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Do we have any personal control over our M.S.?

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    Do we have any personal control over our M.S.?

    I have wanted to pose this question for awhile. My mother had a horrible course of M.S. and was no longer living by the age I am now, while I seem to still be passing at the You Look So good phase. Is this dumb luck, or did her example make me try (?) that much harder to stay in the fight? While Mom was practically a saint (religious, a virgin until she married, abstained from booze, drugs, cigarettes, etc.), I was...well, not a saint!

    Then you have Richard Pryor and Montel Willams. Could anybody believe they both had/have the same disease?

    Is it a matter of "I am ready for a cane, W/C, bed, etc." OR as crappified as I feel, I can still fight this thing for another minute, hour, day, month, year, etc.?"

    This is not, by any means, a judgmental post but an honest question seeking opinions of persons walking in the shoes of Multiple Sclerosis.

    Thank you in advance for your replies.
    Tawanda
    ___________________________________________
    Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

    #2
    I think the good thing is times have changed a lot w/ research w/ regards to MS and it's accessibility via the internet.

    Compared to 20+ years ago MS patients could only take the docs directions of how to maintain and care for ones self w/ ms but with the internet and all it's resources we can now investigate and approach neuros about alt medicines.

    Which also enhances our neuros knowledge of ms on trials, research, etc from around the world to better care for a patient.

    I couldn't imagine having ms w/out such a vast resource. As a ms patient I would be calling my neuro all the time about symptoms/flares but now I just visit MS World for help like the MS Grip of Death ... lol.

    Just my thoughts.

    PS and no one is perfect, I try to learn from my mistakes which I have great stories to tell my kids so they too can learn from them and not make the same mistakes I did.
    ~Brittan~ Over 15 years w/ symptoms & Recently diagnosed w/ Chiari 1 Malformation - it has a lot of similar symptoms to MS. Easy to dx by MRI. See videos CM info - how to dx via MRI: https://youtu.be/I0f9e3pU6to CM symptoms: https://youtu.be/YyF3HVgHpCs FB group: Chiari Is For Real

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      #3
      Tawanda,

      To the extent that we let it, MS CAN control our lives. We can control what MS does to us mentally & emotionally. Beyond that, I don't know how much we can control.
      Live simply. Love generously. Care deeply. Speak kindly.

      Comment


        #4
        I don't know if its possible to influence the ultimate outcome of MS but I do believe that we can influence the quality of life we have in spite of MS by the choices we make.

        To use the same example, Richard Pryor and Montel Williams had/have very different lifestyles. When Richard was the age Montel is now he had already had two heart attacks and bypass surgery and was in a wheelchair or scooter because of his MS. The heart problems most likely came from not eating well and from what we know now probably didn't help his MS. And there's no telling how much damage his brain already had from drugs and alcohol. Montel's history is pretty much the opposite and he's still getting around pretty well. I don't think that's just a coincidence. I think that eating and exercising properly has helped his quality of life.

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          #5
          I don't think you can change the course of the disease - like will it into remission or whatever - but I absolutely think that we can control how much we allow it to affect our lives.

          Like your mom, Tawanda. I'm sure tons of people are like, "well it's hard for me to get around so I'll stay in bed," and then it's a slippery slope.
          Aitch - Writer, historian, wondermom. First symptoms in my teens, DX'd in my twenties, disabled in my thirties. Still the luckiest girl in the world.

          Comment


            #6
            Great post, Tawanda. I agree with the other posters. Mostly, I feel that I am chasing a ghost. Or a leaf blowing in the wind. If you feel that you have figured out any type of system that holds the disease at 'bay', then you probably have the best that you can expect, until the 'cure' arrives on the scene. Good luck

            Comment


              #7
              I do not think we are able to control the course of our MS.

              While I agree that medications, technology and the global information set are helpful I don't think it really makes much difference in the long term picture. That said however I do think that living as healthy a lifestyle as possible surely can't hurt and might stave off this stinking thief of a disease for a bit longer.

              I feel that I have been blessed to have had such an easy go of it at this point compared to so many however I don't for one minute think it has anything to do with my will power and you definitely know it isn't my positive attitude, lol. I truly believe it can and may change in a hot second which terrifies me.

              In the meantime, as I have said a million times, I'm going to work as hard as I can and bank as much money as possible so I can be comfortable no matter what this miserable disease might do to me.
              He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
              Anonymous

              Comment


                #8
                Funnily enough, Jules A, the course of my MS did indeed change in literally a day.

