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…I don’t believe you ;)

My name is Kasia and I am from Poland. My MS was diagnosed.. 11 years ago (oh.. i didn’t realize so much time passed!). During this time I had only two episodes with dizziness (very strong dizziness going on through whole week). Besides these problems I feel great however my MRI result is getting worse and worse. I started interferon treatment 8 years ago. At the moment my doctor said there is no point in taking interferon still and he changed it to Copaxone (each day with injection? oh no… ;( ). In general he is confused I don’t have any clinical symptoms, it is quite strange for me as well becuse in MRI it looks like my MS is all the time active. Really terryfying.. one day everything will explode. ;/

I am rather an active person, I go to gym 3 times a week, i love swimming.. playing guitar (but I am not perfect guitarist). Lots of plans, some dreams to come true..Sometimes it is hard to believe that such serious diseadse affected me and some doctors are sure I have to take some drugs and I have to do injections and I should attenuate my immune system.

One question… if all of you are so sure? The question has bothered me these 11 years.. quite long, but I have never find satisfing answer. ;P

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  • chalknpens
    4 years ago

    Kasia, you sound very much like me. I have what a neurologist once called ‘benign’ MS … without symptoms for very long times, but with ongoing damage shown on MRIs. Benign MS symptoms are invisible: dizziness, loss of memories, organization, words, strength. You are as well as you are because of your exercise. You probably eat healthy as well. I felt guilty for years because I had no visible ‘needs,’and felt I was a fraud. But what you have is as real as those who need physical accommodations – which you and I may never need. What we need – patience and understanding from others – kindness and assistance in remembering what we have forgotten – it is so invisible and easy for others to forget about.

    Doctors and researchers themselves are not paying attention to the needs of patients with ‘benign’ MS. It is no wonder you feel unsure. They are unsure, and uninterested in solving the problems we face. We are the unrecognized people with ‘benign’ MS. But we are here, and have to feel that we count, too, and are worth investing in, too. You are doing everything that you can do for yourself. I admire you. I am in my sixties and it is harder to exercise. I do eat right. We have to do for ourselves, with support from the very few who truly know and care about us. It has to be enough. Be well, my friend, and I will, too.

  • chalknpens
    4 years ago

    Kasia, I stopped the daily injections almost four years ago, as they troubled me and had no apparent benefit for me. It is as true as it was when I stopped four years ago. I am no worse for doing without them. They slow relapses for some … for people like us who do not have rapid and frequent relapses, there is nothing the injections can do for us.

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