New and scared of the forums

Hellooo, so I’ve been recently diagnosed with RRMS as of a month ago but we’ve basically known it was going to be MS after the double vision presented last year, were just waiting for a second ‘incident’ to officially label it as such. To date, double vision is really the only symptom I’ve had and when I did relapse the double vision just got worse for a period of time but not really had any other symptoms. I have been very fortunate to get a quick diagnosis compared to some of the stories I’ve read about lurking on here. Reading other people’s stories are things I can’t stop doing as I want to know more about this thing that is happening to me but I also have such a big disconnect to other people’s stories on here that sometimes I feel like a fraud and others I just imagine myself in the life of someone else and really freak myself out. I don’t know how to use these forums properly without getting freaked out. My ‘MS team’ (neuro and nurse) tell me that MS is a very individual disease and no two people have the same journey, they tell me that plenty of people get MS quite mild and if treatment is started early enough (like I have) that can affect the way the disease progresses too. So I know this and it probably adds to my feeling of helplessness as I’m the sort of person who wants to know how this is all going to go and plan.

I’ve probably not been coherent here and have gone back and forth a lot but I suppose the question I am asking and want to know is, what is the best way to use these forums? And what is the best way to deal with uncertain future freak-out? Is it terrible all the time?

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To comment on your last question, as with most things MS, it varies.
Sometimes scary, sometimes terrible but mostly just a new “normal”

Of course you need to adapt, listen to your body and make the most of the good stuff. Feeling like a fraud is pretty common until you realise we all have our own stuff to deal with.
As for using the forum, it is a good place to share and gather experiences with people who know what you are talking about.
All the best


You know what I am going to do you a HUGE FAVOUR. STAY OFF FORUMS FOR MS.

Yep dont go there. You are recently on the road; now EVERYONE has MS differently no two are the same, my journey will not be yours etc. You have a great chance of living a pretty long and normal life including having chldren, getting married, working.

IF you read all the so called HORROR stories it will do you more harm then good, most of the horror stories are very rare actually. i have friends who have had children, work and go on holidays, still mobile and do normal things.

equally I have friends who have had relapses but they are longer term MSERS.

The trick to survive this disease is to get to be friends with it, CARE FOR YOUR FRIEND, look after it. EAT WELL, SLEEP WELL, DONT SMOKE, OR GET SILLY WITH ALCOHOL (LOL), dont follow silly diets.

I take vitimin D EVERYDAY. I sleep at a regular time and mostly get 8 hours a night. I wake up in terrible pain at night but i am used to that. I am PPMS, take no drugs for my MS per se.

I have had it 22 years that i know of. I am still mobile to some degree. but hey i am 71 lol.

So eat well go mediterrean diet, lots of veg and fruit.

my one bit of advise is STOP READING ABOUT IT. NO ONE ELSES JOURNEY IS GOING TO BE YOURS. GO FREE OF READING UNTIL SAY JANUARY 2023, then after you have just DEALT with your diagnosis come back and let us know how your getting on.

I SAY ALL THIS WITH EXPERIENCE. I never had a forum when i started, never had facebook either, and just dealt with it.

BIG HUGS. its not that scary. what is scary to me is loosing so many friends over the last 5 years with cancer, and my husband who went suddenly.

WE are given one life; live it wisley but not in FEAR ok. xxxxxxxxxx


A bit late but I wanted to say thank you so much. I’ve found the forums useful especially when seeing if anyone else has the same problems with medication I take.

In the begining the MS staff at the hospital were pushing me to join forums I suppose so I wouldn’t feel alone. But as you can see from this post it had the opposite effect, having been completely new and not really identifying with anyone’s journeys all I could think was this is it, this is how it progresses. Having had this for a couple of years now and still not relating to those horror stories it doesn’t scare me the same way as I’ve gotten to know my body better and my MS better. Ironically, I’m probably more intune with my body than I’ve ever been before.

Anyway just wanted to say thank you for saying not what many people around me were saying.


its good your back and your still with us. WELL DONE. xxx

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Good to hear that you’ve got the Forums thing in proportion. You “own” the access to it and tap into it as you see fit.

Up to you how you handle your condition. Some like to go Ostrich, others go full technical. I think I’m more the latter - do lots of reading and research but helps me to have meaningful conversations with my MS team of Docs & Nurses and sometimes challenge them! I’ve even been on a clinical trial which was time consuming but another level of care and monitoring.

If you are genuinely interested in the current state of MS research and opinion on treatment options, sign up for Prof G’s MS Selfie. He’s a Professor of Neurology at Barts in London, a leading MS Researcher and also finds time to write /record articles & podcasts about life at the sharp end. I’ve found his theories invaluable when second guessing MS Doctors! I think it’s $99/yr but well worth it.

Hello there and welcome to this forum. I’m new on here myself and haven’t really used forums much throughout life… until now so I’m pretty much sympathetic with your thoughts.

I’d probably say that the best thing you can do is be kind to yourself and allow yourself to process everything. Going through diagnosis, and beginning of MS treatment is not easy at all and if anything it can add extra worries which is expected… I remember the “joys” of my MS worries when I started on this journey… couldn’t see any positives… everything seemed like the end of the world but with time comes acceptance and I have now learned to take every moment of every day with a pinch of salt thinking and hoping for the best.

That doesn’t always go by plan as you can imagine but I’m trying. Let me know how you’re getting on and sending you lots of blessings!