Last reply 8 months ago
Hello everybody!

Hi there everyone! I am new to this community site but I sure am glad to have finally found a place to find people like me! I had been diagnosed with MS when I was 18 years old, initial episode being optic neuritis. I had recovered from it fairly quickly but had an MRI done showing brain lesions. I am 26 years old now and I have never received treatment and have never had another episode. I do feel a lot of fatigue and brain fog however. I consider myself very lucky to not have had a flare up in over 8 years. Nonetheless, there is a lot of anxiety and depression that is typical when having such an unpredictable disease, especially from a young age. Over the years there have been few changes in MRI scans but nothing too major. I wonder if any of you have refused treatment, and if so, what kind of things do you do to help manage the disease? I have often tried to explain the events of this disease and the importance of having new lesions to friends and loved ones, and I care about them a lot, but I find that they are very hard to talk to and not overly understanding (obviously not experiencing it to understand) but it would be nice to chat and meet new people!
Glad this website showed up on my feed!!

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michelledl
8 months ago

Hi,

I’m new to this site too, I was diagnosed with RR MS when I was 28. I have had a few relapses but luckily I’ve recovered fully from all of them. I didn’t want to go on any medication but I was finally convinced to do so over a year ago by my lovely MS nurse. Touch wood so far so good!! I read so many awful reviews about the side effects but I have not had one on tecfidera. My nurse just said to me that the known is that I might get these side effects if I take them but the unknown Is what will happen if I don’t take them.
I suffer from anxiety which came on in the last 2 years. I found this site and wrote a message about how I felt and got some great supportive messages back and I hope you do too.


vixen
8 months ago

Hello @aimzz and big welcome. Sounds like you are managing well and maybe that’s why it’s difficult for others to understand how you really feel underneath everything. There are lots of fold around your age on this site and of course, not everyone opts for treatment. I was only diagnosed a year ago and have learned the benefits of living healthy, always taking opportunities to avoid stress and to not push too hard.

This is a great site to dip into for support, questions and connecting with others. Sometimes, having the wealth of experience and advice on here can be a life-saver. Are you working? Nice to meet you, take care x


chrisb
8 months ago

I am new to this site also,I’ve had MS since 2016,I’m on Tecfidera also Michelle,only side effect I get is flushing to my face and arms,it looks like a bad sunburn,but only lasts like 5 minutes


grandma
8 months ago

Hi aimzz nice to meet you. You are one of the people that the NHS had in mind when 25 years ago their policy was not to tell people when they had an ‘exacerbation’ (lovely word wasn’t, it) because they felt it was unnecessary to give people a life sentence it nothing was going to happen for years, they didn’t tell me, had a very stressful job, a 14 year old daughter, long hours etc., had relapse on train to work, ended up in hospital miles from hone so visiting was a pain for family and it was 3 months from first relapse but if they had told me I would have made changes straight away, got fired went through hell for 6 months. Policy has changed since then thank goodness. Trying to explain to people who aren’t going through it can be very difficult, don’t stress it’s not good for the ms, keep your chin up and go with your gut!😍


aimzz
8 months ago

These replies have been very nice, thanks friends!
I have heard about the drug tecfidera also, but this isnt something my neurologist even tried to get me on. Wonder why the offer of different drugs? Sometimes I feel like they try to push drugs a bit too much on me, and it seems almost for their own clinical trial benefits. I do understand that they have to do this to find the best fit. He tried to suggest that I take one of those immune supressing drugs, but I (on top of having MS) got diagnosed with Ankloysing Spondylitis, which has been more troublesome than the MS has ever been. But basically I cannot take a lot of the drugs because of having conflicting issues. There are two drugs available for people who have both, but they are still very new and don’t have any long term data to support it.
@grandma, I find it very interesting that they wouldnt tell you about it. In a way it could probably relieve a lot of anxiety, until something happens of course. I try my best not to live a stressful life, thank you for your response and I hope you keep your chin up too!

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