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.

Brilliant news! Hopefully some answers for you soon

@Stellashere

Brilliant news! Hopefully some answers for you soon

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Hopefully 🙂

It feels like everything is happening so fast.

A month ago I was hill walking. I suppose it feels especially unreal because the letter from the council agreeing ds2 needs transport to school, was on the doormat along with the MRI letter and ds1's bus pass. I'm finding it hard to take it all in.

Yeah bet it all feels surreal, however one thing that definitely isn’t good is stress or worry and a quick answer to whatever the cause is good.

@Boonlark

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

Great news! And I couldn’t quote your other post but seems like it’s all coming together now.

I went to see a neuro physio yesterday as I’ve been having terrible lower back pain which is a different pain iyswim. Not like my ms at all.
Upshot was that it’s not caused by the ms but is exacerbated by it as I’m unconsciously making adjustments to my posture and stride pattern.
She poked and prodded me and did some strength testing and today she’s emailed me different exercises to increase my strength. Did them earlier, some easier than others. Keeping at them now is my next challenge!!

Oh I'm glad you've got to see that physio. Pain on top of the MS sounds exhausting and frustrating.

@Boonlark hope it goes ok for you tomorrow. I try and make a pattern and rhythm out of the bangs find it distracts me!

[quote ShoesOnFirstThenCar]@Boonlark hope it goes ok for you tomorrow. I try and make a pattern and rhythm out of the bangs find it distracts me![/quote]
Oh that's a great idea! Also, how loud are the bangs etc?

Yeah hope all goes ok today. Bangs are loud but they will usually put music on for you to try and drown it out

So I had the MRI. Sadly they wouldn't let me look at the pictures, and when I asked, they turned the monitors off.

It was so loud. I almost had a panic attack quite a few times, but thankfully they'd let one of my support bubble in, and they stood and held my ankle throughout so that I knew they were there. And it was long, 1.5 hours. They're an amazing friend!

I hope I never have to have another MRI, I found it really hard, even with a sleep mask on and trying to match music to the beats etc.

So now I've just got to wait until the results are ready. But tonight....it's 🍫 and ☕️

Glad you’ve had it done @Boonlark but sorry you found it difficult. I don’t like it either but didn’t want to say too much before you had yours done. What an amazing friend you have! Hopefully you’ll get your results soon- did they give any indication of how long till your doctor will be in touch?

@Stellashere

Glad you’ve had it done *@Boonlark* but sorry you found it difficult. I don’t like it either but didn’t want to say too much before you had yours done. What an amazing friend you have! Hopefully you’ll get your results soon- did they give any indication of how long till your doctor will be in touch?

. No, they were very close lipped. Wouldn't be drawn on anything. It's quite frustrating as I know other people who've been allowed to see their brain pic.

I've woken up very achey and tired, but my dc have just brought me breakfast in bed

@Boonlark sorry it was an unpleasant experience for you. Hope you’re feeling a bit more relaxed this morning, make sure the dc wait on you hand and foot all day! And what a lovely friend to do that for you.
I’ve got to say I’ve never seen mine until appointment with neuro, not to be controversial but I can see why they aren’t allowed to show you, imo think it’s better to have the images explained by someone qualified and who knows what they’re looking at? Not that a radiologist isn’t qualified but maybe not enough in that field? Hope that makes sense and I don’t mean to sound flippant, difficult to get tone across in writing
Now have a lovely chilled day enjoying the sunshine!!

[quote ShoesOnFirstThenCar]@Boonlark sorry it was an unpleasant experience for you. Hope you’re feeling a bit more relaxed this morning, make sure the dc wait on you hand and foot all day! And what a lovely friend to do that for you.
I’ve got to say I’ve never seen mine until appointment with neuro, not to be controversial but I can see why they aren’t allowed to show you, imo think it’s better to have the images explained by someone qualified and who knows what they’re looking at? Not that a radiologist isn’t qualified but maybe not enough in that field? Hope that makes sense and I don’t mean to sound flippant, difficult to get tone across in writing
Now have a lovely chilled day enjoying the sunshine!![/quote]
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Thank you for talking sense