                For ten or more years, all had been going quite nicely. (Yes, fatigue, numbness, ON, but nothing too bad.)

                Then one morning, I woke up and suddenly I was limping. No more benign 'nice' MS for me. That was five years ago.

                I hadn't taken up crack cocaine or anything. Same reasonably good diet, same drugs, same everything, just a brand sparkling new limp.

                The 'roids worked the first couple of times, but I'd have to be on the suckers permanently these days. It hasn't gone away; it's just slowly worse.

                I'm still limping, still working, but oooohhh most days I'd love to just stop and retire to my bed. Maybe that is will-power, or stubbornness, or the river in Egypt, but it doesn't change anything.

                I think maybe it might even make it worse, because I'm grimly determined to carry on 'as normal'.

                I'm afraid I'd collapse in a sobbing heap if I let myself think about just how effed up things really are.

                Comment


                  #9
                  I believe that control of MS is an illusion.

                  We might think we are "controlling" the disease with (insert method here)...could be diet, exercise, DMDs, or positive attitude. And if it makes you feel better to think so, then that's alright too.

                  But I'm like Think. I was doing good until I wasn't. Nothing changed in my lifestyle, and I had been doing well, convinced myself it was a mild course, until it wasn't. And still I am doing better than many others, so I can't complain, but I know I don't control it.

                  As far as not letting it control our reaction to it, or control our lives, there again, maybe that's possible, but put a lesion in the right (wrong) place and your emotions can be affected (pseudobulbar affect) or your cognition impaired.

                  I do believe in medications to control symptoms...if there is any control, thereinit lies . Maybe a DMD will halt your progression (or like Snoopy has often pointed out, maybe it's not the DMD, just the course of the relapsing/remitting part of the disease)...I don't know, but I did what my neuros recommended and stayed on a DMD until I was told they wouldn't be helpful anymore..

                  But without my Baclofen pump, or extra baclofen for my upper body spasticity, I'd be in much worse shape. I take other meds that help with other symptoms...thank goodness for meds for sensory symptoms, and meds to ease spasms. In that way, I do think I have some control of the symptoms effect on me.

                  Best approach for me at this point of my life is not to obsess about the MS or where it's leading, but to take one day at a time, and deal with what the disease dishes out on any given day. My husband often reminds me of this when I'm discouraged, and it used to irritate me but he's right, the disease has to be lived out, one day at a time.

                  Comment


                    #10
                    My Older Sister passed at the age of 52...but not from MS, but from a genetic condition. I am 50. So there are other conditions besides MS and many people walk different paths.

                    I too had benign MS for many years, when I was on this Board as KatieDidNot. I was very positive. MS was really just a minor inconvenience. Then it hit boom! It was like, "your time is now up!" Do not pass go and here is $200 to live off, because you can not work.

                    Having RRMS is like a yo-yo. I was told this by several specialists. A good rule of thumb for a benign course is if you go 10 years without a major flare, then it is very likely the disease is going to remain mild. I made it 8 years....

                    We can eat right, I did. We can exercise, I ran 5-7 miles every morning. We can have a positive attitude, butterflies and unicorns were flying out of every orifice of my body. But it still changed.

                    I am a HUGE advocate for the DMDs...huge advocate. I believe with RRMS they have made a big difference in the quality of life for some of the RRMSers. You have control over if you want to take the med or not. You have little control over the side effects and absolutely no control over if the med will work or not.

                    Do you have control over your emotions? Maybe. Alot of folks with MS have a lesion that just pops up in the right place and they end up feeling overwhelmed with simple things, or they easily cry (like Montel), or are subjected to depression or anxiety.

                    I just came out of a major flare relatively unscathed...a few bumps and bruises. But, due to another medical issue that has popped up that if it is indeed what we think it is and it goes untreated, I will be going on another journey. So my new neuro team will only allow me to go back on interferon as a DMD. So I had to make a very difficult decision last week and decide to not treat either condition and do symptom management only. If I did not have MS, then my decision would have been different. I am in a wait and see mode...it is a quality of life issue. And that I do have control over.

                    But I can say this. Yesterday is gone so forget about it. Tomorrow is uncertain, so don't worry about it. Today is what is important.

