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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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 00:40

DoTheNextRightThing- thank you so much.
It helps so much to talk to people. I ended up calling the MS helpline the other day as I was so upset and they were amazing

OP posts:
Asvan · 23/02/2020 00:41

Hi, one of my friends has MS. She is in her early 40s and was diagnosed about five years ago. She has a toddler and is such an active mum that she puts me to shame. She's always out and about and walks for miles to get to places as she doesn't drive. I am sometimes in awe of just how much she does. She is on medication, which she says really help her and she says she tries not to think about it too much by keeping busy. She does get very tired sometimes though but it really hasn't limited her life in any way.

Try to remain positive and don't let it restrict you in any way.

Best wishes.

Original poster
Rollonspring11 · 23/02/2020 00:43

Lulujackey1- thanks for your reply. That’s very encouraging. I’ve already started to eat a better diet in the last few days and will continue to do so.
Also wondering what the best exercise would be to take up. I’m thinking something to do with balance or something

OP posts:
Original poster
Rollonspring11 · 23/02/2020 00:46

Asvan- that’s fantastic, thank you. This type of story gives me hope. I plan to keep busy to hopefully help with the worry about it

OP posts:
lamalama · 23/02/2020 00:47

Thanks MS affects everybody in different ways. No two people are the same. You may live a normal life for many years to come. If that's what it is then your doctor will put you in touch with a specialist who will give you the correct medicine and advice for the type you have.

There's lots of research going on at the Anne Rowling Center in Edinburgh

Original poster
Rollonspring11 · 23/02/2020 00:52

lamalama- thank you so much. Thanks also for the name of the Anne Rowling centre. I wonder if I could get in touch with them if it is this.

OP posts:
lamalama · 23/02/2020 00:57

I'm sure you could or your doctor will refer you to them.

Good luck with your tests x

Loopzy · 23/02/2020 01:27

Hi, I have MS and was diagnosed 7 years ago, but I'd been having symptoms since my early teens, so about 35 years! I am not on any medication, as I haven't been offered anything. I assume that's because I have missed the boat with taking so long to be diagnosed.

To be honest, I don't discuss it with anyone and most people wouldn't know there was anything wrong with me. I do get tired sometimes, but I remain positive and don't let it stop me from doing anything.

I know it's easier said than done, but try not to worry and don't think the worst.

Good luck with your results.

Loopzy · 23/02/2020 01:28

Forgot to say I'm in Yorkshire!

IceBearRocks · 23/02/2020 01:35

My husband was dx with RRMS at 29. He did a long stint on rebif but is now on Tecfedera. Hes 42 now and despite the odd relapse here and there things have been good... MS is not a death sentence ...we have 3 kids and 1 ha as and another is severely disabled..... life is life..enjoy it all....keep well

Casino218 · 23/02/2020 01:39

My friend has MS and underwent some stem cell replacement treatment last year and her symptoms have all disappeared. I think she was in some sort of trial. But my god the change in her.

mycarpetsun · 23/02/2020 01:47

@Loopzy I'm shocked you haven't been offered anything. My Dad has had it for year undiagnosed and has been offered lots of different things.

Original poster
Rollonspring11 · 23/02/2020 08:37

Casino218- where did your friend undergo the stem cell therapy? Thanks

OP posts:
PermanentlyFrizzyHairBall · 23/02/2020 08:53

I know two women with MS. Both are able to lead almost completely normal lives. One is a teacher the other has a full time job (I can't remember what but the same professional job he had before the onset of symptoms) and also does a lot of volunteering. The former has a disabled badge and does find it difficult sometimes to walk long distances (sometimes this isn't a problem - it varies). The latter has had to stop camping holidays with her family as she finds it too uncomfortable now but they still do very active stuff together - hiking, rock climbing etc. they just don't sleep in tents any more.

FeedMeChoc · 23/02/2020 09:00

They don’t know what causes it. Vitamin D is found to be important in MS but most of the U.K. is deficient and not everyone has MS.

My sister has MS and she has a completely normal life. She works, has 3 children and you would never know. She was diagnosed 10 years ago now.

I completely understand your fear and I can’t tell you not to stress because I’d be a hypocrite. But try not to do any reading about it until you know for sure.

I went to the GP with symptoms and with a family connection was very worried. But it actually turned out to be something else entirely.

FeedMeChoc · 23/02/2020 09:02

@Rollonspring11 stem cell therapy is aroubd 90k and not something that can be trialled without meeting certain requirements first, such as trying other medications for a period without success. So don’t get hung up on that. Especially when you don’t have a diagnosis.

nonetcurtains · 23/02/2020 09:14

I was dx with RRMS in 2015, and now am moving into secondary progressive.

