Tracy, I hope you are in good hands. When you can let us know how you are. We are thinking of you. Annie59

Bumping up for Tracy again. I hope you are okay. Please let us know when you can.

Annie

I'm okay, and I'm sorry I haven't been back to update. I managed to get through it and sleep it off. I've had a few other bad spells, almost went to ER last night as well. I just feel as though I'd be in the ER weekly if I went every time. Last night I laid on my side, relaxed, and eventually things calmed down.

I get really wiped out from IVIG and it seems after it I have trouble breathing for a couple days, though that was before. I think I get breathing trouble whenever I get really tired from talking or doing too much, which doesn't take much because I'm bedridden; but if I talk a lot at doc appts, etc forget it.

Thanks for caring. I'll be on here more.

Tracy, I highly recommend you at least call your doctor's office. Shortness of breath may be from MG but it may be from other things like a blood clot. Please see a doctor. I'm sorry you are still doing so poorly.

Annie

Do you happen to know which brand of IVIG you are receiving?

IVIGs are different in the way they are prepared and contain different additives. some contain sucrose, some glycine. some come as liquid and others are lyophilized (powder form) etc.

the side effects you are experiencing may be related to the additives and not the IVIG itself, and may improve with a different brand, that does not have the same additive.

Also, it sounds like you could benefit from a bipap. did you ever have formal respiratory tests/ sleep study?

I am on Gammunex now. Prior to that I was on Gammugard, and I had some pretty bad side effects.

I need to make an appt with my neurologist, who I see for Lyme disease. I have not seen him since I got his call that my MG test was positive.

Also, I did have a sleep study a few months back. I have not been back to the doctor for the follow up and to get the results. Another appt I need to make, along with a zillion others. These two are top priority though.

Your top priority is to call that neuro and get in on Monday. They always have same day appts. if it is urgent. It is urgent.

And whomever did the sleep study can fax it over to your neuro's office. It wouldn't take more than ten minutes. Your neuro needs that info.

Please, get this done right away.

Tracy,

I was suspecting you are on Gammunex. Gammunex has a very high concentration of glycine (and so does liquid Gammaguard). Glycine is a calcium chelator. this means that it leads to minor changes in the level of calcium in your blood. such changes that will not have any effect on normal, healthy people, or even most patients with neuromuscular disease, but some MG patients are extremely sensitive to those minor changes in calcium.

most neurologists are totally unaware of this problem, even though it was described in the medical literature. and I believe that 99/100 neurologists will attribute shortness of breath to "anxiety", so obviously will not report this unimportant side effect. (that is why it is very hard to tell what the true extent of this problem is).

the bottom line is that you may want to try and switch to an IVIG preparation that does not have glycine in it. although, all IVIGs contain additives that decrease the pH, so may have an adverse effect.

I also agree with Annie, that your respiratory evaluation should take first priority. This is not something to play with. If you have difficulty moving your arms or legs, it will not endanger your life, whereas a similar difficulty in your breathing muscles will. the only way to let them rest and recover is by using a respirator that will "breath" for you.

again, most neurologists have no understanding in the respiratory manifestations of MG. one "genius" recently wrote in a letter I received from him- "she was very unwell, but had no significant deterioration in her respiratory state, although required support by her bipap."

For me I totally agree that neuros dont understand breathing stuff and MG. If I could find one that did I'd be diagnosed! My great pulmo has now taken to cutting and pasting my pulm test results into his notes so they hopefully get that I am consistantly declining. He has tried to go into more and more detail including how the big change that occurred in a set of pulm tests that were done before and after a pose of mestinon.

None of this stopped the last neuro from telling my daughter I wasnt gonna stop breathing so dont worry AND that a person can have breathing problems from deconditioning her way of dissmissing my pulm results. I wonder if she even let the 2 students go over the pulm reports. They werent even aware of the neuro that admitted me for myasthenic crisis.

He put in his last report that I need a double blind tensilon test the double blind is cause he knows that they will tend to interpret a positive test in some dismissive way as they did in neuro-optho and it wont help me. I love this guy and he is a senior doc and is the director of the pulm lab. You would think that would get me diagnosed.

Annie59

hope your doing okay and as everyone says go to the hospital i even with mg and on meds 15 yrs ago tryed to ride it out NOPE CANT its not a surf board on the water to ride out the wave its our breathing and it needs help ASAP. and when i was first dx i could not breath well at bed time so doc put me on mestinon timespan- time released, aww breathing was better....