What Next?
 

I hope this is not seen as whining but I really need some advice today. After two weeks of plasmapheresis and prednisone now at 80MG every other day I was begining to feel better. I was stronger and my vision was clearing up. Yesterday things went down hill and I felt about the same as I did before my first treatment. I thought perhaps it was just a bad day but today is no better. I also thought perhaps it was a delayed reaction to my CT scan on Monday which I learned yesterday was normal.

As I said before my neuro wanted to wait on the mestinon but I am considering calling today and asking if he would consider starting it. I feel a bit short of breath when I move around a lot and chewing is now something that bothers me after a short time.

I know here I will get straight non sugar coated answers and I am prepared to hear what you people think my next step should be.

Your doctor needs to be aware of what's happening, especially in light of the shortness of breath (SOB). Give him a call, and if anything begins to worsen, go ahead and go to ER.

Good luck.

My personal experience as i digested, processed my diagnosis was that the overwhelming nature of it all and my personal emotional response made my sob worse (i think the effect of anxiety was not only a real physical effect but that that physical effect was maded much worse by my anxiety) once i saw medical tests that showed breathing was not as bad as i thought it was, then aftfer i have been able to manage My response.

That said, it was probably only becsuse of that initial anxiety exacerbated response That i got things going with treatment

reality is it is better to err on side of caution. Better safe thsn sorry, right?

MG has a "mind of its own". It can get better and worse. But, when treatment works there is an overall uphill course and when there is true worsening there is an overall down-hill one.

I know from my own experience that until I started to understand the crazy nature of this illness (and it took me a loooong time) the most dangerous times for me were when I did significantly better.

I now know that this always led (then) to rapidly over-doing it and rapidly crashing again.

I had PLEX, took me a day to recover, than did much better so went to do rounds all over the hospital. 5 days later- I fell while trying to walk from my office down the corridor, couldn't eat or drink and had breathing difficulties again. This was so unimaginably frustrating. And quite stupidly I couldn't see the connection between what I did a few days before to what has happened.
(and did the same idiotic mistake again and again and again).

The other side of the same coin is that physically resting almost always leads to significant improvement. It took me time to find the connection between those times in which I was a bit depressed and didn't want to do much to the improvement that followed after those "lazy" days.

Possibly, the fact that you don't take mestinon prevented you from overdoing much more.

As I said in another post, I find your neurologist's approach very interesting and quite smart. I have never heard of anyone doing this before. (in fact I think most will start with mestinon and only add other meds at a later stage).

So, as to your question: what to expect? I think it is too early to know. It is encouraging that you had some improvement and don't be too let down by some transient worsening. Try to take it easy and gradually increase your activity ( I think in another thread you mentioned planning to run. I wouldn't push that for now, even if you feel that you can).

Hope you do feel much better (and can even go back running) soon. But, give yourself as much time as is required.

Alice, as always thanks for your reply and candid answers. I did contact my Neurologist today and after discussing my symptoms and progress so far he agreed to let me start a low dose of mestinon with each meal. I can't tell you what that does is as when I went to pick up the RX my local Rite Aid had to order it as they did not stock it. I should be able to pick it up before lunch tomorrow.

I have never been a pill taker and for 55 years I only have taken tylenol or advil for headaches. I know have to keep a list of what to take when.