Hey, Ive got a question for you all.

So the last two days Ive stayed home from school, hardly getting out of bed, and im pretty tired, yet im feeling better, with breathing and such, (i think the last week of school tired me out so much) So i was wondering, do you think i should go to school? Would that tire any of yu out to a crisis standpoint?
I know its hard to say not knowing me in person, yet i dont know if i should be attending school with such serious things going on...yet i want to.

My doctor called today and said my insurance shut me down for plasmapheresis, but hes trying to convince them. Or im going to try to get them to do IVIG.


thanks for your help.

Hi Tyson,

How can your insurance deny you plasmapheresis? That's crazy! Have you ever had it before? Did it work?

Tyson,

I totally agree with Dana! When I first read your post, I couldn't believe that you were denied plasmapheresis- you have breathing difficulties and have already had to be ventilated...I think that you should double-check with them and fight it if you can...PLEX is the fastest-working- you sound like you could be on your way to a crisis, and need something that'll work quickly. IViG can take longer to work than PLEX...I really don't get it...I hear that IViG is more expensive than PLEX too, so it's strange...

My breathing is bad, but I've never had a crisis that required ventilation, so it's hard to say what might lead to a crisis, or worsen a situation...I know that anything that tires out my muscles can lead to paralysis when I'm really bad, although my main area is the tongue, but breathing happens all day so you're working those muscles constantly...I feel for you...

It sounds like you're having a rough time with your MG, and maybe taking some time off of school might be in order..but if you start the PLEX, you can prolly go back to school because it works super fast, especially in light of the fact that you're now on prednisone, you've had a set of PLEX within the last couple of months and have had a thymectomy...I think that the PLEX will work more effectively this time...

Good luck!
Nicky

I dont know why they wont cover it, yet I have someone who works for my grandparents whos insurance im under, and she is calling today to see why they are not covering it, and what their policy is for IVIG.

I have had plasmapheresis before, 12 times, its worked wonders, i feel normal for the most part after, but only for a month then it wears off. Yet its better than being in a crisis..

Im sorry to hear about your tongue nicky, ive never had that problem, must be wierd....

MG right now, is messing with me, physically and mentally, yet ill get a grasp, just hoping its sooner rather than later.


Im not going to school again today, have a runny nose and my shoulder is really weak while typing.


Hope your all well.

Tyson,

I am really surprised that ins. won't cover plasma exchange when from what I have seen it is much cheaper than IVIG.

As for school, you know your body so you know if you can handle it. But from what I read about you, you are a go getter and very active and I am sure when you go to school you try to keep up with everyone so you wear yourself down.

IF you can go slow at school than you could most likely go back but you would need to go slow! I know this is your senior year and want to be a part of it and how important it is to you so I hope you are able to go back.

If plasma exchange gets approved {and I hope it does} than at least going back to school would be so much easier for you.

Good luck and keep us posted!

APPROVED

They just needed to get prior authorization, and i got it today, and they faxed it to my insurance company, hopefully tomorrow i can get schueduled for it at UNC.

Im so excited, its taking over my life right now.

Duke also called and wants me to be a patient there, because of my unique case. So im getting in there, sooner rather than later. So awesome.

hope you all feel okay.

That's excellent news, Tyson! I had a feeling that something was amis with the PLEX.

That's pretty cool that Duke wants you as a patient- sounds like you'll be getting top-notch care- that is awesome!

I wish you luck, and that the effects of the PLEX will stretch longer than usual- I suspect that it'll work really well this time as those antibodies are being fought from multiple fronts!

Nicky

Tyson,
Glad to hear your good news. Take care of yourself and we will believe that great things will come from this! Still praying for you my friend.
Simon

Tyson, I don't know if you are in a public or private school, but going on homebound should not be a problem EITHER way. I've even had students who attended half-days -- mornings on MWF and afternoons on TTh, for example, so that they were able to attend some of EACH class when they had things like mono -- and the teachers were flexible in giving tests and accepting assignments. You will qualify as 504 (Special Ed. Medical Disability) if I'm not mistaken -- so, they should accomodate you.

That's wonderful new Tyson! You'll be feeling stronger from the Plex, so now school may not be an issue for you. Good luck with your upcoming appt, that's great! Take care.

Hugs,
Pat