Anyone with MS want to chat

[Tuesday40]

Hi I’ve recently been diagnosed with MS and wondered if anyone wanted to chat? It’s still a bit raw so don’t feel able to talk about it to people face to face.

I’ve not started treatment yet and feeling worried about what the future holds. Be great to chat to people a little further along than me, or equally hand hold with people going through the same thing.

@Boonlark I had a rollator for just getting round the house when I had the last bad relapse, I also have a walking stick which lives in the boot of the car, just in case....
I still struggle with the mental effects of it. Some days are better than others. I try to remember (selfishly perhaps) that I’m doing a lot better than some.
I’ve attached a picture of the sheet I was using. The step ups are described in no6. I used the bottom step of our stairs so I had the bannister to hold on to.
Sorry to hear your mum is not really accepting things. And there is nothing wrong with chocolate as a treat. I’m off to have a cuppa and my current fave biscuits (m&s toffee and pecan shortbread) (smile)

[quote ShoesOnFirstThenCar]@Boonlark I had a rollator for just getting round the house when I had the last bad relapse, I also have a walking stick which lives in the boot of the car, just in case....
I still struggle with the mental effects of it. Some days are better than others. I try to remember (selfishly perhaps) that I’m doing a lot better than some.
I’ve attached a picture of the sheet I was using. The step ups are described in no6. I used the bottom step of our stairs so I had the bannister to hold on to.
Sorry to hear your mum is not really accepting things. And there is nothing wrong with chocolate as a treat. I’m off to have a cuppa and my current fave biscuits (m&s toffee and pecan shortbread) (smile)[/quote]
Aw thank you, those are really helpful!

My lovely db has offered to swap cars for a bit as he's got an automatic, so today we're going to see if I can drive it with just my left leg using the pedals

Oh how kind of your db. I actually drive an automatic now, it’s fab!
Hope it works out.

Erm, I tried driving it earlier. It didn't go well.

Does anyone else here drive one using only your left foot? I'm so used to a manual gears tick, that I put my left foot on the accelerator as if it were the clutch. Gave my dB a fright as we zoomed backwards, and then I got too nervous to do anymore. Going to try another time in an EMPTY car park

Sorry it didn’t go too well...I can still drive with both feet luckily but am weaker in my left so am happier without a clutch. DH said you’re like a rally driver in that they do left foot braking
I’m not suggesting you’re in this position at all as I don’t know you obv, but should the need arise there are so many adaptations they can make to cars these days to help drivers with disabilities. DH was mentioning different things when I mentioned your adventures. Better luck next time tho!

@ShoesOnFirstThenCar

Sorry it didn’t go too well...I can still drive with both feet luckily but am weaker in my left so am happier without a clutch. DH said you’re like a rally driver in that they do left foot braking I’m not suggesting you’re in this position at all as I don’t know you obv, but should the need arise there are so many adaptations they can make to cars these days to help drivers with disabilities. DH was mentioning different things when I mentioned your adventures. Better luck next time tho!

. at rally driver braking. I read up a bit more and apparently it's a bad idea for me to try using the accelerator with my left foot, as I'm used to putting my foot down on the clutch when I brake. There are issues with people accidentally accelerating when they meant to brake, and crashing!

I think I'm going to contact a mobility assessment centre and ask for a driving assessment. Sadly I've got weakness all down my right side, plus some spasticity in my right leg/foot. With the ehlers danlos I can't sustain long times of gripping with my hands, which may rule out hand accelerators. So hopefully the experts will be able to figure something out.

Anyway, that's enough about me; how are you all doing?

Hi @Boonlark how are you getting on? Have you had your neurologist appointment yet and did you dare to have another go in the car?

@Stellashere

Hi *@Boonlark* how are you getting on? Have you had your neurologist appointment yet and did you dare to have another go in the car?

. My appointment is lunchtime tomorrow. I'm really nervous and don't know what to expect.

I haven't dared get back in the car. I'm going to wait and see what the consultant says. I'm also applying for PIP but I know it takes ages and most people get turned down and have to appeal. So in trying to work out how to afford the £££ it costs to convert an automatic to having a ring accelerator on the steering wheel. I'm not sure I'd be Bale to apply for any grants without a diagnosis?

The council are going to let me know if my youngest qualifies for school transport, sometime during half term. And my ds1's dad is going to teach him how to travel on the bus to school. So next week, I'm going to need some help getting them both to school and back. And hoping the council say yes to ds2.