I'm just anxious about it all, and being able to see the picture of the scan feels like it would have helped somehow, even if it likely wouldn't. Not knowing is the worst, isn't it? I shall have to try and keep my mind busy for the next few weeks, I think. Though, I'm really not feeling like being patient today

Morning everyone. How are you all doing? Just wanted to ask if anyone else gets finger tremor and leg muscle twitching? It's really weird seeing my thigh muscle moving on its own . I also found that a double ring stops my two fingers vibrating, tried this one, and have now ordered another https://www.etsy.com/uk/listing/888916530/double-finger-ring-open-silver-ring?ref=shophomeactive_1&crt=1

Hi @Boonlark how you getting on? Still awaiting your mri results? I’ve had a bit of muscle twitching over the years - pre diagnosis and only very briefly. That’s good that you have found something to help. How are you getting on in the heat? I love the warmer weather but my legs don’t! Makes them much stiffer unfortunately

@Stellashere

Hi *@Boonlark* how you getting on? Still awaiting your mri results? I’ve had a bit of muscle twitching over the years - pre diagnosis and only very briefly. That’s good that you have found something to help. How are you getting on in the heat? I love the warmer weather but my legs don’t! Makes them much stiffer unfortunately

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Yes, still waiting for the MRI results. I'm feeling impatient but trying to remind myself that it won't make them come any faster!

Oh does hot weather make things worse? That's a relief. My legs and arms are worse at the moment and I was worrying. Phew.

My lovely brother has swapped cars with me so I'm now using his automatic. It's not adapted, but it's easier on me than my manual gearstick. I do love my car though, as I got it after divorcing my ex and it's sort of a symbol of my new found freedom. Still it's better to have a car that's easier to drive

Hi @Boonlark and @Stellashere , seems this thread is just the three of us now . I get twitches in my left leg, sometimes in the right but not as much, usually when I get up from bed in the morning. Almost as if it’s twitching itself awake.
And yes I struggle in the heat too, my legs have not been happy at all today. Ironic that vitamin D is good for ms but warm sunshine not so much.
Great that you’ve got your brothers car now too @Boonlark , just maybe look at this in a similar way to your other car but this is representative of your next stage, coping and living with potentially ms, a symbol of continued freedom and independence.

@ShoesOnFirstThenCar

Hi *@Boonlark* and *@Stellashere* , seems this thread is just the three of us now . I get twitches in my left leg, sometimes in the right but not as much, usually when I get up from bed in the morning. Almost as if it’s twitching itself awake. And yes I struggle in the heat too, my legs have not been happy at all today. Ironic that vitamin D is good for ms but warm sunshine not so much. Great that you’ve got your brothers car now too *@Boonlark* , just maybe look at this in a similar way to your other car but this is representative of your next stage, coping and living with potentially ms, a symbol of continued freedom and independence.

. I like that, that's a really good way of reframing it.

It's been really hot here. We went to visit my support bubble and played board games at the table. I ended up having to lie on the floor as sitting was too uncomfortable They took it all in their stride. I think they're getting used to my foibles

After DD was dx with SEN a good friend of mine told me “you just have to reset your ‘normal’ “ and I think he has it spot on. Relevant for my current situation too and I try to remember his words when things just seem overwhelming. Helps me to think, well no, this isn’t what you planned but this is how it is. Get on with it

RRMS dx 2012. Feeling nervous this morning, first face to face with my new neurologist, I have recently relocated and after 9 years of having the same excellent Neurologist. I am feeling really apprehensive about my appointment. I have been struggling recently double vision, giddiness, burning pain in two fingertips, always seems to be a night and stops me from sleeping. So I should be thinking great timing to see the Neurologist. Written a list as I can’t rely on my memory. Hopefully it will all go ok.

Aw, remote hand holding from me. I hope it goes well and they listen

Thanks @Boonlark the appt went well, gave me some things to think about, perhaps changing medication. Seemed quite nice. Feel tired now though.

It’s amazing home much these things take out of you. Have they told you which meds they want you to consider?

@Stellashere. I am currently on Tecfidera, previously on Rebif. Neurologist was talking about a new one, one tablet a day that aims to slow progression rather than prevent relapse. He did say the name, but I didn’t take it in sorry!

Hm wonder which one that is. Feels like a big decision to change meds doesn’t it? Hope you are feeling a bit less drained after your meeting now