How Long??

This topic contains 6 replies, has 4 voices, and was last updated by  Lelainia 6 years, 5 months ago.

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  • December 14, 2011 at 12:53 am #6470


    I am still in limboland. I had my first neurologist appointment last month and the said that my presentation is very likely MS. Now I wait for my 2nd MRI and I wake up everyday wondering if I am going to go numb again or worse. I hate unknown I work in accounting I like predicable.

    I know in the grand scheme of things this may be trivial but I quit smoking about 6 years ago gained 55lbs and it took me the last 4 year to lose 40lbs of that. A large part of my success can be attributed to the sports that I have started playing (Volleyball and Softball). So I am constantly asking myself how long will I be physically able to play?

    This thought depresses me because that is just the tip of the iceberg

    I guess what I’m curious about is when immobility strikes how does everyone stay active?

    Thanks for reading my fears :)

    December 14, 2011 at 4:29 pm #6941


    Hi MSBeans,

    I can see why you’re worried, but having MS does not automatically mean that you won’t be able to do any of the sports you’re doing right now. The progress of this illness is different with every person and until one or the other thing actually happens it’s kind of pointless to think about the what-if’s. I know, for someone who isn’t comfortable with the unpredictable and unknown, this is especially hard. But the more you’re worried that something will happen, the higher the chances are that it will. There are many people with MS who are active in sports and this is actually recommendet by neurologists, so go for it! And if something happens, THEN it is the time to worry about consequences and to take action.

    By the way: Don’t take your success in quitting smoking and loosing weight as a trivial thing! This shows that you’re able to fight for something and actually manage to achieve it! That’s just great and the right attitude to tackle your MS! Why letting this thing depress you when you can enjoy life to the fullest so that you won’t regret anything if something like the loss of mobility strikes you? And if it does, I’m sure you will find a way to manage instead of giving in to that damn disease(You didn’t just give in when you gained weight, right?)! But until then: Who knows what will happen? Even your neurologist doesn’t have a clue and sometimes this can be a good thing (I know this sounds weird to you). Life is full of unknown twists and turns! You never know if your plans work out in the end and having MS makes us even more aware of this than other people. In a weird way, this provides a certain degree of security for me: “I know that I know nothing” so to speak XD

    Anyway…I wish you all the best for your 2nd MRI and lot’s of fun with pursuing your sports!



    December 20, 2011 at 1:55 pm #6942


    One thing I’ve learned about living with MS is that the only thing you can be certain of is uncertainty. Even the doctors can’t say FOR SURE what path your disease pattern is going to take. It’s a highly personal disease.

    What I can tell you is that if you can use it as a wake up call, then you’re going to be further ahead. Whatever is on your life to-do list, GET BUSY crossing those things off. The nature of my MS is entirely spinal and I know it’s not a matter of IF I will end up in a wheelchair, but WHEN. This means that I need to do as much as I can for as long I can, while I still can. I don’t want to find myself regretting that I didn’t get to do things, ya know?

    And I think it’s wise to just take each day where things are relatively okay as a gift. Please don’t sit around waiting for the other shoe to drop.

    As for the numbness, I’ve had several times where it’s come and gone (in my legs) and then times when it hasn’t (in my arms & hands). As you can see, I am still typing and functioning despite these things. Mylein can repair and when it doesn’t, my body has made the adjustments. I believe that attitude is everything and ultimately, it’s the only things we have control over.

    December 21, 2011 at 8:36 pm #6943


    Thanks for the words of encouragement this is definitely the attitude I plan on taking right now. I have signed up to play beach and court volleyball 4 days a week I am excited and can’t wait to play. I hope that I can continue to keep positive. I have started my count down (72 more days)till my 2nd MRI which I hope will give me a diagnosis either way and if needed treatment options I am ready to discuss.

    This site is very helpful through this awkward time of uncertainty.

    December 24, 2011 at 2:40 pm #6944


    Good luck on the next round of tests and appointments! I think you have the right attitude for this! You didn’t give up quiting smoking because you were gaining weight, instead you adopted a healthy lifestyle and so have gained so much more! (fitness, health, weight loss, success, enjoyment…) I sound cliche at the moment but whatever!

    I have never had a doctor tell me not to exercise no matter how bad it gets. They do say to rest or sometimes they’ve told me to find some other type of exercise. I was a runner, and that only works when I’m in remission! I haven’t for a year now. I agree with others that their is no point in not doing what you want just because you might not be able to, or might not get the whole way through. If you want to do volleyball Do It! It will likely keep you better for longer, and Will keep your spirits up! Now that I can’t do things like that I am swimming more and have started yoga. You can always find things that work for you!

    Good Luck!

    April 7, 2013 at 10:44 pm #8871


    MS why are you so mysterious…

    I think I have been a little naive.  I didn’t have a lot in the way of symptoms in the last year so I thought I would go to my MRI results appointment and my neurologist would say there is no new activity, I’ll see you in a year.  I am sad to say this wasn’t the case 🙁 my MS is active so I had to make a difficult decision of treatment or no treatment.  After asking many questions and getting the recommendation from my doctor I decided to start treatment.

    I am in the process of starting  Rebif and wondering how my body will react.  Reactions are so varied with treatment I am hoping that I am one of the people that doesn’t get the bad side effects.  MS has again thrown me for a loop but I am hoping for the best and that this treatment will slow down the MS activity until there is a cure.

    April 10, 2013 at 6:36 pm #8896


    MSBeans, I want to encourage you about the MS drugs. First of all, if you start a drug and find the side effects are too much for you, you are NOT stuck. Having good communication with your doctor is important.  If a treatment is not working for you for whatever reason, do speak up. There are plenty of other options in terms of treatment and it’s important that you find something that allows you to live your life in the best way possible.

    When I started the drugs, I struggled with the first one. I only ever got to a maximum of half the dose and I couldn’t get out of bed. I am extremely drug sensitive. I went back to my neuro and talked to her about it and switched to another. The second one was a way better fit-no side effects for me.

    Good luck with your meds and be sure and let us know how you’re doing. Don’t be shy if you need some moral support. We’ve all be through this too!

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