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Anyone with MS want to chat

(73 Posts)
Tuesday40 Tue 05-Nov-19 13:10:45

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.

MrsC89 Wed 06-Nov-19 17:00:59

Hi, I was diagnosed with RRMS in 2017. Took quite a while to try and get my head around things, I would say ask your GP about CBT, I had a course after I was diagnosed and it helped so much in getting me to accept things.
I am quite open about my MS now, sometimes it's quite obvious, my balance is affected and the fatigue does sometimes mean I'm not as active as I was.
If you have any questions, or just want to talk non MS then feel free to message me 😀

Tuesday40 Wed 06-Nov-19 19:48:17

Hi thanks for replying. I think CBT would be a good idea, but I can’t talk about it without bursting into tears at the moment. Not sure if that means I should talk about now or let the dust settle first. Im not on any treatment yet so feel like I am passively waiting for a relapse. I’m a doer and want to feel in control so am hoping I’ll feel better when I’ve started some treatment.

Do you mind me asking if you are on any treatment and if you still drive?

MrsC89 Wed 06-Nov-19 20:55:21

Please ask away, I really dont mind! I was lucky enough to be offered Lemtrada as my first treatment. I know regulations have tightened up on this now, so its no longer a first line DMT.
I have had both of my Lemtrada treatments, I'm 1 year post round 2. I havent had a relapse since the treatment, I have the occasional flair of old symptoms, but nothing new!
I'm still driving, very soon after my diagnosis we realised that I needed an automatic, but no problems. With MS you do have to inform the DVLA, so I now have a 3 year license, so will just have to reapply when that comes around.
Do you mind if I ask the symptoms you have?

jmh740 Wed 06-Nov-19 21:51:28

Can I join you? I dont have MS but my husband was diagnosed with RRMS in 2015

Tuesday40 Thu 07-Nov-19 12:13:36

That’s great that you haven’t relapsed. Do you mind me asking if you have general symptoms that are always present? And great that your still driving. I’ve let the DVLA know but haven’t heard back yet.

My symptoms are generally with my feet and legs. Initially had numb feet that has subsided but have been left with tight feeling on my feet with is manageable now my balance is better. I’m stressing a bit this week though as my leg muscles have gone really tight. My balance is ok but am struggling with a really tight feeling behind my knees. I am not sure if that’s another relapse or just a MS symptom? It’s hard to know and as it’s new for me I feel like I over analyse every twitch and feeling.

Ocrevus has been mentioned for me but am awaiting a MDT for confirmation. Seems like forever away!

Of course you can join us JMH, hows your husband getting on? It’s hard on partners too isn’t it?

MrsC89 Thu 07-Nov-19 16:14:58

In general fatigue is my only everyday symptom and my balance
My balance is terrible so normally I walk with a stick when in busy places to try and give myself extra space.
I have had altered sensation in my face and arms and also vertigo.
I have also suffered with bladder and bowel problems, but have an incontinence nurse that specialises in MS and that has nearly gone now!
Oh and brain fog, sometimes it just take me a while to process what people are saying, others I can have a conversation then I've completely forgotten about it within minutes.
@jmh740 how are you coping with the diagnosis? I think it hit my husband harder than me. I was glad to know I wasnt imagining things and there was something wrong with me, whereas my husband almost mourned the life we had planned together.

Tuesday40 Thu 07-Nov-19 17:14:32

Thats good to know about the incontinence nurse and that’s more or less resolved. The things we have to deal with eh?

I’m afraid I’m with you on the Brain fog, really struggle with word finding sometimes. My colleagues must think I’m losing the plot. I haven’t told my colleagues yet, feel like I have to get my head round it first. I was thinking about what you said about the CBT. I think as soon as I am on my treatment, what ever that ends up being, I’ll go to the doctors and get referred. I keep telling myself that no one really knows what the future holds, ms or not, and that I need to make the most of what I’ve got while I’ve got it, but I’m not quite convincing myself yet. Plus people who do know keep telling me about the people they know with ms, and they all seem to be doing amazing things like running marathons which is a bit depressing when I’m struggling to walk down the street at the moment!

