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.

Hello. N/C for this.

I was dx in 2010 with RRMS. Almost 10 years on and I have only had 1 "full-on" relapse which involved a hospital stay. I have other flare ups of symptoms, especially when my schedule is hectic at work, but this is manageable with preparation and rest (and a bit of sense, and learning to say no).

I have some daily symptoms too, that I don't really notice... sensory issues in my leg, balance can be off (I hate stairs!). Fatigue and cog fog at times.

It is a snowflake disease, everyone experiences it differently, so it can be very hard to compare symptoms and outcomes, and I try not to do that too often... some of my MS friends are doing brilliantly, others have a far harder time with it.

You will probably find out as you start telling people, that there are a lot more people with MS than you realised. I am just back from a European conference for young people with MS (just scraped in this year, cut off is 40 and I am 39) organised by Shift.ms and the European MS Platform. 150 of us, at various stages - it is so nice to be in a room with a heap of people who get it! I think Shift MS is a great website.

I do a bit of work with MS Ireland, so if you want me to send you some real-life stories, we have a weekly blog. Happy to share here or PM.

@MSNeevie I’ll check out shift, thanks for the recommendation.

@Tuesday40 don't worry about not replying. I probably shouldn't be on here as my symptoms are still a mystery. I just can't get the thought of MS out of my head. If you google tingling symptoms its always the first thing that comes up. When I add in my muscle twitches, facial, cognitive and fatigue symptoms I can't help worry. I had a brain MRI without contrast and not received a follow up appointment yet. My neurologist was very dismissive saying it is probably all due to migraine, but wouldn't listen to my symptoms and the massive effect on my life. Anyway I will find out one way or another soon. Thanks for the reply. It sounds like a disease that is so different for everyone. I hope everyone stays positive.

I also have MS, dx officially in 2014, after my first set of symptoms in 2012, Neurologist told me he thought I had MS but waited for further relapse to confirm the dx. My first symptoms were pins and needles, numbness, poor balance, dizziness, & fatigue.

It was quite a shock and came completely out of the blue, I was 40 at the time and my children were just 10 & 8 at the time, it was a horrible period of my life that I wouldn’t wish on anybody.

I have learned to make lots of changes to make my life is easy as possible. Some days are easier than others, but I will never give up. I never think too far into the future and try to live for the day and rest when I need to.

Good luck OP

Your symptoms sound quite similar to mine @Roselilly36 do you mind me asking how you are getting on a few years after diagnosis and if you are on any treatment for your MS?

Of course, I started on Rebif when I was first dx, had a few problems on that treatment, mainly injection sites made my skin sore, also I had further relapse, so it was decided that Rebif was not controlling my MS well enough so I moved onto Tecfidera, been on Tec for about 4 years, much easier just tablets a day. Said to reduce relapse by 50% and make relapses milder, I have recently had a very mild relapse. Just had my annual MRI scans, Neurologist is looking for a new lesion if one is found he will make a case for one of the latest DMD’s.

I am getting on ok, obviously there are issues, but I am very positive. I have been very fortunate to have a supportive GP, Neurologist and MS nurse specialist. Some days I feel fed-up but on the whole I do my best to get on with my life and accept the limitations I have. For me the turning point was accepting the dx, that took me about 6mths, once you accept it you can start to move forward.

I am seeing a neurologist on 12 December as doctor at orthopaedic clinic I was sent to in the summer about my back was concerned about the possibility of MS. I’m very worried.

How do you find Tecfidera @Roselilly36? It’s a drug that’s been mentioned for me. I’ve done a bit or reading up and I understand it can make people have upset stomach
etc

Sorry to hear you are worried @nicky2512 what are your symptoms? It’s so hard when you are waiting, google is too tempting!

@Tuesday40 I was originally diagnosed with fibromyalgia but have got a lot worse in last year. I have awful fatigue, back pain, fall frequently, weird sensations on face and neck, tingling/buzzing feet legs and hands, tremor/twitch in one arm amongst other symptoms. Also have weird reflexes in feet that concerned the previous doctor I saw. Dreading appointment yet want it over.
Thing is though I had mri of my back in summer and no one mentioned anything so surely it can’t be MS.

Tummy has been fine, flushing is sporadic, my nose sometimes runs, but other than that no other issues.

@nicky2512 it must be a worrying time for you. I don’t know much about MS as I’m still learning about it but it seems that other conditions have similar symptoms to MS. Hope you get some answers at your appointment

@roselilly36 that doesn’t sound too bad in terms of symptoms. Do you have long to wait to find out if you are switching DMD

May I ask how old most of you were when diagnosed? I have some troublesome symptoms on top of existing auto-immune diseases (including the insect crawling sensation and the peripheral neuropathy) but I believe am too old to start MS at 60.

