Just recently diagnosed with MS (Multiple Sclerosis).?
Its been about 5 months actually and I’ve been taking Avonex. I’ve been having CRAZY dreams about losing my vision. (it was diagnosed due to losing vision in my left eye, although i’ve gotten it back since then). I’m just now starting to realize how scared I really am ! I caught myself laying in bed last night telling myself that if I go blind, i would definatly try to die. I couldn’t live blind !!! I have two little kids (2 and 4) and a loving husband. (I’m 26 BTW). I never realized how scared I am until I started to analyze my dreams!
I’m not sure if this is a question or just me venting for a second…but i’m scared as hell! Help me !
Yeah, it often takes a while for a MS diagnosis to really sink in and it’s normal to be scared, angry and frustrated. Being told you have MS is hard and it can feel terribly unfair. Vent all you want, cry, feel pity for yourself, eat a bucket of ice-cream or two…work your way through it.
For me it helped to read loads of scientific articles about MS and speak to my neurologist about the disease. It made me realize that the majority of people with MS lead fulfilling lives and at the same time, it helped me fully understand what my life could look like if the worst came to the worst.
Also many people have found great comfort and help through various MS groups. It might be something for you.
To me positive attitude is everything. To focus on what you can do instead of what you cannot do. Not to worry about what MIGHT happen, because that’s the thing with MS, it’s a lot of "mights" and "maybes". I might get hit by a bus the next time I cross the road to go to the post office, but I’m not lying sleepless at night over it. The same with my MS.
The Avonex might also be giving you nightmares. I’ve been taking Avonex for 6 years now and it’s only recently that my weekly Avonex induced nightmare have started to become less frequent.
If it’s any comfort, optic neuritis is considered a mild MS symptom and studies have found that patients who start with the disease modifying drugs right at the onset of the disease generally tend to do much better than average and what is expected (I’m one of these).
It’s also extremely rare that people completely loose their eye-sight because of MS.
All the best to you.
First of all , Big Hugs !
I remember being scared when I was first diagnosed.I believe it’s the fear of the unknown..the fact is that with MS we just don’t know what tomorrow will bring..But hey I could get hit by a truck tomorrow too..I have come to the realization that life in general is very uncertain. I take things one day at a time and don’t sweat the small stuff.
The majority of us with MS lead very normal lives and the fact is you probably will too..I wont fib to ya..MS can be a pain in the butt..but all in all it just isn’t that bad.
I was a bit older than you when MS came along and now I’m 51. I have managed to raise 2 kids and now working on being an awesome Grandma. I work full time and lead an active life..I garden ,sew,exercise everyday and spend tons of time with my grand kids.Last year I learned how to ride a motorcycle .
As Far as the dreams go..When I started on Betaseron I had weird and disturbing dream for the first few months so it could just be part of getting used to the Avonex.
Stay active, watch your diet and get lots of exercise and most of all stay positive..
Hang in there and good luck !
I lost most vision in my left eye, and have not got it back yet. I can totally relate to how you are feeling. The good thing is, it is pretty rare to go completely blind from MS. People who have vision problems as their flair up, usually have it come in and out, and even switch eyes.
I think a MS support group would really help you out with this. You are not alone out there. I am hoping I will get my vision back soon, it drives me crazy. =) Good luck to you!