Any people out there with Multiple Sclerosis?

Question

I am having a really hard time dealing with my recent diagnosis of MS. Did you have a difficult time when you were diagnosed? I have cried every day for two weeks. I am afraid of the shots they want to give me. Avonex I think. Do they make you sick?

Answer 1

Hi - I am 26 and was diagnosed just about a year ago. It is a rough road - lots of 'what if' situations that creep into your mind, and lots of 'my life is over' feelings too. I went through the same things. I was put on an anti-depressant after 3 months or so, and that seems to have helped - it let's you roll with the punches a little more.

I too, was terrified of the shots. I am on Rebif (3x per week, smaller needle than Avonex) and it is not nearly as bad as I thought it was going to be. The liquid does sting when injected, and the injection site stays red for a couple of weeks after the shot, but I did not experience many of the flu-like symptoms you hear so much about with the interferons. I have heard that Avonex gives some more of those symptoms (since you get the whole dose I get in one week in one day), but they also say it's nothing a little Advil can't cure. Just do it right before bedtime and you will sleep most of the symptoms off. The biggest change I have noticed is that I don't have nearly as much energy as I used to. I am a type-A personality, and it is tough for me to slow down and rest - but I have learned to take it easy.

I know you might not believe me, but you will feel better. You'll see that your life will kinda be the same it has always been - just with a little MonSter following you around. I still think about all those bad things, but not too often, and I definitely don't dwell on them.

Almost every news story I see about MS is about how close they thing they are to curing it - I can't wait! One of the things that helped me was to get involved in your local MS Walk. I was amazed at the amount of money my friends and family donated to the MS Society - and it really did create lots of warm and fuzzy feelings knowing that you are helping to find a cure. Hang in there...you're life will get back to what you have known soon.

Answer 2

I do not have MS but my son was diagnosed a year ago. He is dealing with it very well - better than I but that is just part of being a mom. A very positive attitude is essential. Lots and lots of people have MS and live a very normal life for a full and normal lifetime. My son takes the Avonex shots. He gives them to himself once a week. The first month he felt a little ill the next day but that quickly passed and now he has no problems from the shots. He recently had a full checkup and was told that the MS has not progressed any at all which means the shots are keeping the disease under control and there have been no new outbreaks. Like I said, a positive attitude is important. Try to think this way if you can. Being scared is normal. Until there is a cure for MS you are on the best treatment possible. Keep your chin up and read all you can on the internet about MS. There is a lot of informatin out there. Also if you should have a problem paying for Avonex go on Montel Williams(who also has had MS for many years) website. There is financial aid for you. Good luck.

Answer 3

Welcome to my world! My diagnosis of MS was a relief. I had been told for years that it was my imagination, I was faking it, trying to get attention, it was all in my head, etc. When I finally got a diagnosis is was glad!!

People take the diagnosis however they take it. No matter what, it's NORMAL. It's not the end of the world. I've had it for 20+ years. Mine's a bad case. I'm a quadriplegic (both legs and arms are affected) I use a power wheelchair. My life is great and I enjoy it. There are challenges and tears, but so many joys and triumphs, too.

I dance (in my chair) when I can and relive the dance when I can't. I have a wonderful family, great friends, awesome church family who give my life meaning & 2 hilarious cats who make me laugh even when all I want to do is cry. I cannot work, so I volunteer whenever and wherever I can.

I was lucky and got my MS at an unusually early age (13, but diagnosed at 19) so I got used to it. I didn't really have to adapt.

You will find many people who will not understand what you are going through and some will not care, but I guarantee you'll find a lot more who will at least try. Many people have been unbelievably kind to me and I've made many friends.

You have MS, don't let it have you. Keep a positive attitude and cry when you must. The tears will stop and your will be happy again.

I joke about the MS and I find that it helps people realize that they can laugh and be happy around me, too. That resolves the discomfort that people sometimes feel when being around a very disabled person.

I hope I have given you some comfort and that you will soon feel the sun shining on you. If I can help, please let me know.

Answer 4

I have MS, and let me tell you, what you're feeling right now is perfectly normal. I was in a funk for about a month before I recovered. You do go through all the emotions that anyone faced with a chronic illness would: fear, anxiety, anger, potential loss of future health, etc. But with a good support group (friends, families, etc) and a good understanding of what you're going through, you will learn that you'll be just fine.

First of all, MS is not fatal. Secondary symptoms can sometimes lead to death, but this occurs in less than 5% of MS patients. For most people with MS, they go on to lead a full life.

The medications are scary, because all of them (except for Copaxone) can cause flu-like symptoms. This will happen for approximately the first six months or so on the medicine, but your body will adjust, and it will get easier.

Another thing you should seriously look into now is getting into a support group in your local community. Contact your local chapter of the National Multiple Sclerosis Society (http://www.nmss.org) and get into a group. Talk to other people who have the disease, as well as healthcare providers and doctors, nutritionists and specialists. It will help a lot. Their website is a wealth of information on the disease as well; take some time to read it.

And as always, if you ever need anyone to talk to, we are here (those of us on Y!Answers with MS), and you can always e-mail me directly as well.

Hang in there, and good luck!

CJ

Answer 5

My mother had MS since I was about 12. She didnt take it very well. I took care of her for months as she recovered from an attack, but she didnt do very well afterwards, not because of her MS, but rather that she gave up hope.
This is a hard time in life for you, but there is always hope. You still can maintain a job and family. You can still do most of what you want to do. My English teacher had MS, but we never knew it until she told us. You can get through this. Just dont give up.

Answer 6

Check out the Face of MS (www.faceofms.org). You will find a lot of people with your fears there.