I’m awaiting a call back from the ms nurse about the tight leg muscles so hopefully that’s something they will be able to resolve to. Keep your fingers crossed for me that it’s not a relapse.

MrsC89 Thu 07-Nov-19 18:09:18

To be honest I'm very much of the opinion, great for the people that can still run a marathon and do all this endurance stuff. I'm quite happy if I have had to use my walking stick when I'm out and about. It really hasnt stopped me doing anything though.
We have been to Florida the past 2 years, ok I take a mobility scooter, but MS can sod off if it's going to stop me being me!

Tuesday40 Fri 08-Nov-19 14:28:05

I like your style. I read somewhere “ I have ms, but it doesn’t have me”. Seems like something to aspire to for me!

AForest Fri 08-Nov-19 22:30:57

Sorry to hear you are going through this Tuesday40. Can I ask how long it took to be diagnosed and what tests you had? I have been struggling with strange symptoms since March. Lots of neurological stuff like tingling in arms and legs and feet, crawling sensations, muscle twitches, overwhelming tiredness and visual disturbances. I had a brain scan 4 weeks ago but still no results as he neurologist is on holiday. I'm afraid I am one of those annoying marathon runners.. or was, walking is as much as I can do at the moment and its driving me nuts.

Toddlerteaplease Fri 08-Nov-19 22:40:53

I was diagnosed in 2012, completely out of the blue. I'd had MRI scan as a volunteer for my local medical school and it was picked up
On that.
I'm so glad it happened like that. I'd already got my head around it by the time it caused me a problem about 18 moths later.

I had several relapses in close succession so started capaxone then Tysabri. I was also very lucky to have Lemtrada. It every not had a relapse since starting Tysabri. The odd flare because of prolonged hot weather/ cat being PTS. But I'm fine. I still work full time as a peadiatric nurse on an acute surgical ward. I do 12 hour shifts and nights. It's really not the end of the world OP.

To be honest the thing that irritates me most is everyone else's reaction to it. It drives me nuts!

Toddlerteaplease Fri 08-Nov-19 22:42:58

And I also discovered that mobility scooters are lethal!!

RosieMapleLeaf Sat 09-Nov-19 00:27:49

Hello OP!
I was diagnosed in 2016. Over the course of one week I lost all feeling from the chest down, wasn't able to walk very well (motor-wise things seemed to be more or less working but I couldn't feel where the floor was ... it was so bizarre).

Looking back I am glad it happened that way. I've read about people waiting for years to know what is going on, for me it was very obviously a big problem and I was diagnosed quickly.

I spent 5 days in the hospital on IV steroids and pretty much everything went back to normal over the next couple of months.

To begin with I was defiant!! I thought that the first relapse could be a one-off since I'd never had any symptoms previously. I was prescribed copaxone ,,, didn't fill the prescription.

I had another relapse a few months later but not as bad. Then again 6 months after that. I was prescribed Tecfidera but it sent my blood counts too low so now I've been on Gilenya for over a year. No side effects, no relapses in that time and MRI is stable.

On a day to day basis my left hand is mostly numb now and sometimes tingly/painful and I get tingles in my right hand. I can't walk very quickly or as far as I used to. I really suffer in the heat. But mostly my life has not changed a lot.

How old are you OP? I was diagnosed at 46. I just turned 50.

Everyone knows someone who has MS and they will happily tell you all about it if they find out you have it too! I can ignore it now but at the beginning it was awful.

Overall it really hasn't made a huge difference in my life (so far). Long may that last.

Wishing you all the best OP.

Tuesday40 Sat 09-Nov-19 18:22:15

Totally out of the blue for me too. Loss of feeling to my feet and pins and needles up the back of my legs. I went to the gp and then a and e expecting to be told I had a pinched nerve or something. Instead was told it was ms that day. No prior symptoms and keep in hospital for 10 days for further mri and lumbar puncture and diagnosed with rrms.