                    Everyone's journey with MS is different, but MS dictates which path you will follow.
                    Katie
                    "Yep, I have MS, and it does have Me!"
                    "My MS is a Journey for One."
                    Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

                    Comment


                      #11
                      Originally posted by KatieAgain View Post
                      A good rule of thumb for a benign course is if you go 10 years without a major flare, then it is very likely the disease is going to remain mild. I made it 8 years....
                      I don't believe in the 10 or even 20 years and it will remain mild line of thinking although I have heard it before. There are just too many like others have said who were mild until they weren't.

                      For a 20 year old who is newly diagnosed 20 years might sound like a long time but being disabled at 40 years old like many of us are is just horrific imo. No amount of positive thinking can make that picture appealing to me.

                      I wouldn't wish this disease on anyone.
                      He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                      Anonymous

                      Comment


                        #12
                        The trouble is, time passes, and those relatively benign years, be it 10 or 20 or more, come to an end, and there you are wondering how on earth this happened.

                        The other problem is that unless you are made of sterner stuff than me, you'll probably spend quite a bit of time during those relatively benign years worrying a little or a lot about what is to come.

                        I've never understood those "isn't it great, you'll be able to have a test soon and find out whether or not you're going to get dementia in 40 years time" news stories.

                        Yeah, no, just brilliant. Fair enough if there was any sort of cure or a decent treatment, but come on. How could you live a normal life knowing that was on the horizon?

                        Not unlike MS. I truly wish I'd never known. It's been there for 15 years now, and nothing is going to make it go away, or get any better.
                        I'm afraid trying to live as much as possible in denial is the best alternative I've come up with.

                        Hey ho. Could be worse.

                        Comment


                          #13
                          Originally posted by Thinkimjob View Post
                          The trouble is, time passes, and those relatively benign years, be it 10 or 20 or more, come to an end, and there you are wondering how on earth this happened.

                          The other problem is that unless you are made of sterner stuff than me, you'll probably spend quite a bit of time during those relatively benign years worrying a little or a lot about what is to come.

                          I've never understood those "isn't it great, you'll be able to have a test soon and find out whether or not you're going to get dementia in 40 years time" news stories.

                          Yeah, no, just brilliant. Fair enough if there was any sort of cure or a decent treatment, but come on. How could you live a normal life knowing that was on the horizon?

                          Not unlike MS. I truly wish I'd never known. It's been there for 15 years now, and nothing is going to make it go away, or get any better.
                          I'm afraid trying to live as much as possible in denial is the best alternative I've come up with.

                          Hey ho. Could be worse.
                          I am right there with you and Jules too. Same thing happened to me as I said above. Several years go by, then BOOM!

                          I think the 10 year thing is a "guideline" for Neuros.

                          I had lunch with a fellow MSer who has had only one flare in 27 years. I was so jealous. But there are people out there that really do continue with the relatively benign path.

                          And then there are those who don't get to even enjoy a few years of benign MS. Their BOOM comes within months. My friend was like that and we were diagnosed 3 days apart. Three days. We went to the following years MS Walk and I ran the 5K and he was in his wheelchair. How sad is that?

                          I still think that MS in total is more than just one disease. There is something the researchers are missing.

                          Even I am not doing well health wise, I would like to try and put a positive spin on this. I truly believe with all my heart, that the MS of the future will be a mere inconvenience, and that is for all types. I really do. The young ones out there, teens, twenties, and thirties are going to see and experience a different journey than what we are. I truly believe that.
                          Katie
                          "Yep, I have MS, and it does have Me!"
                          "My MS is a Journey for One."
                          Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

                          Comment


                            #14
                            Why put this kind of burden on yourself? You didn't cause your MS. If MS sucker punches you someday, it won't be your fault.

                            Comment


                              #15
                              Originally posted by MMMMS View Post
                              Why put this kind of burden on yourself? You didn't cause your MS. If MS sucker punches you someday, it won't be your fault.
                              I might be missing something, wouldn't be the first time but I don't recall reading where anyone is blaming themselves for having this miserable disease or the course it takes. For me, like others have written, it is haunting but I definitely don't hold any guilt or responsibility into my faulty genetics or the unknown course it will take.

                              KatieAgain and Thinkimjob, I am kind of glad I found out I have MS because I really have been able to make major changes that will be helpful when things hit the crapper so I'm ok that denial isn't an option for me.
                              He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                              Anonymous

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