Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
I was diagnosed with MS just about 6 weeks ago. So I'm still new and freaked out by this.
I just have one question: How long do the episodes generally last? I haven't had any major problems (and that's why I was so shocked by the diagnosis), and the problems I do have seem to just come and go. Sometimes it lasts for hours, sometimes days. But does it get worse? Months? Years? I don't know what to expect, and my doctor won't give me a straight answer.
Can some of you maybe share your stories with me? I'd like to hear how it progressed for other people.
I'm only 28 and I always assumed I was fairly healthy...
I just have one question: How long do the episodes generally last? I haven't had any major problems (and that's why I was so shocked by the diagnosis), and the problems I do have seem to just come and go. Sometimes it lasts for hours, sometimes days. But does it get worse? Months? Years? I don't know what to expect, and my doctor won't give me a straight answer.
Can some of you maybe share your stories with me? I'd like to hear how it progressed for other people.
I'm only 28 and I always assumed I was fairly healthy...
The reason your doctor and none of us can give you answers to your questions is that MS is different for everyone. What one of us goes through, doesn't mean that another will.
Some symptoms stay, some go, some last for a while and go.. that's how it's been for me. I have Relapsing Remitting MS. So I have attacks lasting from a few weeks to months and recovery that is so far fairly complete. I've had times when I've had attacks every few months. Now my MS is more stable and haven't had a "real" attack for over a year. Some people go years and years without ever having one, some never have a remission and just a constant progression.
It is a progressive disease and there is no cure, but drugs can help slow the progression, as well as life style changes that help too.
It's a change of life, but not your entire life unless you let it be. Learn everything you can so that you can know what is happening with your MS.
Best wishes!
The main thing is that regardless of how long something lasts, you have to learn to not just "wait" for the next. Go about your business and keep the attitude that no matter what comes your way you will keep going. MS need not be more than some thing that gets in your way, but you have to determine how much in the way you will let it get. There are many options out there for ways to improve your life while living with MS, and you may not hear from your MS for a while.
So let us know what type you are dealing with, and we will be happy to give you lots of stories. We are here to help and support.
I was Dxed 6 years ago about your age with Progressive MS..I've been downhill more than uphill and rx's come and go like the wind..trouble is...I don't get a relief at all between. It's different for everyone and please don't get really scared, because many times it can be coped with ..you have to keep your head up no matter what. Luckily I have a wife that helps me in that respect.
Keep in mind that What I have is about as bad as this disease goes..not going for feel sorry, but wanted to let yo u know it doesn't always get this bad.. I know a few and one is even a great Lawyer:)..he has had MS for 13 yeras and he keeps on going every day.
I'm just very confused and scared at this point. At first when I was told I have MS, I thought it was some kind of a death sentence. The only person that I knew of that had it was a friend's wife who died 2 years ago at age 32.
Thank you for welcoming me. As of right now, I am not on any treatment because I want some time to get information about the side effects of medications.
Here's the other thing- I haven't told my husband yet =/ He's not exactly a "warm, friendly, and loving" man. When my doctor told me that I will need knee replacement surgery (I have a genetic condition call Patellar Tracking Disorder), he flipped out on me and said "Well who the hell is going to do the cooking and the cleaning and take care of Jonathan (our son) while you lay on the couch all crippled?? I certainly won't do it!" So, you can imagine why I won't dare tell him this until I have to.
So, with RRMS, the thing is it does just that...comes and goes. Hard to say anything for certain, but many people have flares with a little left over, and then go back somewhere near where they were. Hence the coming and then going.
I would just like to tell you that this is a disease that is really bothered by, and reacts badly to stress. It is a selfish disease, we are not selfish people, but we have a disease that takes a good sense of humor, and lots of patience. It is one that involves a rather easy going attitude because things just happen. This is a very important part of managing MS.
Have you been given treatment options? We have people who are taking most everything, so be sure to ask. Of course, you want to read the information, but we are willing and able to give you the real scoop.
Good luck with your surgery, and be sure to came back with any questions or thougths.
I'd like to respond to both of your posts, as they appear to each have their own urgency.
I do realize how frightened & confused you must feel right now, given your lack of experience with this disease. I was young too (24) when I was diagnosed with MS, but I had the "advantage?" of my Mother & extended family members with MS. I knew the symptoms well so I knew I had MS before I was "officially" diagnosed.
I was 7 weeks pregnant with my second child at the time. My symptoms began with numbness in my crotch! Within a few weeks the numbness spread from the bottoms of my feet up to my shoulders & up into my face. My entire body felt as if it was encased by lead & so moving was a struggle. My fatigue was horrendous & I had great difficulty lifting even a half gallon of milk. My sensory system was also affected. This all lasted for about 6 weeks & slowly improved, although I never completely returned to my "baseline" before the MS made it's appearance.
This was in 1981. I had my child & 2 years later, went on to give birth to my third & last child. Life was manageable for the next 13 years. During this time I went through a divorce. Then in 1994, I badly sprained my foot & after it healed, I was unable to walk unaided (due to balance problems) & then moved into what I was told is "Secondary Progressive MS". Yes, my entire life has been altered, but thankfully, I am still capable of walking (although with mobility aids)
I've been living with MS now for nearly 30 years. As you've read from others on this forum, no 2 people experience MS the same. Only the passing of time will reveal how MS will affect you, so try to not get caught up in the "what-if's" because they may never happen.
What I find disconcerting is what you said in your last post. MS (regardless of how it affects you) tests even the best relationships. The lack of compassion & caring can create a great deal of stress and stress is something that can make ANY situation worse, especially when dealing with a chronic illness.
I hope you have access to a good support system, be that family &/or friends. You have alot on your plate, but know that those on this forum are empathetic & caring people who will listen & help in anyway we can! {{{HUGS}}} to you!- Maggie