@Tuesday40 Thank you. I suppose at least it will be better to see what is wrong and I am grateful to be seen so quickly.

Really pleased to find a new MS thread. I am 38 and was diagnosed with RRMS in the Spring. It took a while to get treatment sorted, I started on Tecfidera but it didn’t agree with me (crippling stomach pain - akin to labour) and am now on Aubagio which isn’t giving me any trouble. It’s a shame that I had to go from a 50% effective drug to a 30% one but never mind.

Mentally I’m ok, I have ups and downs and there are times when I get worried about the future, particularly money, as we’re not well off and don’t have much in the way of savings to fall back on. We also have a pre-schooler. But generally I am sticking my head in the sand and trying to carry on as normal as it’s in remission at the moment.

Hi @DawsonsSheep, seems there are more of us about than I thought! Sorry to hear Tecfidera didn’t agree with you. Have you been relapse free sent you started on aubagio?

I know what you mean about worrying about the future/money. I’ve got a bit of debt knocking about that didn’t bother me before I got diagnosed but I’m going to prioritise clearing that over the next year or so incase isn’t ability to work is affected in the future. Do you work? Am struggling with work and fatigue at the moment, I can manage to work but feel like I need the weekend to recover and don’t get to do the things I want to with my children at the weekend as am so tired

Hey another RRMS here.

I've had both rounds of Lemtrada. No relapses since before round 1.

Doing well mostly. Pretty much don't really think about MS, I just find it easier this way but I am 3 years post dx. I'm 46.

Some of my symptoms have never gone. Pins and needles/numbness from the waist down & in my arms.

Work full time but my children are 17+ and can help out at home and fend for themselves!

Not sure if I have been relapse-free, next MRI is in December. My last one showed more lesions even though I’d had no symptoms, so if there are more this time I’ll move on to Ocrevus.

I work full time compressed in to 4 days, they have been amazing so it’s wonderful to have their support. Have you spoken to your work about it? They might be able to suggest some adjustments to help with your fatigue? That sounds really tough.

Hi all, I'm currently under a neuro who thinks I probably have fibromyalgia and not MS and I'm awaiting the results of my MRI but I'm not convinced it's fibro.

Started off with shoulder blade pain a few years ago and now my whole right arm goes numb with pins and needles, shooting pains, burning, hand swelling. It spread to my left arm elbow down. Sometimes my left wrist feels awful and weak. I had started getting numbness in my calves and feet and shooting pains in my shins.

The neuro said because my balance is fine and have muscle strength it probably won't be ms. But my muscles across both arms, neck and shoulders are permanently tight and tense. I get twitching muscles for no reasons. I have regular sports massage and she can't believe how tight my muscles are. I am always tired, if not exhausted.

I just want some answers.

Hi @Lovingmylife sorry to hear you are having a rough time. Any idea how long you’ll have to wait for your MRI results? Also have you had your bloods done re your fatigue?

Hi everyone how are you all?

I am currently waiting on an MRI as ive had a few symptoms & have a family history of MS. It started with my balance, always stumbling/falling over, tingling in my hands & feet.

I’ve just turned 31 & started a senior position about 6 months ago. I’ve taken 4 weeks off over Christmas & I am very worried about the future of it is MS.

Oh & the words wont come out or come out wrong.. hence my name.

It's so difficult not to worry, but many people with MS continue living relatively normal lives.

There are good treatments available and the outlook really isn't so bleak anymore

Hi @Mixitupalot sorry to hear you are going through this. It’s such a worrying time, particularly if you have had family members with MS. But as @Garbosdinner says times and treatments have changed and even if it does turn out to be MS the outlook is very different these days. That being said I hope it’s not MS and that you have your MRI etc soon. Do you have long to wait until your appointment?

I hope it's ok for me to join in with this thread, it's been a real eye opener to read. My oldest friend has had MS for a few years now and is currently having a relapse. She also works for me in my business (office based) so obviously isn't in work at the moment. Could I ask what sort of adaptations and arrangements I might be able to make that would be helpful to her, based on your own experiences? For example, working from home, or other adaptations? I'd really like to make her life easier but I'm unsure where to start with what to offer her.

Hi @anunseemlylovefordustin, of course it’s ok for you join. You sound like a lovely caring friend. I can only speak from my own experience but having flexibility to work from home and good parking close to work really helps me. Have you asked your friend what would help her? To be honest work is such an escape from the day ms problems that I have I don’t what I’d do without it.