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AIBU?

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Original poster

Need a hand hold. Possible MS?

110 replies

Rollonspring11 · 22/02/2020 23:57

I slept last night but not the previous 2 nights with worry as I’m waiting on a scan. Suspected MS.
I am so scared. Can anyone who has been in the same position help me?
Also, if you have MS or know someone who does, which part of the Uk are you in. As I realise it’s often down to lack of vit D and sunlight.
Appreciate this, thanks

OP posts:
Original poster
Rollonspring11 · 23/02/2020 00:07

Anyone? I can’t sleep again sorry

OP posts:
Freddiesgirl · 23/02/2020 00:08

Thanksuntil someone who can help comes along...

Notimeforaname · 23/02/2020 00:09

I'm sorry I have no experience with it, but I'm sure someone will be along soon with some words of encouragement and advice. Handhold from me op Flowers

Original poster
Rollonspring11 · 23/02/2020 00:12

Thanks, I am feeling so helpless just now

OP posts:
AlunWynsKnee · 23/02/2020 00:15

I have MS.
The first time it was suggested I assumed it meant wheelchairs etc but the prognosis is not as bad as it used to be. Lots of people live ordinary lives with MS.

Original poster
Rollonspring11 · 23/02/2020 00:18

AlunWynsKnee- thanks for replying. Do you pretty much lead a normal life then? Are you in Scotland where there is generally no sunlight? ( I am)
Thanks

OP posts:
Tombakersscarf · 23/02/2020 00:18

I have worked with people with MS and the range of symptoms is quite large, even if you have it it might not be anywhere near as bad as you think. I don't think they know a cause do they? But does seem more prevalent in cold dark places (I'm in Scotland)

Tombakersscarf · 23/02/2020 00:19

Sorry cross post OP.

Theduchessstill · 23/02/2020 00:19

I'm sorry you're going through this and obviously no one can tell you what will happen to you and stop you from worrying. My experience with MS is mainly through my exh who was diagnosed with it 18 years ago. He's still fine - just has a bit of a limp and tires quite easily, but I do know that treatments have improved and developed massively over the time he has had it and I'm sure will continue to do so.

I also work with 2 people who have it, one of whom has had it for a long time and other has had it for a shorter time but has more symptoms. The unpredictable nature of it is scary but there will be a way forward and I really think there will continue to be advances in this field over the next few years.

Original poster
Rollonspring11 · 23/02/2020 00:20

Yes, it definitely seems to be more common in Scotland, Ireland and Canada- where a lot of Scots went in years gone by

OP posts:
Original poster
Rollonspring11 · 23/02/2020 00:22

Theduchessstill- I’m hoping that as you say the treatment is good and advancing. Are you also in Scotland if you know of 2 people who have it?
Thanks

OP posts:
AlunWynsKnee · 23/02/2020 00:25

Roll no I'm further south than Scotland :) Born and bred in South Wales :)

Yes, mostly normal. I do struggle to walk distances and I have a brace to stop me tripping over my droopy foot. I work almost full time and do my share of parenting. I do get tired but as long as I am sensible I can do most things. I will be decorating our dining room in the next month!

SomethingBlue22 · 23/02/2020 00:27

I have MS. Diagnosed last year out of the blue. It's certainly a headfuck but its really just a case of getting your head round it one day at a time and if it is MS, take the drugs you are offered to stop any future damage. There are thousands of us out there who still have our mobility and still work and lead normal lives. I know it's scary but if you've had issues going on for a while then it's actually a relief to know what you're dealing with

Star81 · 23/02/2020 00:28

Hi, I am in Scotland and am aware of the suspected high instance of MS due to lack off sunlight link and yes I do know 3 people with it of varying ages .however, all are generally well and coping well with it.

Thinking of you x

wowfudge · 23/02/2020 00:29

I hadn't known about the Vitamin D deficiency link, but have looked it up. We have a friend who was diagnosed a few years ago. She has medication for the symptoms and is doing well. In fact set up her own business and it's going from strength to strength. A relative had MS and lived to old age with it - someone diagnosed over 40 years ago.

mumoftwodc · 23/02/2020 00:30

I don't have any experience of MS but have been where you are now. I had to have an MRI as the consultant suspected I had it but it turned out I didn't. That was nearly 20 years ago now.

Theduchessstill · 23/02/2020 00:32

Sorry, didn't notice you asked for locations. We're all in the Midlands so not as far north as you but still not a huge amount of sunlight. I know ex tended to get relapses in February, so towards the end of winter which ties in with the sunlight thing. Afaik he hasn't had a relapse for 5 years or so, which I think my be related to a new medication he's on, though I can't be sure. When we were together he always relapsed in Feb.. However, the other people I know aren't impacted by the seasons.

I know sunlight is linked to it, but I do think vit D and meds can do a lot so I really wouldn't assume the worse because you are in Scotland.

Original poster
Rollonspring11 · 23/02/2020 00:32

Star81 that’s good to hear that they’re all doing well. To be honest, I just got such a fright when the doctor had said it may be this and I was instantly scared and as I say, haven’t slept properly since. I really appreciate the replies
It makes you feel that you’re not totally alone when you connect with folk with similar experiences

OP posts:
GrumpyHoonMain · 23/02/2020 00:34

I don’t think the link with vitamin d is true any more as the cases diagnosed in India are rising due to better expertise. People there didn’t have access to neurologist years ago and often progressive disability would have been dismissed as accidental.

AlunWynsKnee · 23/02/2020 00:34

The vitamin D thing does seem to be plausible as the incidence is higher in countries with less sunlight but my understanding is that it must need something else to be going on to set it off. I do periodically get the dc to pop vitamin D but my levels weren't low when first tested.

Original poster
Rollonspring11 · 23/02/2020 00:35

Theduchessstill- thanks- I bought vit d as soon as I was told it may be this. That’s interesting about the February thing as my symptoms started in the last few weeks. It sounds positive re the new drugs also and that gives me hope Thank you so much

OP posts:
DoTheNextRightThing · 23/02/2020 00:36

No experience with MS, but I am in Scotland and I'm awake so I thought I would offer my support Thanks I hope you get to sleep OP. It's awful having to wait for medical results.

Hellohellohi · 23/02/2020 00:36

Hi
I know two people with it my ex and another guy I knew . Both lead active lives. My ex moved abroad and does a physical job , the other guy does a physical job as far as I’m aware .

I thought I had it myself ,had the scans but they were clear . I live in the south east of England .

Please don’t think the worst .

LuluJakey1 · 23/02/2020 00:37

My FIL has it. Was diagnosed about 12 years ago. Has occasional flare-ups but recovers well. He has been much better in the last 9 years since he took early retirement from his job as a primary school teacher. Has not had a flare-up for about 18 months this time.

LuluJakey1 · 23/02/2020 00:39

He walks miles, gardens, swims, goes to a gym. Does more now in terms of looking after himself than he ever did.

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