new diagnosis of friend - please explain - Multiple Sclerosis Message Board

genster · 06-06-2006, 08:08 AM

Hello everyone
My friend (and second Mum) has just been diagnosed with MS (yesterday was her follow-up with the neuro doc after her tests), and the doctor told her she has the progressive type, for which she seems to think there are no treatments. I do not know enough about MS to be of any use to her, but this sounds odd to me.

What does it mean when the doc says progressive sort?
What can I do to help her?
Are there medications she can try?

She is scheduled to go for a spinal at the end of the month. She is in her 60's, will that affect the progression of the illness?

I guess I am wondering if anyone can give me some idea of what she can expect in terms of prognosis. I know it is a very individualized illness, but I am looking to paint with a very broad brush here, as I know next to nothing about this disease.
Any help would be appreciated. Thanks

lilc · 06-06-2006, 06:10 PM

genster, progressive MS is indeed the worst sort. Of the MS treatments currently available (in the US), none claims to benefit Progressive MS much. Betaseron seems to be the one most likely to be used in progressive cases.
There is also a course of chemotherapy (don't know which drug, sorry) that may offer some relief. Depending on your friend's general health it may be an option.
The bottom line, however, is that no one can predict the course of MS in any individual's life. She needn't give up.
What you can do is to support her. Accept what she tells you about how she feels - regardless of how she LOOKS. Ask her about it. Let her feel she can talk to you without fear of consequences. Don't overprotect, but don't assume she can still do all the things she's always done. Let her be as "normal" as she can be. Don't stop loving her.
Check back with us as often as you like.

duttin · 06-06-2006, 08:52 PM

Genster,

I was diagnosed with primary progressive MS,this disease is progressing slowly,with each attack it leaves a little disability behind and the symptoms don't completly go away.
I have chosen not to further drug treatment.I take meds for chronic spacticity,pain and acid reflux.Basically treat the symptoms.
I have good days and bad and I do what I can.I have ask my family to give me a little space and let me live a normal life when I need help I'll ask.Having a support team helps ,just some one there to listen means alot.As far as a long term out look,no one knows .Her symptoms could level off and not cause anymore damage,only time can tell.
A spinal should not cause any side effects or progression of the ms.Have your friend drink plenty of water the day before the spinal and drink caffinated beverages afterward.It will help her.The worse thing about a spinal is a headache afterwards.Have her lay flat for a while.You are being a good friend to her.Keep us posted.

genster · 06-07-2006, 05:21 AM

Nuffs and Lilc, thanks for your responses.
My friend has been taking things ok for the most part. She is pretty strong. She had cancer about 20 years ago, was back at work within 3 weeks of surgery. Some days she is very tired, some days she is fine. She had a bout of depression right after the diagnosis, but seems to have rallied. Now she is just disgusted at the waiting for the tests and the results. I think she just wants to get on with things, do what needs to be done to treat this. She can be very impatient!

I have been reading up on MS online trying to get info, but decided that this forum was as useful to me as anything. Again, thanks for your input. I will keep posting with any other questions.

whoevea · 06-07-2006, 06:30 PM

can a doctor tell you that u wont be able to walk months from now because of it?