@nicholas-brown
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Nicholas Brown replied to the topic How do you answer the question, “How do you feel?” in the forum Living With MS 4 weeks ago
I always say “fine” with a big grin – mostly because I am . If I’m not then I wouldn’t want to burden anyone or give them concern. There’s nothing they can do about it. I live a solo life so there’s really no option other than being “fine” It’s reflex after all these years.
I do have to remember not to do that when I’m with my MS consultant and…[Read more]
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Nicholas Brown posted an update 2 months ago
the trek I posted about previously was successful and I raised just under the £1000. target. I got back from Norway just as everything locked down for COVID. in the subsequent months i did a virtual 100k trek – Virtual Race to the Stones. Now I am on a virtual circuit of Iceland which is 1332kms. It will take me a while! The next fundraiser will…[Read more]
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stana granch and
Nicholas Brown are now friends 2 months ago
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Doreenda Smith Arthur and
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Nicholas Brown posted an update 11 months, 2 weeks ago
In March this year I will be starting another challenge for which I am raising funds for the MS Society UK. The challenge is a 5 day trek across ice fields in Norway, self supported. That means I’ll be pulling a pulk (sled) of 25kgs or more and camping out overnight in temperatures of around -10C. The trek is called The Huldreheimen Circuit. It’s…[Read more]
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Tammy and
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Nicholas Brown replied to the topic Newly Diagnosed – Advice welcomed. in the forum Living With MS 1 year, 3 months ago
Hey there
My reaction to Gilenya was that I found myself feeling as though I was “living in a cloud” – I just wasn’t as sharp as felt I should be. It wasn’t easy to describe, just that I felt somehow blunted. I talked to my consultant about it and he said the only real test to see how it was affecting me would be to come off the drug for 3…[Read more]
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Hi Nicholas,
I’m glad that you’ve been doing well on Gilenya. I’m surprised, however, that with more than 15 DMTs approved for use (I’m not sure of the exact number in the UK) your consultant didn’t suggest a different DMT. Was that ever considered after you first reported the “blunted” feeling?
Ed
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Nicholas Brown replied to the topic Newly Diagnosed – Advice welcomed. in the forum Living With MS 1 year, 3 months ago
Hey Jono
Just seen John’s reply on DMTs and would definitely reinforce getting yourself up to speed with the various DMTs. You should be pushing your consultant on why Copaxone vs other injectables like Avonex and Rebif. Look at the side effects and decide what you can live with. I was on Avonex for 10 years and had chosen to inject weekly rather…[Read more]
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I have to add that more and more neurologists are moving to the idea that it’s better to hit MS hard and fast by starting out with highly effective treatments such as Tysabri, Ocrevus and Lemtrada. I wrote a column about this back in January: https://multiplesclerosisnewstoday.com/2019/01/29/new-study-dmt-hit-hard-fast/
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Nicholas Brown replied to the topic Newly Diagnosed – Advice welcomed. in the forum Living With MS 1 year, 6 months ago
Hey Jono
Just a quick note to sympathise. It’s a shock when you get your first attacks and the resulting diagnosis. I’m another Brit and some 40plus years into the disease. I’m now 65 and still hiking ultra marathons and climbing mountains. There have been many attacks along the way impacting walking, sight, hearing, bladder and bowel, but I’m…[Read more]
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Nicholas Brown replied to the topic Ibuprofen? in the forum Alternative Treatments 1 year, 7 months ago
I used it a lot before I went onto DMTs and found its anti inflammatory ability a help in taking the edge off symptoms. I still use it when I get an MS driven headache. The DMTs (I’m currently on Gilenya) have meant I now use it much less.
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Nicholas Brown posted a new activity comment 1 year, 7 months ago
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…-
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…[Read more]
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Nicholas Brown posted a new activity comment 1 year, 7 months ago
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…-
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
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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…
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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…[Read more]
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Nicholas Brown became a registered member 1 year, 7 months ago
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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
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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…
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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
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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…
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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…[Read more]
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Nicholas Brown's profile was updated 1 year, 7 months ago
