Quote:
Originally Posted by gooberoobu
So last night I started to get the same symptoms as I did last week that required me to stay in the hospital a few nights. The weakness, the swallowing difficulties, the SOB. So I went back to the ER. They gave me some solumedrol, and drew some blood. Long story shorter, they decided to ship me to the University where my neurologist is. I was willing, especially since I would finally be in the place where I could get proper treatment. So after a long ride, I was in the ER there.
My hopes was that they would start the plasma pheresis, what the doctor has been saying I need. So far he hasn't been able to get the insurance to approve it out patient, and had also considered just admitting me to get it started if i met criteria... which I think i definitely do by now....
Instead, they increased my mestinon to 90-120mg every 4-6 hours, and told me to come back on Thursday to see my neurologist and he would be doing an EMG...
I'm sooo confused. My last EMG came back normal, the neurologist was aware of it, and wanted to do the pheresis. Now he wants to do an EMG... for what, cruel and unusual punishment?
I don't get it.
|
How were you diagnosed?
I am asking this, because it is not yet common knowledge or fully accepted that patients with MG can have a normal SFEMG and no detectable antibodies. Some neurologists (in fact I believe it is still most of them) still think that a normal SFEMG in a weak muscle rules out MG as the cause of the weakness.
One of my neurologists was ready to accept that MG was the cause of my weakness as long as I had a relatively mild weakness when he did the EMG. But, paradoxically told me I was in remission (and not aware of it) when I had severe weakness with a normal SFEMG.
I felt as overwhelmed as you, when he said this to me. As, at that time I required respiratory support most of the time, required assistance in every daily activity. had severe swallowing difficulties etc.
This was the reason I gradually became an "MG expert" as I pretty much learned everything that was written about this illness, the way it is diagnosed and managed, in order to save my own life.
I do not know how much it can help you, but I can tell you after all the research I did that this "axiom" regarding the SFEMG is based on very poorly conducted studies. In fact, if you carefully read the literature you reach the conclusion that this test may be normal in a significant number of MG patients. In fact it is probably not much better than tossing a coin, in the seronegative group of patients. It definitely can not be used to "rule out" this diagnosis, regardless of the severity of the weakness of the muscle tested.
It took me an extremely long time (and only after I was no longer his patient) to convince one of the neurologists involved in my care, that it is possible to have MG with a normal SFEMG. So, I think that if your neurologists is one that believes in the "SFEMG" and your EMG will again be normal, you will not be able to do much about it, other than find another neurologist who is ready to accept this.
At the same time, I suggest that you try to get a referral to a pulmonologist who has a good understanding of neuromuscular disorders. In retrospect I can tell you that having pulmonologists involved in my care is what saved my life. I was very fortunate that I was initially diagnosed with "asthma", so had a very good pulmonologist taking care of me.
Like Annie said, you need a good respiratory evaluation and not just the bed-side tests they do on the ward, which can be very misleading in MG patients.
I hope some of this can help you.
Unfortunately, I know how overwhelming and frustrating this can be, but even though it is hard to see, there is a light at the end of this tunnel.
meanwhile try to give your muscles as much rest as possible, so that your condition doesn't deteriorate any further.
alice