used for a variety of other disorders too..like myasthenia..so I hope it will start to help you soon!!

On a side note about the MG..the quarter back at Auburn University (my alma mater) has MG..he apparently was out of school for awhile for treatment and now he's the starting quarter back and doing very well! Goes to show that you never know what's around the corner with these disorders..keep your chin up!!

[ariella]

Hi Traci,

I'm a myasthenic too, so I found your post especially interesting. What I don't understand is the difference between the ganglionic acetycholine antibody and the regular achr test. I tested negative on the regular one, but positive on other diagnostic tests and am being treated for myasthenia. I take 60mg of mestinon 5 times a day. Right now I'm in a hole thanks to the flu shot a month ago. I imagine they will be adding prednisone and immunosuppresants in the near future. It would be interesting to see the results of a ganglionic achr test.

I hope you will be feeling better soon. From my understanding, you are lucky to have an insurance carrier that approves plasmapheresis. I'd like to request it for myself, not sure what I'm going to be dealing with in terms of red tape.

Ariella

[joanie]

Traci, How is it going? I am very interested in this. I sure hope you will soon begin to feel better. Anyone else out there been tested for this? Best wishes to all- Joanie

[Sunfish]

traci -

sorry to hear things have been so rough but hopefully things are at least heading in the right direction for you in terms of answers & treatment.

i really hope that you start to reap the benefits of the plasmaphoresis soon.

thanks for checking in with us.

hang in there,

melissa

joanie -

myself & a few others (at least) have been tested...for me it was a disappointing no go.

mayo is the only place that tests for the one type of antibody that has been linked directly to successful plasmaphoresis treatment of autonomic dysfuntion if present. there are others antibodies but to date my understanding (via several of the autonomic guru docs) is that there haven't been direct links to treatment options for all of them. the test can be done in other locations though & sent to mayo but this sometimes takes some effort (& trial & error).

here's a link to a recent publication and the forum discussion afterward:

http://dinet.ipbhost.com/index.php?showtopic=3735&hl=plasma

hope this helps...

melissa

[joanie]

Thanks, Melissa. Somehow I guess I missed the earlier posts...Anyone else have any info? Traci, we're still pulling for you!!Joanie

[momdi]

Hey Traci

Any update on this? We're headed to Mayo on Jan 16th and suspect this might be included in the work up there and would like to know what to expect.

thanks,