• Nicholas Brown became a registered member 8 months, 1 week ago

    • Hi Nicholas,

      Welcome to the MS forums.

      I like your the attitude you expressed in your profile. I’m retired after working, full-time, in the stressful news media until the end of 2012. Now, at age 70, I’m not climbing any mountains but I do a lot of writing about MS. Have you been using any DMTs to help hold your MS at bay?

      Ed

      • Yes, did 10 years on Avonex, then changed to Gilenya which seems to be working and so much better than stabbing oneself in the thigh once per week! The Avonex was okay but I injected on Thursday evening and had big side effects which only abated properly by Friday afternoon. The Gilenya had no noticeable side effects after a few months but I did have low energy at the start and took 18 months off. Not a good idea according to my consultant – I grew 3 more lesions during that period and had a big elapse which drove me back to the consultant to admit that he was right. Since then I have been a good boy and taken my pills 🙂
          • I was in the Phase III clinical trial for Avonex, so it was my first DMT. But I, too, developed needle fatigue and went from it to Tysabri and then Aubagio and finally Lemtrada. Now, 14 months post Round 2 my MS appears to be on hold and some symptoms are improving. At nearly 71 years old I expect I’ve now use the last of my DMTs.

            Ed

            • Wow, that’s a long list. I’m lucky in that for a long period I would return to par after each relapse. I got to a point where I was beginning to slip and went back to my consultant who said that in general they would reckon about 15 years between primary and secondary and that as I had done 27 could I please go onto the drugs now!! I’d really like to be drug free as, even though there are no side effects compared to Avonex, I still feel that I’m wading through porridge. I’m also very interested in gut health as a connection to MS. I had a very obvious demonstration when I got food poisoning in Peru. Almost immediately the MS symptoms exacerbated, nothing desperate: numb fingertips, vocal chords – reedy voice, and fatigue, but very clearly connected. It has taken a few weeks to settle down again. I’d like to know more but I think this area is still in its infancy.
                • It might be a long list but I’ve been living with MS for 39 years. I haven’t had a real exacerbation in decades, though I’ve slowly gone downhill to the point where I need a scooter to travel more than 200 feet, or so.

                  There have been a lot of articles about connections between gut bacteria and MS that you can search and find. Your illness in Peru is interesting. I was in Lima on a business trip several years ago. On my final night, in the hotel restaurant, I ordered some huge scallops. Not a wise idea. Fortunately, the nastiness held off until I got back home. It hit hard, but I didn’t notice any increase in MS symptoms.

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