I'm 33. I have just been released from the hospital with a diagnosis of MS. I can't feel the floor under my feet, which leads to balance issues, but then, I was clumsy to begin with. :) I also can't feel my lady bits as well as I used to, making it harder to have a fulfilling sex life. I'm telling the world that I am "rolling with the punches," but really, I'm wondering what the heck am I going to do? It's affecting both my legs: am I going to be able to walk in 5 years? In 2 years? What if I can't keep working? What if my partner leaves me? I vacillate between wanting to tell everybody I know and tell nobody at all, including family. I watched my aunt die of the disease, so the family is going to go to the worst possible scenario when they hear the news.
But there are good things: I have an appointment to see an MS specialist at John's Hopkins to look at treatment options and begin to move forward, and I'm going to get PT and work out with a personal trainer three times a week. My partner and I have rededicated ourselves to getting healthier overall as a result of the diagnosis. And we aren't going to stop doing the things we love, like an upcoming trip to the Southwest to raft the Grand Canyon.
But this ***** is scary. I'm scared. I don't know what to do with myself. Anybody have any suggestions?
First off, an MS specialist from John Hopkins is a great start! My MS specialist, after looking at my background and MRIs stated right off, "OK, how are WE going to fight this?!"
Write down all your questions (we tend to forget a lot), then take down all the information the doctor gives you regarding treatments / therapies. With your doctor helping you on the meds side, start reading and learning.
My biggest help was the MS therapy group I joined in the Northeast. I was the pup of the group at 45, but the other members had a wealth of info to offer and great knowledge too. This website can offer a lot of info too.
A parent of mine had MS before there were treatments, many many years ago. It's a very personal decision to who you tell. Some close friends felt they knew something was up, others were dumbfounded, and some I felt like I had to talk down from the ledge.
Just remember, there are a lot of us with MS out there, more than one would think (unfortunately), but together we are strong, and you are not alone. Be strong and stay positive.
This is an interesting club to join. The reality is that none of us know what will happen. But that is not so different than anyone's life. Find out everything you can, ask many questions of your medical provider, and make decisions you can live with.
Symptoms will come and go. That clumsiness you speak of may have been an unrecognized early symptom. Or maybe not. I suggest keeping a health journal so that you can answer your doctor's questions with certainty. It is important to remember that having a diagnosis of MS does not make you immune to other problems, so take good care of yourself and keep up your preventive care.
In any life changes will happen. MS is a bump in the road that you will learn to deal with. The first couple of years are the scariest.
Go rafting! Do all the things you love to do. If your MS progresses, you will have lots of grand memories. If you are fortunate to have a more benign case, you will have lots of years to do lots of things. Either way, you will have no regrets because you put things off and no longer have the ability to do them.
I have good days and better days. I wish you the same.
I have a veryi bad problem with balance which increases my being uneasiness and feeling scared. I want to try to go back to doing the activities that I used to enjoy, but also try new things before I get worse. I guess people call that their "bucket list." My husband no longer wants to be with me because of my having MS and I wonder how I can do other things to create new memories. But your cheerful and optimistic manner has made an impact and effect on me for which I am thankful.
I was misdiagnosed about a couple of years ago. When I heard the news that I had MS, I was furious and extremely upset. There goes all my plans, my future, being able to walk, go to work. I can't feel my legs, so there goes my balance, and walking was such a big part of my life, as well as enjoying all sorts of physical activities. I am very frustrated and worry that my husband will not want to continue living with me, that I am a burden. I really haven't figured out what to do myself so I'm scared too.
kel, I am sorry your voyage is on the ship with us, it seems to always sail the roughest seas. We have so carefully planned our trip, but the waves keep getting in the way of our original planned design. We have though, found other things to keep us amused so the trip will not become a waste. Learning something new, trying something different and generally forgetting about our last achievements gives us the opportunity to embark on new vistas of sunshine to warm our days. We celebrate what we 'use to be able to do' and our courage to try something new. welome aboard. maria