Mom's with MS

Hi S.,

As you may know, Montel Williams has this condition. He supports the MS Foundation. That would be a really good resource to contact to learn more about your condition. Hope this helps. Good luck. D.

I also have MS. MS is different for everyone who has it. Some people can go several years without a flare up, others have problems continuously. I have progressive MS meaning I have problems most of the time. I can't tell you what the course of the disease will be for you, because it will be unique to you.

I can tell you I have found certain things can trigger an MS attack for me, so I aviod them. Alchol sends me into a tailspin. I'm my best when I am following the Best Bet Diet for MS, getting plenty of rest, and exercising regularily.

All I can reccommend is that you read up on the disease - not just American sites, but Canadian and British as well. I have gotten some of the best information and advice from Canadian sites. I haven't spent a whole lot of time on the Austrailian sites.

Over time you will figure out your tiggers. Common triggers are heat, stress, and alchol. You may not have another flare up for 20 years or you could have them constantly. I can tell you that MS patients can expect to live close to an average lifespan. MS is a degenerative disease not a fatal disease.

I choose not to use medication. Others swear by it. I wouldn't get too discouraged by why you find out there. Only about 20-25% of MS patients end up in a wheelchair. I am not wheelchair bound or anywhere near it. Read up on the mental health and cognitive issues as well as the physical issues. I think they are harder to deal with.

If you feel you are becoming depressed, talk to your doctor about medication. Depression is a physiological issue for MS patients and easily treated. Dealing with the disease is a lot easier if you are not depressed.

I wish I could tell you there was some magic pill that would cure this. I can tell you the good news is in 50 years you'll still be dealing with this. And that's the bad news too.

You have a really positive attitude and that's good. Staying positive can really make a difference. There are a lot of MS support sites out there. You may find one of them useful. The MS Society has a lot of good information out there.

I know diagnois is scary. You will probably go through all the stages of grief. I have been diagnoised for over 10 years now, so I am well into the acceptance stage. I went through a long period of denial and anger though.

For me, it's become a daily grind not a roller coaster. I hope I don't sound too negative. Just give yourself some time to educate yourself on the disease and to deal with your feelings about having it. Take a deep breath and get some rest. Try to stay well rested. It helps.

Your life is going to be different from here on out, but not necessarily in all bad ways. You might not be able to do as much as you could before due to fatigue, but what you are able to do can mean so much more to you. One thing I have learned is to live in the moment and enjoy it for what it is.

Relax. You have a long time to deal with this. ((hugs))

Hello S.

I am a 31 year old first time mom of a beautiful 5 month old boy. I was diagnosed with Relapsing Remitting MS when I was 27. When I was 25 I started to notice things weren't right. I started taking Rebif right after my diagnosis. Within the next month I will be getting back on Rebif now that I have weaned by son (and my body!) from breast-feeding.

It is something that I definitely recommend. Side effects can be dealt with by taking your shots before bed. It is not something that helps you feel better today or controls your current exacerbations. The interferon betas are to control the progression of the disease so that you are better 20, 40, years from now than you would be if you did not take anything and the disease progressed uncontrolled.

There is no way to really tell when you are going to have a flare up. Sometimes you feel bad/weaker for a few days from being tired and that's it which is not necessarily a flare up. Getting sick, especially with a fever of any kind makes it worse.

Like Lenora said MS is unique to each person as each person's body is unique. I hope the best for you. You will definitely need to be strong. Managing your stress will be more important than ever. That's the biggest trigger.

MrsV

S.,

I was diagnosed with MS about 8 years ago. I've read alot of material and found that the symtoms and progression is different for almost everyone. The left side of my upper body went numb various times for several years. I had the spinal tap and various MRI's. I also had a horrible headache, I felt like my head was going to explode but that went away after several days of rest and drinking lots of fluids. The doctor's recommended injections but I chose not to take them because of the side affects. Today, I feel great! I haven't had a flare up for about three years.

A little about me:

I'm a 44 year old single parent of two teenagers (16 & 19).

Hi S.! My name is M. and I was also recently diagnosed with relapsing/remitting MS. I am 56 years old, which is older that the average person diagnosed with MS. Your age in much more common. My post spinal tap headache lasted 8 days, about average I am told. It did not hurt much when I was lying down, but who can lie down all the time? Caffeine seemed to ease it up somewhat. I really have no words for you about what to expect with MS as I am pretty much in the same place you are. My main complaint has been that my feet - both, but the right in particular - feels "swollen" all the time, and sometimes I feel like I have an Ace bandage wrapped real tight around my lower right leg. My lumnbar puncture gave a definite diagnosis of MS, according to my Newport News neurologist, however when I was sent to UVA in Charlottesville for a routine second opinion, the doctor there said that she is not so sure that I have MS and wants further testing done. Now I have to deal with all the referal stuff with my insurance. I truly believe that the local neuro is correct, but can not afford to just let and go and take shots for something I may not even have. On February 7th I started giving myself a Betaseron shot every other day and that has worked out fine. I will begin taking the full dose tomorrow. They have you build up to the full dose, taking 1/4 for two weeks, 1/2 for two weeks and 3/4 for two weeks. My neurologist left it completely up to me which medicine I wanted to go on and I chose Betaseron for a couple reasons: (1) it is the oldest and most studied of all the MS meds and (2) it does not have to be refrigerated. I know this has not answered any questions you have, but I just wanted to shart this with you and to let you know that you are not alone. Multiple sclerosis is a tough disease to diagnose so hang in there, as I keep telling myself to do.