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.

Oh that’s good news- not the strange episode!- the appointment. Fingers crossed you get some answers and not long to wait.

Hi @Princesslucky1 how did your appointment go?

Hi stellashere appointment went well he really listened to everything and I think the fact my husband was there to explain what was happening helped a lot.
he is admitting me to hospital on Monday for a few days, loads of tests and also steroids so hopefully I’m closer to finding out what’s happening to me. Thanks for your message

Ah that’s good sounds like he is taking you seriously and hopefully you’ll get some answers

Hello
I have just started reading up on ms and wondered whether any of you had experienced anything similar to me. I am starting to think it might explain my problems. Severe pain in my shoulder and arm, prickling and burning sensations on and off. Better with gabapentin. Physio says this arm weaker than right arm. Have been told probably pinched or irritated nerve but does not seem to be improving much four weeks in. Felt terrible overwhelming fatigue yesterday- really unusual and couldn't do anything at all. Also have some weakness on left side of mouth that I have had for some time.

Hi @cansu sorry to hear you’ve been having some issues. What does your GP think? Have they referred you on for further investigations? The difficulty with MS is the symptoms are so varied which makes it really tricky to diagnose. How long have you been struggling with these symptoms?

Stellashere
The speech issues have been ongoing for ages. I just manage it. I can be really articulate and sometimes there is no problem but it sometimes just happens and is worse when I am tired. The issue with my mouth not moving OK is something I have known about for just under a year. I saw myself on video and was totally shocked. The arm thing is recent. I think the GP isn't concerned. They think the speech thing is just stress. I had an MRI back then that didn't seem to show anything. I mentioned the mouth problem and she was completely uninterested. The arm thing they think is a disc problem but I haven't had any investigations. I was in such excruciating pain when it started I ended up in a and e, but they said it presents as a disc problem. I haven't seen anyone since. They just tell me to take gabapentin and wait for it to resolve. I might be putting things together that are unrelated. I don't know.

Is it ok to join you all?

I've been referred to neurology to see if it MS or another disorder.

Already had blood tests and nerve conduction tests which all came back negative.

Since the autumn I've had nerve issues in my arms, legs and spine (tingling, burning, stabbing sensations) and at my in person GP appointment this week, she noticed that I've reduced sensational down my left side and my left leg is dragging a bit....I hadn't even noticed either of those 😳

I'm feeling scared and fragile. I don't know how long it takes to get seen by the neurologist, or to have an mri, and that sort of makes it worse.

I also have ehlers danlos which may have masked symptoms for some time, plus I take amitriptyline for migraines.

Hi @Boonlark have you got your neurologist appointment. Things seem to move slowly in the world of neuro. I expect they’ll have a chat and a few reflex tests but it’ll probably be another wait for an mri. Have you got family support. It’s such a stressful time waiting for tests and the temptation to google is strong! I’m sure your gp has said but lots of ms type symptoms are present in other conditions so hopefully you won’t have ms- but if you do, although it feels like end of the world at diagnosis it’s really not that bad. Lots of different treatments available these days and changes to diet and exercise can make a huge difference too. How old are you? Have you ever had any of these symptoms before?

How’s everyone else getting on?

Hey, I've posted here before under a different name.

Hope you are all as well as possible !

I've recently been awarded PIP and a blue badge.. was pretty shocked tbh.

Had a MRI 2 months ago and for the 3rd Yr in a row, no new lesions (Lemtrada).

Hi everyone, I too have rrms and would love to join the thread please! Was diagnosed age32 after initially suffering from optic neuritis, saw the ophthalmologist who warned me not to google it which of course I did and she referred me to neurology for further tests.
They suspected MS and told me the definitive test was a lumbar puncture, this then confirmed it.
I lived with it for nearly 10years with no issues then had a really bad relapse, could barely walk. It was agreed to start on DMTs and have been on Tecfidera for 3 years now. Happily no gastro side effects though I do still get occasional flushing. This only happens tho if taken later than usual (I have an alarm on my phone to remind me).
I haven’t had any relapses since but am living with daily symptoms of fatigue, brain fog, balance issues and tingles in my legs. I had my last MRI in November and the neurologist said there did not appear to be any new lesions (yay!) and her letter was a huge understatement when she described it as “reassuring” .
Wishing all those still waiting for diagnoses and treatments well

Hi @Yosami that’s great news that you’ve no lesions- must be a big relief.

