I've been checking into this site for the last 6 months. I thought it was finally time to introduce myself. My name is Kelly. I was officially dx with MS in Sept.2009...my first attack was April 2009, but looking back over the last couple of years there were a few signs that I never put together!! I started on Rebif in Oct. and have been doing pretty good on it. I take my Aleve about 45 min. before my shot and have only had 2 nights when I got the chills about 3 hours after injection. I have to admit one of those times I didn't take the aleve (testing my body to see what it would do) and definitely had a bad case of the chills. Thanks Nikki for your advice on the Aleve!! I am drawn to your posts because you seem like you have done your research over the years and you always seem very positive. Being positive is what I struggle with right now...I started out with numbness in my face and left arm in April. Dr. thought I had pinch nerve in my neck...MRI of my cervical spine was ok, so they wanted to check my brain which revealed lesions. I also have the twitching throughout my body. During the spring/summer I was having some muscle pain on my right calf and right shoulder area which has gone away. My left arm isn't numb like it used to be but my face is still numb. Of course at this early stage I fear that "what if I don't have the relapsing/remitting form of this disease" and it is a worse form...I struggle with this on a daily basis. I have what I guess is normal for MSers...one day dizzy--next day fine; couple days my leg will feel weird then it's fine----but during all this I have myself scared to death that I'm "getting worse." Anyway I have a very supportive husband and great kids, which I am so thankful for!! Sorry for the long post...K
I think what you are fearing and feeling right now is probably what most of us go thru after we are diagnosed. I was diagnosed Oct 1, 2007 and have been on Copaxone for 2 years this month. I remember my Neurologist telling me that from diagnosis on, I will most likely always have fears about every little twitch or sensation being MS related- but he said that 1 year to 18 months into it, I will be used to having a chronic illness and that I will learn to go on with my life and not continuously worry and dwell on it. What he said has been the case for me and my wife. He also said that MS is a marathon and not a sprint and that I should pace myself-meaning- don't get excited and worked up about every little thing. I have a great Neuro who is very understanding and informative-but doesn't get excited easily. This has helped me as well as calming my wifes fears. This forum has also helped answer many questions and I find it comforting to know that others are going thru similar things. Try to educate yourself, take care of yourself, follow Dr's recommendations, eat right and exercise, learn to cope with stress and avoid it if possible- and go on with life. Don't let your MS run your life. I remember someone on this forum saying that you are the same person that you were before your MS diagnosis. Give yourself time to adjust to your new normal. Best of luck to you.
Hi Teeth!!! Hey its nice to know someone is reading my words and paying attention.....not only did I tell you about the Aleve, but I also said what sodapopper said about "youre not any different NOW then you were the day before you found out you had MS'. And, its true.
I think soda gave you excellent feedback. Hes right. It takes a good year to start coping with realizing you have a chronic illness. Having a good neuro is key- because your doctor will become an important person in your life. Someone you can talk to and be honest with...although our spouses often are the ones who we unload on- they truly cannot understand what we deal with on a day to day basis. Our doctors have heard it all, seen it all and have learned how to help us deal with our issues...so I do hope that you like your Neurologist as much as I like mine. Also, developing a relationship with his nurse is a great idea. Often, we get to talk to the nurse, even over the phone, to run things past her and she will talk to the doctor on our behalf and go to bat for us....its the nurse youll be talking to about med refills and additional things we need...so, get to know your doctors nurse!!
As for being on the Rebif since October....as you already know, Im a huge fan of Rebif and this is right about the time when you should start to see some improvement with your fatigue and energy level. IT takes a full 6 months from when you hit the 44mcgs of Rebif for it to really start to work, as far as whether or not its keeping things from progressing...however, in the first 6 months, alot of my energy came back and I started to feel more in control. Heres another famous nikki saying "by taking a med, you are controlling your MS and not allowing it to control you". I really believe that. We MSers, dont have alot of control in our lives...we have to live with the fatigue, the pain and the often unexplainable symtoms....but by injecting that drug- you are doing the ONLY thing that the FDA agrees will slow down the progression and hopefully stop new symtoms and lesions from happening. ITs not a guarantee, but heck, in my world, I will do ANYTHING to keep this from taking over my life!! Yes, I stay positive. But honey, I wasnt always like that. And, yes, I went thru a year of being scared to death and freaking out. I havent forgotten what its like to be newly diagnosed, just learning to do shots and afraid of the unknown. Sometimes, I still "relapse" into thinking that way...my husband calls it my pity party nights.....but I allow myself once in awhile to be mad at the world...to wonder "why me" and to hate having to do shots...but then I look at the bigger picture- the people who are dying from their diseases and the incurable diseses which stop you in your tracks ...and Im grateful for what I deal with...in the grand scheme of things, MS isnt so bad.
How did I get to be this way? I stay focused all the time. When I was first dx, I was getting my Bachelors, had just gotten married and had a middle of the road job. I also had 3 stepchildren to take care of...In the first 4 months of learning how to say "I have MS' and do shots (and deal with the side effects) I graduated, got a better job started my MBA- moved FORWARD. It wasnt always easy....but by staying focused on my schooling and career (and please, lets not forget, I was 37 years young) I managed to have things to take my mind off of my disease. I also joined a real life support group and found this board. The board helped me more then the support group. The people here literally kept me going when I was down and out. So use us. It wil help, I promise. By the way, fast forward 4 years. Ive gone thru 3 jobs, some as high level management, some as low level administration. Ive tried it all and eventually found my comfort zone being in mid level managment and still working in sales...but Im also doing my PhD right now. Im very excited about this latest project. I know Im pushing the envelope and even my Neuro thinks this might be "too much" but what the heck...one class at a time, one paper at a time..and boy do I have an excellent topic for my dissertation!! All centered around the journey from symtom to diagnosis....and beyond.
My point, is that you cannot let this disease rule your life. Youll have good days and bad days, and good months and lousy months....but youll learn to manage it. MS doesnt define who you are, or who you will become...only you can do that. So many famous people have MS and cope with it just like we do....so many people have MS and allow themselves to be dragged into depression. You have a choice. Make the right one and if you feel that you are being dragged under- its OK as long as you talk to your doctor about it. WIth chronic illnesses sometimes fear and anxiety can turn into depression. Its normal to be anxious and even alittle fearful...but if it turns into something you dont understand, time for alittle help from the doctor. So, stay tuned into your body and your mind....remember to eat right, exercise to whatever capacity you feel that you can handle. DO NOT OVER DO ANYTHING and ask all the questions you want.
Welcome to the board and Im so very glad that you introduced yourself and let us know you are here!
Big hugs new friend.
Thank you all for your positive messages. I feel like my mood swings with what symptoms are rearing their ugly head that day. I get into a funk on bad days and need to learn to deal with it in a better way. I try to remind myself that I'm wasting time and missing out on the fun in my life by being scared/worried and at times "why me". As with you Nikki, I try to put this disease in perspective and realize there are people suffering with a terminal illness. Count our blessings where we can!!! Gotta get the kids off to school--no delay--we only got a dusting of snow!! Enjoy your day everyone! TGIF
I know it well. Im from Philly and grew up all over PA!! Moved to Jersey when I married my "jersey boy". I actually am working from home today- all my meetings got cancelled, all my accounts are either closed or people are running late..it wonderful! Maybe today, ill get caught up on some much needed R & R.
Have a great day...