You just arrived home from the doctor’s office and you don’t remember a minute of the drive for you just received the devastating news that you have MS. You recall the doctor saying it was incurable and they don’t know how one gets it and no prognosis can be given as to how it will affect you personally long term.
You are shocked and have a million questions. But the doctor does not have time to go into all that except to say there are therapies one can try designed to help with MS and a lot of research is being done for MS. He hands you some reading material about MS and tells you to make another appointment with your questions. You get out to your car and just sob!
Now home you are reading what the doctor gave you and barely understand any of it and your mind racing in all directions and thinking No, No this can’t be, not this…. it just isn’t me, I refuse to go down this road! What about my dreams, my plans, my family, my goals and how will this affect me and what will be the cost? What do I do now and what help is there?
Now comes the positive part. You now know what you have and you can become proactive about it. Learn all you can about it and it will become quite clear there is a lot you can do to help yourself and you are not alone with it. The mere fact that are reading this site Health Care Journey could very well answer most of your questions and also directs you to other sites that you should also look into. Get to know people that have MS so they can tell you about their experiences and you can make new friends.
After you have gathered as much information as you can about MS then you can design your own plan on how you are going to deal with MS and what works for you. As time goes on medical things get better and technology advances so there IS hope!
Yes MS changes one’s life and yes it might be a tough road but just keep on going for life itself is not easy anyway. DON’T try to go down this road alone either, it doesn’t work! Above all remember there is A LOT of help available and all you have to do is seek and ask for it. Keep in mind that there is NO question or problem that you may have that that many before you have also had and there are answers.
I have had MS for at least 30 years but got the diagnosis about 24 years ago and life went on. At best it has been an interesting and helpful journey, may yours be even better.
The holidays are a stressful time for everyone so I wasn’t too surprised when my MS symptoms started to flare up a little bit. My balance which isn’t that great to start with had become so bad that I had started using my cane on occasion if I knew I was traveling a long distance or going somewhere that might present some tricky situations. I figured 2 weeks off for winter break was all that I would need to recharge and get back to “normal”.
Thanksgiving is my second favorite holiday behind the 4th of July, the only way to beat football and turkey is BBQ and baseball! This Thanksgiving was extra special as my wife and I were finally going to tell the rest of our family that we’re expecting our second child this spring. The stress of expecting the new baby was the beginning of my new symptoms.
I became extra spastic in my legs and now in my right arm too. Previously my MS has only affected my left side so a twitchy right shoulder got me worried; numb toes really got me worried! Along with newly tingly toes and extra wobbly balance my vision started to get shaky. Vision has never been an issue but I’m aware that many people with MS struggle with vision problems so this was just another stack of great news to go along with everything else.
Finally we sprung the news that we had another baby on the way and I was very relieved to finally be able to share the news with my family and friends. Thanksgiving was over and break was only a few short weeks away, I could make it. The Sunday after Thanksgiving I had my Tysabri infusion and actually didn’t mind spending 3 hours sitting in a chair because it meant that I would get a chance to unwind and relax.
Winter break finally arrived and just like every other teacher and student I was excited to finally get off of the grind for a little while and spend some time with my family. The first night of break we all went to Holiday Nights at Greenfield Village and had some fun, I was in such rough shape that my in laws went and got a wheelchair for me. I didn’t use the chair instead I pushed my son in his stroller all night and limped along through the 1860’s. Break was off to a not so spectacular start.
Christmas was fun I got to spend time with all of my out of town family and see all of my nieces and nephew. I ate too much food and relaxed as much as possible but the new symptoms were still present I was beginning to think that I might be in the middle of an exacerbation. Good thing my 6 month neuro checkup was the Tuesday after New Year’s.
Once I started explaining all of my new symptoms she asked how long had I been having them for, I explained that it had been going on since a little bit before Thanksgiving. She looked over the list and went to get the head neurologist who is my regular doctor anyway so I thought nothing of it until he walked in and started asking me the same questions I had just answered. “Do I think it’s PML, no but since you are JC positive let’s get some pictures to make sure and see if we can see any new activity.”
Christmas, family and a new baby are all stressful to a degree, a potentially fatal brain infection is in a class of it’s own. As I numbly drove back to work from my appointment I couldn’t stop thinking those three scary letters PML. When I got to work I got online and completely ruined my day by looking up the symptoms that went along with PML. The most prominent symptoms are clumsiness, progressive weakness, and sometimes personality changes according to Wikapedia. Check, check and check, my personality was quickly changing! I never let MS get me down but PML had just punched me in the face and I was sure I was going to die or have to endure some crazy treatment to hopefully save me.
My wife as always was my rock, “it’s going to be fine, get your MRI and we will go from there.” I have never looked forward to an MRI before but I couldn’t wait to lie in that stupid tube and listen to it honk, beep and thump while it scanned my brain and spine. After the scan was complete I got dressed and walked out the doors into the freezing cold sure that the results would confirm that there was an infection in my brain.
When I spoke to my Doctor he explained that he saw no signs of PML and that there were no new active lesions either. He thinks that the extreme cold weather and the stress of the new baby have teamed up to get my MS irritated. “We will monitor it closely and get steroids going if needed”. So the good news is my brain isn’t being eaten by PML just the usual lesions.
Be a warrior today,
A brand New Year with fresh ideas and time to take inventory of the last year, meaning too I still have MS and assorted other problems to deal with. I will make no resolutions about anything just because the date changed for that never worked for me. I have discovered that if I really want to change something I have to just DO IT!
At this point of my life with MS and age I have to take stock of what worked and what didn’t last year. I need to let go of some things and cultivate others. Believe it or not I was trying to ignore my MS too much like it wasn’t there and went too far with that. MS has its place in my life as much as I wish it didn’t! It’s like a bad situation...if you don’t deal with it, it does not get any better.
I know the areas in my life I need to work on for better emotional health which helps a lot with MS. I have many things I love and that give me wonderful peace and calmness. When I allow negativity and aggravation into my life my MS acts up no end and that’s bad! Last year reminded me just how much control I really have left in my life. SO here is to the New Year and the things I will practice that I learned from last year.
May your New Year hold a lot of happiness, Holly
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Important Safety Information
Before beginning treatment, you should discuss the potential benefits and risks associated with Rebif with your healthcare provider.
Rebif can cause serious side effects. Tell your healthcare provider right away if you have any of the symptoms listed below while taking Rebif.
Rebif will not cure your MS but may decrease the number of flare-ups of the disease and slow the occurrence of some of the physical disability that is common in people with MS.
Do not take Rebif if you are allergic to interferon beta, human albumin, or any of the ingredients in Rebif.
Before you take Rebif, tell your healthcare provider if you have or have had any of the following conditions:
Tell your healthcare provider about all medicines you take, including prescription and over-the-counter medicines, vitamins and herbal supplements.
The most common side effects of Rebif include:
Tell your healthcare provider if you have any side effect that bothers you or that does not go away.
These are not all the possible side effects of Rebif. For more information, ask your healthcare provider or pharmacist.
Call your doctor for medical advice about side effects.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.
Rebif is used to treat relapsing forms of MS to decrease the frequency of relapses and delay the occurrence of some of the physical disability that is common in people with MS.