It's great to see the support on this thread but please, wait for your MRI and let the consultant confirm that you have it before assuming it is MS. At this point the hardest thing is waiting in limbo and fearing the worst.
If it is confirmed, you'll be overwhelmed with well meaning people telling you about someone they know, how they cope etc. Everyone is different and how one person is has no bearing on the next person.
I found the amount of info online to be far more hindrance than help, so my advice is stay away from Dr Google and wait for a diagnosis, If it is MS you'll be offered various options of drugs/therapy - none of these are a cure because there is none, but rather the idea is to treat symptoms and delay progression.
The MS Society is a good place for support - their forums are excellent so check them out.
Make use of the hospital's MS Nurses, although again it can be hit or miss how helpful and available they are.
People have asked me 'what is the worst thing about having MS' and I think it's living my life waiting. Always waiting. You'll understand that better once you have a dx. Wishing you well x

Dontdisturbmenow · 23/02/2020 09:55

I was referred for a head scan about 12 years ago with suspected MS. Two GPs (friends) told me to brace myself for that diagnosis as the symptoms I'd had for the last 2 years very much accounted for it. I had issues with pins and needles, numbness, balance issues, and even had my eyesight going in one eye for a week.

I got the scan and to everyone's surprise, it came back fine. Amazingly, the moment I had the results, the symptoms vanished. I have now learned that these symptoms were all stressed related. I still have them at times of pressure, not always when Ithink I am more stressed mentally.

Just another outlook, there is still a possibility that you don't have it, but if you do, as others have said, it is very possibly to live with it and enjoy a normal life.

Iliketosmile · 23/02/2020 09:57

Hello, was diagnosed 13 years ago and live a completely normal life with only 2 or 3 relapses in that time. I've had 2 kids and a successful career (now on hold cos-kids). For me the worst part is having to see a consultant 1x per year. I take beta interferon and that has worked for me. Like lots of other people have said, it's really different for different people. My consultant said to me recently that the way it progresses for you in the first few years is usually how it continues. For me that is positive.

I know your pain tho as in the first instance you don't know what's going to happen. I spent the first week after diagnosis crying about my perceived 'lost' life, but it hasn't happened.

The MS society have an online forum and local branches with met ups and advice. Their info will be available in your neurology dept but also you can call them. Just Google. I'm currently in the Midlands but have lived all over so not convinced location Scotland vs Cornwall) is a 'thing' in UK, Scotland vs Spain maybe...

Good luck

christmassausages · 23/02/2020 10:03

What strength of Vitamin D have you bought? I buy mine on Amazon. It is the 10,000 strength.

I have benign MS. Had symptoms after my son was born, pins and needles and numb hand/leg. I didn't have any other children which I believe stopped the progression. My sister also had symptoms after her first child. She then had another child and the MS has now progressed. She has mobility problems.

LyingWitchInTheWardrobe · 23/02/2020 10:14

I have MS (relapsing remitting). I was diagnosed in 2018 and put on medication to stave off episodes. I haven't had any relapse since but there's a great MS team here (South Wales) and at least I'll know what it is if/when there's another one.

PP have already said about the unpredictable nature of the disease, there's very little known about it. As already mentioned - take Vitamin D. My consultant says double the dose and keep a positive mental attitude, that's really important.

What led up to awaiting diagnoses, RollonSpring? I lost my sight in one eye (it came back), that's what nailed it. Before then it was various neurological things that I ignored. When will you next be seen?

The MS Society has a really helpful website, lots of information there.

LyingWitchInTheWardrobe · 23/02/2020 10:22

I agree with nonetcurtains, googling is the single most frightening thing you can do and you should avoid it at all costs. Wait for the results of your scan. Once you're 'in the system' you should get lots of support.

Hope your scan results are clear and that either way, you will have your mind put at rest.

Loopzy · 23/02/2020 10:49

@mycarpetsun That's interesting to know, maybe I need to go back to my GP and ask to be referred back to the Neuro for a review. I just assumed it was because I took so long to be diagnosed. Is your dad in the UK?

Loopzy · 23/02/2020 10:55

@christmassausages Please could you let me know which Vit D you buy from Amazon? The highest strength I could find last time I needed some was 4,000 IU. Thanks,

NotEverythingIsBlackandwhite · 23/02/2020 11:19

I'm sorry you are in this situation and hope for the best outcome for you.

I have a friend in the Midlands with MS. There are different types of MS and, while she was diagnosed about 20 years ago, her diagnosis type has changed from 'Relapsing-remitting' to 'Primary-Progressive'. She has been in a wheelchair for about 3 years from the age of 59. She has vision, hearing, mobility and incontinence problems and is on Oromorth and pain patches for burning pain in her limbs.

This is my only experience, thankfully, of someone with MS but I understand others have the relapsing-remitting type and, while still not what anyone would want, can manage life really well apart from their flare-ups.

What I would say is, if it was purely down to lack of Vitamin D and sunlight then wouldn't far more people have MS (and wouldn't treating it be a doddle)?

Insufficient Vitamin D has-been connected to many diseases and may or may not be a contributory factor.