Im unsure if im abusing the system.

Last week, i could barely walk to class, or make it up the stairs, or brush my teeth at night, and now that ive had the weekend to rest I feel better, BUT still weak. I assume as the week goes on, ill still continue to have these problems of weakness and I should just go through with the IVIG, the prednisone never has worked FULLY for me, so I guess i just tell my doctor i want IVIG?

I want ot be normal, and im just wondering if im being lame and wanting this even though i dont "NEED" it for a crisis.


Thanks for any help.
Im calling my doc at 10:20 on her cell. Any feedback before that would be helpful.

This is something I could never understand about this illness.

My patients never call me and say they want to have this treatment or the other. I decide, as their physician, based on the severity of their illness, risk/benefit ratio, as well as their life style and preferences, if they should or should not receive a given treatment.

They can of course agree or disagree, raise their concerns, discuss it with me, or even suggest that I consider another form of treatment. But, I have never met a patient who wants to receive treatment. who in his right mind would want to have needles stuck in their arms, lay in bed, experience possible side effects?

If your MG is not well-controlled with the treatment you are currently receiving, every effort should be done to get your illness under better control, and as long as further treatment does not carry any undue risks or unacceptable inconvenience there is no reason why not to proceed with it.

A patient that goes into a crisis, is a patient who's illness was not managed properly, and there is no reason to wait for this to happen. most crises can be avoided by early recognition of worsening symptoms and prompt treatment.

alice

Tyson - I use IVIG as a treatment to keep me going. I don't wait until I feel like I'm about to fall out to get a treatment. I do stretch the treatments out more if I am feeling great, but have no problem backing them up if I start to feel worse. I did 1 day/week for several months and about 2 months ago, stretched it to every other week. I tried going to 3 weeks, but started feeling weaker, so I went back to every other week.

If at all possible and if IVIG helps you, you need to talk to your doc about setting up a routine of IVIG - when you do it routinely, you usually don't have to do 5 days at a time to get the benefit. As I said, I do 1 day every other week right now.
For others, it might be 2,3,4 or 5 days to get the best benefit for them. It will probably take some experimenting.

Good luck!

Tyson, Who doesn't want to be "normal" who has MG. You are NOT normal nor will you ever be unless you go into remission. That's something only you can deal with. You may possibly want to list what your priorities are, such as finishing college is more important than staying up late to socialize. You have to do a little give and take before MG takes too much.

I know of someone who is Mestinon, Immunosuppressants and IVIG. Only after all that can this person work. The side effects are overwhelming as can be the potential for some nasty infections, as you well know. I know that you and your doctor have discussed all the treatments already, so it's not going to be a surprise that you want to try IVIG. Plasmapheresis has slightly more dangers, according to the neuros I've talked to, but both have risks. You're the only one who can make that decision, along with your doctor.

I hope you can figure out a way to manage the MG, school, treatments and the rest of your life. It can be very tricky, can't it? Take care.

Annie

Hey Tyson,

mate I know exactley where you are comming from. I would love to ring my Neuro and say, I've got a very busy weekend comming up and I'm feeling a bit rundown, could I have a course of IVIG to help me cope and not go into a nose dive afterwards. But I know what his answer would be. I would only ever ask about once or twice a year, but it would help me cope with the horrible after effects of a busy weekend for me........

You are going to College, and need to be steady all the time, and have fewer dips in your life. Hmmm it would be good if you could have ivig to help you out, but it is something you need to talk to your Dr about.
take care
Kate