A few weeks down the road from Diagnosis. Feeling a bit overwhelmed with information. Did others find they fell into any kind of rhythm with their MS or dare I say ‘comfort’ (if that makes sense.) Life feels a lot like living on the edge of the next relapse at the moment which I’m guessing is a common feeling when things are pretty active at diagnosis.
i never had a break and finally from 2000, in 2016 was diagnsoed with PPMS. it meant nothing to me just a label like i have on my clothes. it did however make me feel vidnicated that i wasnt going mad lol.
try not to read too much it can just confuse you. Look at the things that really affect you each day and learn more about them.
I wish i had RRMS as i have no idea how not having MS stuff everyday would feel like. Once i had the quiet of the storm, where it went quiet i call it the eye of the storm, it was sheer bliss, i could walk wasnt stiffed legged, no pain and felt great a few hours later i was back with walker and shuffle lol.
I dont think life will be the same just different.
Hey LRH, there is life after diagnosis. I’m 3yrs RRMS diagnosed and at the time my life fell apart. But… after the 5 stages of grief and 3 years on, life hasn’t changed much tbh. I’ve been relapse free, MRI’s all clear and i take a good medication twice a day with food, which isn’t a hardship. So life goes on. Certainly for me, MS seems to be more a worry of what if, as opposed to lived experiences. That said, every time I open my eyes I see the residual damage of 2 bouts of Optic Neuritis.
Yes, life can indeed become ‘life’ again.
Relapsing remitting MS is a strange thing to get used to. You do perhaps start out just waiting for the next relapse and worrying like mad about whether X is the start of a relapse or not.
I think we all have a cr@ppy time with whichever variety of MS we suffer. As CC said, with primary progressive, you tend to never get a break (maybe a tiny one - that must have felt nice, just for a short while ). But RRMS is horrible too.
You just never know when, where and how the next relapse will appear. Plus worry about ‘what if it’s a big bugger?’ And ‘what if I don’t get complete remission?’
The only good thing about RRMS is the potential offered by disease modifying drugs. They offer a lot of promise. Relapses could be fewer and less severe with a good DMD. Some of us have been unlucky and unable to take them due to side effects. For that reason, I’ve had pretty bad relapses and not always had remission. And some people get worse relapses than me.
But in the next few months / years things will settle down. I’m by no means suggesting that one must ‘accept’ MS. (Being an uninvited trespasser to your life and body doesn’t call for acceptance, in my opinion!) You’ll learn to coexist with it.
As CC said, many PPMSers do envy those with RR. The reason for that is clear. With RR, you have the chance to take DMDs with the opportunity to reduce relapses and permanent damage. Very few PPMSers have that chance.
You may choose the way forward as CC suggests, by not reading too much because it will confuse you. Or the method I used, to learn lots and gradually you lose the confusion and feel a tiny bit more in command of your body!
If you’ve not agreed on which DMD you’re going to take, have a look at https://mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid What’s important is the benefits (ie the potential relapse reduction rate) versus the costs (the possible side effects plus maybe the means of taking the drug).
The view as explained by Retrovirus is one which is pretty common. Feel lucky that you do have RRMS, life with PPMS can be bloody miserable. They tend to have less good times when symptoms aren’t charging through their system willy nilly (if that particular phrase is allowed!)
And keep talking to us on the forum.
Yes to all of the above. Yes, one finds something pretty like stability again, yes the ‘living on the edge’ feeling is strong at first and never goes but becomes in itself part of the scenery, yes RRMS often starts off being pretty darned active and in some cases (mine, for instance) stays that way. Maybe yours will and maybe it wont. But I would suggest that the best way of dealing with that risk is to get on an effective disease modifying treatment at the first opportunity. I am sorry about your dx.
Great post Sue.
Brilliant advice from Sue and Allison. The only thing I would add is take the best DMT you can get, hit it hard! the advances in medication for MS have come a long way since my diagnosis. It will be hard adjusting, it will take time, it’s hard not to think of those milestones and imagine how you will be, in the back of my mind I am still waiting for a major relapse or thinking I’m slowly moving to SPMS.
It took many years but I have adjusted to my new life and although I have MS I love my life, some days are really difficult but I have made a conscious decision to do the things that make me happy. I’ve learned to be kind to myself and focus on what I can do.
I’m sorry this has happened to you, you are not alone, this forum has some great advice and lovely people to talk to who understand what you are going through x
Thanks so much everyone. I want to post a much better reply than this but want you all to know I am reading everything you’re posting and it means so much to me right now.
I’m choosing a DMT at the moment so all the advice and links are helping my headspace a lot in trying to make a fairly rapid but necessary decision.