Multiple Scerlosis... People who have it?

Question

I just wanted to hear from people with MS because I may have it. Would like to hear about your experiences, your daily life, and your physical and emotional well being. Either or all would be great :)

Answer 1

Hello,
I am a 49 yr old F that has had MS for many years.
First let me say remember there are lots of worse diseases than MS.I will be honest , there will be times when you are tested.But you can lead a full and normal life.
There are several types of the disease.Relapsing and remitting is the most common form.You can go for months and years with no debilitating symptoms.I would do some research on the most common MS drugs and get on one of them.They have really helped me.
Avonex
Betaseron (which I take)
Copaxone
Rebiff
all are inject-ables and have their own advantages and disadvantages.
I would be happy to chat with either of you one to one if you need some encouragement.
[e-mail]

Answer 2

hi kati
i'm pretty much in the same boat as you
the doctors arnt sure if it is MS but they're pretty confident. And although i have no idea how hard it is to actually have MS, i think being told you might have MS" is also very very scary.
For me, it all started last year late june - early july when i was 17. my right arms got tingly and felt a bit numb. Over the next few week my right leg also become numb and uncoordinated and i'd always be falling over for no reason.

I went to the doctors and they did a full blood panel but the said everything was ok, and since the symptoms had gone away after a few weeks, i thought it had just been a weird virus or something.

and it wasnt until the end of april this year where my hands were going numb, i'd have problems with speech (finding words) and swallowing, and i think even memory probs.

See the thing is, you could just be having an off-day where you're kind of not all there, you havent had enough sleep, or you'd forget something little and you're jumping to conclusions that its a !!SYMPTOM!! and not just simply forgetting.

so anyway i had my mri last week, and it was normal, and am scheduled for a lumbar puncture in a month.

in terms of emotional well being, im having a hard time getting any support at all from my family. i think that the possibility of my having MS is just too much for them to handle, and they've dealt with it by putting it down to me faking symptoms for attention. And they're not horrible people, i think its just beyond their coping threshold.

So right now i'm terrified. The possibility that i could have this horrible disease has made me view my mind and body as two separate entities; when you think about it, cos MS is autoimmune, my body, which tells me when im hungry, when im happy sad etc is eating itself. its working against me. It must sound strange, but thats how it feels.

So thank u for posting this question, it lets me know that im not alone in this, and neither are you katie. i hope that neither of us have it, but if we do, we'll deal with it just like us girls do everything else ;)
Good luck

xoxoxox

Answer 3

My mom had it most of her adult life. She had a progressive form of the disease that is probably at the very worst end of the spectrum. She experienced all sorts of odd things over her lifetime. In her case the symptoms began very subtly with nothing more than becoming easily fatigued from physical exertion, a slight loss of balance, and hands that never warmed up. This stage lasted about a decade. Then things started getting progressively worse. As the disease progressed, she began to have tingling and burning sensations in her arms and legs, which eventually caused extreme discomfort and pain. The neurologists kept telling my mom that MS patients don't have pain, so they never believed her (but she eventually went to a doctor that specialize in pain). The symptoms game and went periodically, but the overall trend was worsening over the next 20 years. The MS progressed to the point where her arms and legs were in constant spasm. She could not move her legs or feet, but retained enough use of her hands to feed herself and turn pages of a newspaper.

As for emotional well-being, I am perfectly healthy and I often wish I had the emotional outlook that my mom had. Even when she was mostly confined to bed, she actually seemed to enjoy each day and she kept a positive outlook on life. Depression is a common effect of MS, but my mom never showed any sign of discouragement or depression.