Brainstem involvement late in course of MS

  : 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

  Thank you, Barb. It was very kind of you to take the time to respond to my question
  and lend your support. The swallowing problems are, as you know, frightening because
  of the constant fear of choking. The cause of the hiccoughs remains a mystery to me, mostly
  occurring when I eat so that it's rare I get to eat in peace.
  At any rate, you've made me feel a bit easier about all this, and hopefully the doctor will
  post a reply putting me at even greater ease. Thanks!
=
Sorry about the late reply.
MS lesions can strike anywhere in the central nervous system where there is white matter (myelin-coated bundles of fibers). One could suppose the very first lesion could be anywhere, including the brainstem. Although brainstem involvement can be serious because there are so many functions there, it is not necessarily true that brainstem involvement represents advanced disease or a switch to a chronic progressive form.
Problems that can happen as a result of brainstem involvement: facial paralysis, spastic paresis (hemi- or para-), imbalance, ataxia, double vision, difficulty swallowing or with speech, hiccups, etc. You can see how your symptoms correlate.
One comment: your neurologist mentioned pseudo-bulbar symptoms. That is worth explanation. "Bulbar" refers to signs or symptoms arising from the lower brainstem. Typically we refer to trouble with speech or swallowing. Certain clusters of cell bodies in the brainstem control the muscles involved in these behaviors. If these are damaged directly, you have bulbar symptoms. If, on the other hand, the connections from the higher centers (cerebral cortex) is damaged, then symptoms can look like they are from the brainstem but in fact represent disease elsewhere in the CNS. This is "pseudo-bulbar." We see this in diseases such as MS, strokes, and certain degenerative diseases.
I hope this helps. If you still have questions, feel free to re-post, probably best to do a fresh post rather than a follow-up to this one, as it will get lost in the shuffle. CCF MD mdf.