Forum

Numbness

Hey, I am new here.

I was diagnosed with RRMS in Jan this year, after starting my journey in August 2018.

My first symptoms that triggered me to get checked out were an eye floater (dark shadow in my eye line) & numb skin on both my calves, I am very clumsy & get brain fog and I know from experience that these signs can be m.s related. (Both my mum and her dad have it & I work with a lady who also has m.s also).

Looking back I think my first actual relapse was when I was 18, my right hand went numb from the wrist down for several months. I couldn’t use it at all. I had lots of tests at the time and it was just never figured out. Eventually the feeling came back around 6 months later but its never been the same.

Right now I still have my eye floater and numb calves, I also have a spasm in the outer corner of my right eye which has been going for for around 10 weeks now, this weekend at lunch time Saturday, my left thigh went numb. I am now covered in bruises as I keep walking into corners of things and not realising.

I am frightened, I have only been diagnosed in Jan this year and already so much is happening. I guess I just wanted to say hey.

I also have a lot of questions. I phoned my MS nurse to tell her about my new symptoms and she says if I am still able to go to work then I need to try and ride it out. I have my treatment appointment next month so she says to wait until then. Is this normal? Do you report your symptoms each time? I am not sure what I am supposed to do now I am diagnosed. I guess some guidance from experience would be handy here.

I have tried to explain my fears to my partner that I might not get the feeling back, but I end up frustrated with him because he doesn’t understand or he comes across as insensitive. I know he wont truly understand so I need to learn not to get frustrated. How does everyone else cope with this, have you any useful tips or do you have super partners?

Thanks for reading x

Hi Tou89lou

I was recently diagnosed after 14 months of tests. My diagnosis was entirely expected as I been well prepared by my MS nurse.

My nurse has been fab and I have had cause to ring her on a few occasions although I have not as yet reported new symtoms. I have just had general questions.

I am due to start Copaxone shortly just trying to get my head around all that. My employers have been great and very accomodating. My partner has been supportive but I do sometimes get frustrated with him as I sometimes don’t really think he understands how im feeling (some days like rubbish)

The diagnosis was a relief in a lot of ways and I now feel like I can move on a little bit and start the next process (DMD).

Have you been offered a DMD?

Good luck

Alberito x

Hello

Blimey there seem to be quite a lot of irritable MS nurses around just lately. I suspect they are overloaded with patients and that’s why they are a bit useless sometimes. ‘

It doesn’t matter how much you know about MS from other people, when it’s you, a) it’s different (it is always different), and b) you don’t know what it actually feels like.

This by the way is probably why your partners don’t always ‘get it’. How could they? It’s not them. They may live with MS, just as we do, and they can be fabulous, but they still don’t know what it’s like at 3am when you’re awake and scared.

Something that seems odd is that you are diagnosed with relapsing remitting MS which makes you think you’ll have a relapse and either get steroids for it or not, but regardless, the relapse will remit within a certain length of time. This is untrue for a couple of reasons. The first is that each relapse is different, it will last as long as it damn well likes, regardless of steroids (which are subject to their own lack of ‘rules’ - sometimes they work and sometimes they don’t). Remission is much the same, sometimes it is brilliant, you get past the relapse in a matter of weeks. Sometimes it’s rubbish, remission takes so long you don’t even notice it getting better. One day you’ll suddenly notice, ‘hey my thigh isn’t numb anymore, I wonder when that stopped?’

Other times remission is incomplete. So you can get over the relapse, but there are permanent issues left over. For example, my first MS attack was a bit more than 22 years ago. I haven’t been able to feel my feet ‘properly’ since then. But our bodies compensate for the deficits. I stopped remembering what ‘normal’ feet felt like because my feet just felt the way did, or didn’t. Subsequently I had a very nasty relapse, and the feeling changed again. Now I can’t walk properly and my feet are more numb than they were, but I still notice if someone drops something heavy on them!

In terms of what to report and what not, start keeping a health diary. I have an app that I’ve been keeping for nearly 8 years now. I have various symptoms ‘tagged’ so I know when something starts/stops and any changes happen. It’s also invaluable for noticing side effects from drugs. If your MS nurse doesn’t want to know, at least you’ll know.

And as for asking questions, there will either be old hands like me, ready to explain their experience, or fellow newly diagnosed, like Mel. Either way, there’s always someone to share your feelings with.

Your partner will sometimes be a brilliant person to have around with regard to MS, but don’t forget he’s a man. And one who is probably as scared as you, but less able to talk about it. If you want fellow feeling, at least you know other people with MS (just remember your MS is different to theirs, we all have a different version), and there’s us. If you want a partner in life, someone who may not understand, but will just live with it, then that’s the man you have.

Good luck.

Sue