Hi @ShoesOnFirstThenCar I’m also on tecfidera. No issues apart from the horrendous flushing every now and then- I’ve leant not to have oranges in the morning or dairy at lunch unless I want to resemble a lobster! Your other symptoms sound similar to mine- tingly feet, fatigue and my balance isn’t great but on the whole I’m doing ok.

@Stellashere great that you’ve worked out how to reduce the flushing. DH thinks it highly amusing to hold his hands up to my face like you would with a fire

I've just been told I need to be referred this week, so it's going to be quite a while before I get an appointment, I think.

My mum's twin sister has MS, and I was referred for it in my late teens but the neurologist didn't want to do an mri as he said I was too young. I'm now in my forties. I've had problems before, but they've gone after a few weeks. This time it's been going on for 5-6 months. Previous GPs, and I have put problems down to my ehlers danlos but having now done the nerve conduction tests, they've ruled that, or slipped disc etc out as the cause.

My aunt has had it for over 50 years and she's done really well, all things considered.

Sorry, that should be 35 years

Hi @Boonlark I hope you get your appointment soon and some answers. In many ways I feel it’s easier -even if it does turn out to be ms- at least you will know what you’re dealing with. It takes away the uncertainty, which is so stressful, and allows you to get on the right medication for whatever is causing the symptoms. Good to hear your aunt is doing well, I think there isn’t enough story sharing about people with ms doing ok in the longer term. People tend to share the worse case eg friend of a friend had ms and can’t walk/speak etc. Need some positivity! Also so much of the medication for ms has come out in the last 10 years which could really slow progression down and being an older person with ms could look very different in the future- hopefully!

Just ended up in A&E yesterday as I'd had a couple of days of shooting pains in my good leg, then loss of some feeling on that whole side yesterday. They've fast tracked my neurology appointment to later this month. And ouch my lower leg is so stiff and tight today, and my arm is heavy feeling

Hi @Boonlark sorry to hear that that. Have they given you any medication or are they waiting for the neuro to look at you first? When my legs where really stiff I found the ms gym YouTube videos on stretches really helpful. I did them a couple of times a day and started taking a magnesium supplement and did feel a difference.

They're waiting for the neuro to see me. I'll have a look at the YouTube videos, thank you. Right now I can only drive for a few minutes, not long enough to do the school run, I really need to get some mobility back

Must be so frustrating for you. If it does turn out to be ms it’s highly likely that your symptoms will subside. I had a spell when I could barely walk and it lasted weeks- I thought it’d never improve but it did. Hopefully not long till your appointment- I saw on your other thread you are struggling to stand. Might be worth letting the neurologists secretary know and that way if there are any cancellations you might get seen even quicker.

@Boonlark Good that you are going to be seen, as @Stellashere says defo try some gentle stretches and also stuff to help flexibility.
I also had a period when I struggled to walk and physio came out to go through sets of exercises targeted at helping strengthen my legs and improving balance. (I already had diagnosis at this point so this was through my ms team). Things like step ups on the bottom step of our stairs, standing on tip toes while reducing reliance on clinging to the kitchen table, sitting down in a chair but controlled, not flopping down in to it.
If you google MS exercises then you can see many different types that would be appropriate for you.

@Yosami

Hey, I've posted here before under a different name.

Hope you are all as well as possible !

I've recently been awarded PIP and a blue badge.. was pretty shocked tbh.

Had a MRI 2 months ago and for the 3rd Yr in a row, no new lesions (Lemtrada).

I meant to reply to you the other night. I got a blue badge as well a while ago and if I’m having a relatively good day I feel a real fraud using it, but on days when I’m struggling it’s a real help. It’s hard admitting to yourself that people think you’re bad enough to qualify for these things. I was in denial for a long while....

It's hard accepting that isn't it?

Ive already bought some smartCRUTCHes as they are much better than normal crutches with my hypermobility. I've decided to get a rollator with a seat because then I feel like I can walk to the shops and wait in the queue etc. At the same time I'm wondering if I'm being ridiculous/being a fraud, because two weeks ago I was hill walking.

My mum thinks I'm just in a bit of pain and should keep doing things as normal. She refuses to accept that there's been this big change so suddenly. I'm both upset at her (she does often use me as a scapegoat) whilst also thinking that I can't quite get my mind round it either.

My current coping mechanism is chocolate. I need help to find a healthier one

@Stellashere and @ShoesOnFirstThenCar I've just bought a yoga stretching strap, so hoping that helps. I like the idea of using the stairs and a chair to work on things, do you think there'll be YouTube videos that might show me how?