Re: Brainstem involvement late in course of MS

Posted By Barb  on July 26, 1998 at 22:47:00:

In Reply to: Brainstem involvement late in course of MS posted by Giselle on July 24, 1998 at 20:25:53:






Hello. I am 41 and was diagnosed with MS when 19. It has been of the RR variety.
Following minor surgery with general anesthesia a month ago, I immediately
experienced a severe exacerbation leaving me almost unable to walk. I was
given 5 days of IV Solumedrol followed by a month of tapering Prednisone, but
there has been no improvement in my symptoms; a few, in fact, have worsened.
Yesterday I was read a copy of my neuro's report to my PCP, and now I am
terribly frightened.
The report says that I suffer from spastic paraparesis, right-sided central
facial paralysis, pseudo-bulbar speech and nystagmus as a result of brainstem
involvement. I also have some trouble with swallowing and frequent hiccoughs,
for some strange reason. Prior to this exacerbation, I've never had brainstem
involvement before, but I've heard and read that brainstem involvement
constitutes advanced MS, that it doesn't respond well to treatment, and that
it tends to indicate that the individual has entered into a progressive form
of MS that isn't likely to reverse itself. Is this true in your opinion? Is
it possible that this may all clear up and I'll go back to where I was? Is
it also true that my breathing may be affected and that I may require a
respirator?
Please don't tell me that I need to see my neuro and ask him these questions,
for he has a tendency to hide things from me, and I need to know the answers
to these questions for my own peace of mind. Thank you for listening.
******************
Dear Giselle,
I'm not a doctor but I do have RR MS. I wouldn't worry too much about the brainstem
involvement because that's where some of my lesions were just about right in the beginning and I
recovered and am still walking (albeit w cane) and feeling pretty good. I've also had
slightly more serious involvement there causing breathing difficulties & swallowing probs
when hot, fatigued or in a flare-up. They were bad enough at one time that the docs were
seriously considering the possibility of Multi System Atrophy instead of MS in me. But they
eventually resolved themselves except a little bit during flareups.
Many of us with MS suffer from spastic paraparesis, facial paralysis, speech
probs, hiccoughs, and nystagmus without it becoming progressive or
life-threatening. I will remember you in my prayers that these symptoms will
fade away in you as they did with me.
I don't think brainstem involvement Always constitutes advanced or progressive MS and
hopefully the docs here will be able to tell you for sure. Good luck, good health and
most of all, God Bless.
Barb