• Jono replied to the topic Newly Diagnosed – Advice welcomed. in the forum Living With MS 1 year, 11 months ago

    Good Day all,

    Again I appreciate all of the support and comments, and I apologise for not responding, its taken so long to get progress at the hospital, a change of consultant, more scans, lumber punctures, however I am finally at a stage, where I am now advised I qualify for DMD, they want to start me on Copaxone, and yet more MRI’s I understand as a baseline.

    Im anxious about the side effects, and i’m also anxious I get another infection in the winter that will have another impact on my partial mylenation. Im anxious about having to push a needle into my body/leg 3xtimes a week, is this for the rest of my life? – and keep asking the questions to myself, around will I inevitably end up in a wheelchair, walking stick, loss of speech. I google, I youtube, and I take some inspiration, but I also read scare stories……. in saying that, no one wants this, this is the path thats been chosen, and I just have to buckle down and get on with it.

    Since Feb I have also stopped exercising, put on weight, and anxious to play golf, play sports, run, in case I get another attack, I feel like its ground hog day, every time I wrestle these feelings/thoughts on a regular basis.

    Im not the person to convey feelings, but with this I and the more I write I can open up about my inner struggle, I am scared more than I ever have been in my life, and the impact it will have on my family, my aging parents, who have had their share of health issues themselves. and then I just break at the thought this will have on my darling daughter, who really is my world.

    Or I man up attack this, do as much as possible, my Dr advised I should look to change diet and remove red meat and dairy as they are inflammatory foods.

    Or I man up and take inspiration from my grandads favourite poem – If

    thank you for listening

    • Hi Jono,

      Thanks very much for letting us all know how things are going for you. I’m sorry that you’ve been having problems but I’m glad that you’re starting on a DMD. In my opinion, that’s the best thing you can do to try to reduce your flares and slow the progression of your MS. I was treated with Avonex, years ago, which also required self-injection. It wasn’t easy but it did help slow my MS so the injections were worth it.

      Have you talked with your doctor about your worries about Copaxone? There are many other DMTs. Some of them are pills. Some of them are infusions. About your diet…there are many different diets that are supposed to be beneficial to MS. I’ve never used any of them in the many years that I’ve had MS, but many people say they’re helpful. On the other hand, I try to exercise in the gym, riding a stationary bike and working with weights, twice a week.

      Good luck. Keep in touch. Keep thinking of your grandad’s poem.

      Ed

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