Im not sure how to go about asking my doctor when she says I still need to try one more med.

Im on monthly IVIG- which is whats keeping me strong. She says the Imuran lab reports are showing consistancy (increasing). Right now they are at 96- were 86 when i started, and *need* to be 100 before it works.

I told her if when they get to 100 it doesnt work without IVIG, im done with it and want to get the stem cell treatment reboot done. When I said this last all she said was- we need to try one more medication then we can look into that.


I just want the reboot done now...I dont understand. Ive applied to a trial in Chicago- they said they would have to bend the FDA rules for me to get accepted because of my - antibody test.

The people at johns hopkins should do this for me, as I am their patient and have tried all other options. Even with the IVIG my eye is still droopy and right arm/hand gets weak when typing.

Thanks for lettin me vent!

Tyson I hope they let you have the reboot. I finally got a little boost after my second IVIG treatment. My double vision has improved when I'm well rested. I still get very tired as the day progresses. How long it will last and my doctors next step is now uncertain. Keep us posted on your progress.
Mike

Mike, I'm glad you got _some_ response, anyway! Here's hoping it's just the beginning.

Abby

Thanks mike- I'm glad you are getting some benefit from the ivig...it seems to be working less and less for me but who knows! Maybe that's just me. Haha hope your doing well.

Im beginning to think I don't have this disease as I'm left w one drug left to try...

Tyson, I hope others will correct me if I have this wrong, but the fact that you have responded so dramatically to IVIG proves that you have an autoimmune disease, at least. Even if, by some weird fluke, it's not MG--or not a kind of MG we understand yet--the treatment's going to be basically the same, right?

I have seronegative MG with almost no eye symptoms, and (I've decided) no response to Mestinon. So I get to thinking along these lines, too. I did have a noticeable (though short-lived) response to the IVIG, though, which helps to set my mind at ease about my latest course of treatment (Imuran).

Abby

Tyson tell me more about your Imuran treatment please. How much you take? How long you been on it? Tell me more about this Imuran test they do. I have never heard of it. I take 150mg daily, been on it for 5 months and my Dr wants to increase it but wants to find out why I can't eat. (lost 20 lbs) I really see no results from meds. However I did miss a couple time release Mestinon and both times my right eye closed completely. So I know the meds are helping but I just don't notice it.
Mike

Hey, Tyson, how many times have you had your blood tested for antibodies? Would it be worth asking to be tested again? My neuro has tested me three times already, because he says he has patients who test negative at first, and then positive later. Wouldn't it be great if you could get that positive test, so you'd be OK'd for the new treatment?

Abby

Hey mike- they do an liver function test every month to check the effectiveness. I've been on it 7 months almost 8. So it should have started working I would think..

I've been tested 3 times just had it done before an ivig treatment and it still showed up negative.. So not sure what's up w that. But I agree w the auto immune disease..I just wish I had antibodies I guess

Tyson, Has anyone ever checked your CPK (creatine phosphokinase)? I'm asking because of all the pain you've had. Did they do a thorough differential diagnosis before treating you for MG?

Stem cell transplant is very tricky and undergoing chemo is no simple feat, especially since you're prone to infections. They have to weigh everything when making that decision. I know you want a remission but at what risk? I was always concerned at the number of drugs they threw your way. I realize you have a serious form of MG but more isn't always better. Look at all of the side effects you've had. And you are very young. You don't want to fry out your body and use up all the options so soon . . or do you?

I hope you can find a balance and treatment that works.

Annie

Yeah they have checked my CPK- normal. Nope they didnt do a differential D.

I understand that the stem cell transplant is a very sticky topic..yet Im 18, im otherwise healthy. I WANT to be a doctor, and with everything that happens to me from this on a daily basis...Im not sure it would happen. Im going to make it happen whether or not I have the disease, thats for sure but i just would like it if i didnt have to take the pills everyday and get the side affects, you know?

I do understand your concern and appreciate it. I am taking it into very careful consideration, i doubt NW will break the FDA rules for me...id be surprised.

Thanks for ur help annie


How r u?