MS/ rebif

[kipper6984]

My girlfriend is a young, healthy, 38 year old that has just been diagnosed with MS. She is starting Rebif shots this week. How long do people live and what is the prognosis?  As an rn I understand people respond differently to all meds, and everyone's diagnosis is more challenging than others with many directions. Her 5 yo son has seizures and the neurologists are avidly working with him to get them under control. Double dose here. HELP?

[Lulu54]

Greetings, Kipper.  

there is not much to add to what Q has already said.  

We all make sacrifices and compromises in our relationships  - if the two of you find that common ground you will have a long and happy life together.

be well, Lulu

[Quixotic1]

Hi, Welcome, and may I say that your girlfriend has a wonderful friend in you.

First, you need to know that MS is NOT - I repeat NOT - a death sentence.  As I write this, people with MS have life-expectancies just a few years less than the normal population.  This is because the people who are elderly now with MS spent most of their life without any of the treatments we have now.  People who are being diagnosed now are expected to have the safe life expectancy as anyone else.  That's on average.  Yes, a small percentage of people with MS will have a more aggressive form that will set them up for other problems, like pneumonia, that might end their lives earlier.

Your girlfriend should expect to see her children grow up and to see her grandchildren grow as well (realizing it all depends on the age at which people have their kids, lol).

Most people with MS have a form called Relapsing Remitting, and I presume this is what your GF has because she is being treated with Rebif.  This means that from time to time she will have attacks of symptoms, some of which are nasty (weakness, pain, vision problems, dizziness) and some of which are merely aggravating (numbness, tingling, clumsiness).  Between those attacks most people improve or return to normal.

There are a few symptoms of MS that are really common and so much more severe that often other people don't understand.  One is fatigue.  This is not tiredness that you can push through and still get everything done.  This can be a bone-crushing fatigue unimagined by anybody else except possibly those with a severe case of Mono.  The fatigue can suddenly appear after what seems like very little exertion.  Please respect it.  It is real.

Another common symptom is heat-intolerance.  She may show a reaction to getting overheated (from a bath, hottub, fever, hot day, hot room, exercise, etc) with a sudden appearance of symptoms which generally go away after cooling down.  We are talking about a" fraction of a degree" of elevation in core temperature.  We are all to AVOID heat.

Also, it is common for people with MS to have periods of mental fogginess, forgetfulness, troyble finding the right word and such.  However, it is rare for this to become serious or for someone with MS to have pure dementia.  (Looking back at that sentence I will all poor speeling and fine motor control to the list also)

We certainly hope that your GF will respond to the Rebif and have few signs of her disease for a long time.  That is the best outcome.  Rebif, nor any of the other three firstline meds, are considered cures.  Rebif is an excellent med with a good reputation.  And therer are other meds that are coming along soon that will be in pill form, but it remains to be seen who will do best on those versus using the shots.

Now, the reality is that a good proportion of people with MS will need some aid for walking and other activities (like a cane or wheelchair) within about 20 to 25 years after diagnosis.  This percentage may be as high as 25% to 30%.  Others may need help earlier and some never at all.

I'm sorry to hear that her son is having problems with seizures.  But, you and she will get beyond all of this.

Final thing to take away - there is no reason at all to believe that you two might not have a full and long life together - interspersed with a few bumps in the road.  Heck, what else is new?

Good luck, and we invite both of you to join us for support, information and answers.

Quix, MD (with MS)