Can I ask you all how long it takes you to recover from relapse. I know everyone is different however I’m starting to feel like the have misdiagnosed me and that I had progressive as I still haven’t recovered. It’s been over two months and whilst my balance is much improved I have really tight legs muscles now. I did have a course of steroids and I think I was expecting a full recovery which hasn’t really happened. Though maybe it’s still early days? I don’t know.

I am desperate to start some treatment as I feel like then at least I will feel like I am getting some control back.

I’m just turned 41 Rosie

jmh740 Sat 09-Nov-19 21:21:21

Oh was diagnosed 4 years ago he has really deteriorated in the last 12 months he was in tecfidera but is going onto a infusion, it's really hard the children dont really understand. oh gets upset about all the things he cant do I want him to think about the things he can do. I think he is depressed and needs more help than I can give him.

RosieMapleLeaf Sun 10-Nov-19 03:00:53

The last relapse o had went on for quite a while. I would say three months at least, it started at the end of August and I know it was still going on towards the end of November when I went to the MS clinic.

Tuesday40 Sun 10-Nov-19 06:53:18

Thanks @RosieMapleLeaf that’s reassuring to know. I’m so impatient and it’s so frustrating isn’t it?

@Toddlerteaplease wow I can’t imagine working 12 hour shifts. I take my hat off to you! Do you have any background ms symptoms that stay with you?

@jmh740 how old are your kids? Have you told them about your DHs diagnosis. It’s such a frustrating disability. I think on face of it most people can appear quite well but the little things suddenly become really hard. Has your DH considered counselling? @MrsC89 mentioned up thread she found it useful

Toddlerteaplease Sun 10-Nov-19 08:21:00

I don't really have any back ground symptoms. Occasionally feel like I've got insects crawling on me. And I get a bit tired but nothing horrendous and probably totally normal for everybody anyway.

Tuesday40 Sun 10-Nov-19 08:42:39

Oh that’s brilliant. I’m putting a lot of faith in DMTs and this relapse finally going!

jmh740 Sun 10-Nov-19 08:48:16

Morning all, our children dd12 and ds9, we have 3 older ones between us in there 20s who dont live at home.
Ds doesnt really remember what his dad was like before, hes never been able to go for a kick around at the park for example, I take the kids out for walks alot at the weekend but oh never joins us.
My step son is here for the weekend he lives 300miles away and we havent seen him for almost 12 months, I texted him before he came to say your dads not doing very well at the moment, he said does he need to go to hospital but I tried to explain no it's just the nature of MS.
We had plans to go out yesterday oh was going to take his son to the pub with some friends to watch football and then we were all going to the cinema but oh is not up to it. So now he feels frustrated that his son has come to visit for the first time in a long time and he cant do anything.
I've been trying to get him to ask for counselling but he was reluctant but hes been in touch with someone through his work and is now on a waiting list I hope that helps.

jmh740 Sun 10-Nov-19 08:56:03

Mrs C do you use the scooter all the time or just on holidays? Oh avoids walking anywhere really, his balance is not very good last week he fell in the house 3 times in the same evening. I've bought him a stick and hes used it a few times but his male ego stops him using it more, my dad has a scooter and offered to lend it to oh to try out but hes not mentally ready for a scooter yet!

jmh740 Sun 10-Nov-19 08:58:15

Tuesday my husband is on tecfidera at the moment hes waiting to go on some different medication. He still drives but has to renew his licence every 3 years.

MarmotMorning Sun 10-Nov-19 09:14:16

jmh740 your situation sounds really similar to mine. My husband was diagnosed in 2003. In so many ways he handles it amazingly but he will avoid doing things rather than use things like a stick / blue badge as he is not mentally ready. This gets harder as the kids get older and want to be doing things.
He works so hard and tries to keep going but gets burnt out.
I second all the people who have who say that getting mental health support is really important.

MrsC89 Sun 10-Nov-19 09:30:57

@jmh740 I use the scooter if I know I would be on my feet all day. So if we were out for a big shopping trip, or a day trip somewhere like the zoo I will always take my scooter.
Just because I use my scooter, I'm not on it constantly, some shops I will leave it outside and use my stick, I use it for the fatigue and balance issues!

Looks like I'm on of the youngest on here, I'm 30, diagnosed at 28

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