How are the rest of you getting on?

Tomorrow- great news. Hopefully you’ll get some answers. I applied for PIP initially when my symptoms were bad as was in throws of a relapse and was turned down. My symptoms have massively improved to the extent that no one would ever know I had ms unless I told them (which I don’t!) I think it’s really hard to get a pip award if you do the form yourself - might be worth seeing if CAB can help with it? I’ll be thinking of you tomorrow and hope you get on ok

Also it may be worth asking about a course of steroids- if they will do that at this stage- as can accelerate symptoms going away

@Stellashere

Tomorrow- great news. Hopefully you’ll get some answers. I applied for PIP initially when my symptoms were bad as was in throws of a relapse and was turned down. My symptoms have massively improved to the extent that no one would ever know I had ms unless I told them (which I don’t!) I think it’s really hard to get a pip award if you do the form yourself - might be worth seeing if CAB can help with it? I’ll be thinking of you tomorrow and hope you get on ok

. That's a great idea about getting CAB to help me. Is it strange to hope that this is MS and it's a relapse, so that I might get better again?

@Stellashere

Also it may be worth asking about a course of steroids- if they will do that at this stage- as can accelerate symptoms going away

Thanks, I'll ask. I hope that sorts it!

Just got back. He suspects MS, but it could also be something to do with the ehlers danlos, so he's referring me for both a brain and spine MRI, asking for me to be put on the urgent list. Reckons it'll be a couple of weeks or so to get the scan date, and then another 2-3 weeks for them to look at the results.

So far, I'm feeling better than I thought I would...although I'm really tired. Just getting out of the uber and getting to the out patients area was tiring and I had to stop and sit down part way. Really glad I took the rollator with the seat. My right leg is aching a lot now and my arms feel really heavy, but I did it 🙂

How do you feel about it @Boonlark? It’s good that they are going to do MRI- do you know if it’s with contrast? If they use contrast they can see any previous legions to be able to diagnose. I know what you mean about a bit of relief if it is MS- I was convinced they were going to say I had a brain tumour so the ms diagnosis was a relief for me too. Not to say it’s easy because it isn’t and there is always the worry about what the future looks like - but MS or not I could get knocked down by a bus next week so I try not to worry about things that haven’t happened. Also as you say if it’s ms then highly likely your symptoms will improve, or maybe even go completely. I couldn’t walk from the kitchen to the living room when I was relapsing when I was diagnosed but now thankfully can walk unaided for miles. I’ve still got loss of feeling in my feet but not to the extent that impacts my mobility. Did you try the exercises? Have you felt that they’ve helped at all?

I have tried the exercises, but not as much as recommended...I shall do them more.

The consultant encouraged me to keep exercising, even if it's less than I could do before, so I'm going to try going back on the crosstrainer and see how that goes.

I just had a thought. I can't drive because my leg gets tired and sort of cramps up/gets too rigid after a course le of minutes. Do you think compression socks would help? I was thinking that compression helps my wrists, so maybe it would help my leg?

Oh and feelings wise, I'm feeling OK. I thought I might be upset, but the consultant was lovely and calming, and told me the next steps, which helped.

I don't know if it will be with contrast or not, I didn't ask that. I'll have to wait and see.

Not sure about the compression socks but I guess anything is worth a go! I found little and often helped with the exercise. I’d do five minutes then rest for a few hours and repeat

Glad you’re feeling ok about it @Boonlark . Though i guess you’ve had a bit of time to consider it as a possibility..

I’ve not had the best week, after realising (more like admitting) that my mobility is never going to be as it was and as DH and I like to go out for days or go for walks when we are able, I relented and got a little wheelchair . I cried in the shop but the lady serving us was so lovely and didn’t make me feel worse! We were all laughing in the end as DH was doing test runs like a loon, she advised I might need a crash helmet

I agree about the exercising @Stellashere , I find I can do a bit then have a —long-- rest before doing more.

Doh....strikethrough fail!!

Aw, sending you some virtual hugs. That sounds really tough.

One of my rollators can convert into a transport chair, so that I I get too tired the dc can push me

Also your dh sounds fun, I've now got visions of him racing round doing handbrake turns etc

Hi @ShoesOnFirstThenCar it sounds like an emotional time so hard to acknowledge when we need a bit more help. Your DH sounds lovely and like he managed to lighten the mood.

Just got my MRI date. It's this Sat in the evening. I'm a bit shocked by how quickly it's come through.