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Don't think I'm coping particularly well.....

Hi,

My other half has been negging me to join a forum as I have been ignoring my ‘benign MS’ diagnosis remarkably well for 2 years, then at Christmas developed pneumonia which triggeed a nasty relapse of MS. So I went from a benign diagnosis to regular treatment in the form of injections and a serious mobility issue, complete with the constant tears that comes with it! I don’t want to be pessimistic about this, and it would be so much easier if my walking would get back to normal. My latest MRI showed no new lesions on my brain, but a couple of lesions in the upper part of my spine, which google tells me is harder to recover from! Any tips on helpinng me get my head around this or what I can do to help my recovery??

K x

Sorry, I didn’t mean to post an anon!

K x

Hello and welcome :slight_smile:

If you haven’t already, I recommend that you post on the Everyday Living forum because there will be more people on there who will have had a similar experience and good advice. For now though…

I really dislike neuros who diagnose benign MS :frowning: That’s because it can only be diagnosed after the patient has been having relapses / symptoms for 10-15 years before they see him/her and, even then, MS often starts with only wee hints of what’s coming before showing itself properly and to count those years is a bit daft, in my opinion anyway. But that doesn’t help you so sorry for digressing.

It’s true that spinal lesions can be harder to recover from, but there are no absolutes with MS and many people with relapses involving spinal lesions make excellent recoveries. So, given that it’s still quite early days since Christmas too, you mustn’t give up hope that you will make a decent recovery from this relapse. I know it’s really hard to stay hopeful when everything’s so crap, but try to remember that you’ve recovered from things before and, although this one’s tougher for your body to fix and it’ll probably take longer, you might just recover from this one too.

Of course, we aren’t always lucky in recovery and we get left with all sorts of things. There’s no easy fix to deal with that mentally that I know of though :frowning: Each time takes a little more of us and the loss hurts :frowning: However, somehow or other, we get through it - we learn to cope with and adapt to whatever it is and then life gets back onto a more even keel and carries on, albeit a bit different than before. I suppose it’s a bit like being diagnosed: it knocks us for six, but we adjust and accept and then carry on. So I guess what I’m saying is that you’ll pull through, but you need to give it time. Also make use of every bit of help offered! Meds, physio, occupational health, counselling… And if nothing’s being offered, then start asking!

No real tricks that I know of to help recovery other than lots of rest. It also seems sensible to eat healthily and to get back into some gentle exercise when you are able: the stronger and healthier your body is, the better able it will be to repair the current damage. Do get advice about what exercises will help with your mobility and anything else - your GP can refer you to neurophysio if you aren’t already seeing one. If I were you, I would also be taking a vitamin B supplement (it helps with cell repair) and a vitamin D3 supplement (my MS specialist neuro recommends 3-5,000iu a day).

Well done to your husband for nagging you into posting - and I hope you find the forum a lot of support (we all do!) :slight_smile:

Karen x

Thanks for making me feel so welcome! My only other episode was a period of double vision which lead to the diagnosis and had started to go before I had the MRI scan, so this has hit particularly hard as it affected so much! I have been told I will be given an idea of how much D3 to take at my ect appoiintment with the neurologist (August) so I have started myself on a very low dose in preparation (25 I think), and B12 for energy. I have been doing 30 mins of yoga and the odd muscle toning exercise daily, as well as squats and walking on the treadmill 3xday for 10 mins if I can

I know there areb people worse off than I am, but I can’t seem to get my head round this!

K x

I got diagnosed lst year n at first I just shrugged it off as not a problem but it hit home recently cause I had a lot of time off wrk which put a lot of preasure on my home life due to sick pay wages beein less than proper wages my wife has been very supportive but it’s takeing it’s toll on her now to but u just Gota stay strong n take the good with the bad

Hi everyone, i’m new on here and was only diagnosed last december. Going through what feels like an utter nightmare with emotions at the moment. I was feeling okay about everything now i just feel so emotional. Can’t talk to anyone about the ms without crying. Feel so utterly helpless at times! Sorry for sounding like this on my first post but have been reading bits on the forum and everyone just seems so supportive and i was hoping someone could give me a little indication of how they have coped or if they have been through similar things too. I’m off work at the minute cause of various symptoms and i’m in need of a bit of support! Have manic fatigue alot and feel like my body doesn’t know itself at times! Any advice would be great! Thanks xxx

[quote=“Lisa C”]

Hi everyone, i’m new on here and was only diagnosed last december. Going through what feels like an utter nightmare with emotions at the moment. I was feeling okay about everything now i just feel so emotional. Can’t talk to anyone about the ms without crying. Feel so utterly helpless at times! Sorry for sounding like this on my first post but have been reading bits on the forum and everyone just seems so supportive and i was hoping someone could give me a little indication of how they have coped or if they have been through similar things too. I’m off work at the minute cause of various symptoms and i’m in need of a bit of support! Have manic fatigue alot and feel like my body doesn’t know itself at times! Any advice would be great! Thanks xxx

[/quote] Hi Lisa and welcome :slight_smile: It’s best to start your own thread so that everyone sees your post, but in the meantime I can tell you that what you’re going through is absolutely normal and that, although it may take a while, things will get better. Karen x

Hi Karen,

Thanks for the welcome! :slight_smile: It’s nice to know that i’m not on my own, i’m doing my best to stay positive, thank you for the help.

Lisa xx