Need a hand hold. Possible MS?

[Rollonspring11]

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

@Dontdisturbmenow
I had the same experience . Referred to neurology , really worried . Mine was stress related .

Hellohellohi- could you possibly tell me- so if yours was stress related, was your scan clear if you had one? And did your symptoms go away?
Thanks

I was diagnosed with MS about 3 and half years ago, it wasnt actually mentioned as a possibility until after the MRI scan. My symptoms were suggested to be more likely to be my anxiety. I live in the midlands too.

I still work full time, and if you saw my at my desk you wouldnt have a clue. I walk with a stick now as my balance is off but otherwise pretty normal. I also have a mobility scooter as I suffer fatigue easily.

But as others have said above, no one suffers MS the same as another. And dont google it. If you want to read up use the MS Trust or MS Society pages for a accurate viewpoint.

Good luck with everything and hope you get positive news.

My cousin has MS. Interestingly also lives in Scotland. I had no idea of the sunlight link. I had thought of it as an hereditary thing. Fwiw despite diagnosis in his twenties he has been largely unaffected the last 20 years. Our aunt ( not his mum, also scottish ) also had it but lived very actively and died of a totally unrelated illness in her 60s.

Hi @Rollonspring11

My scan was clear. I had one in my head and neck. After I found out it was clear my symptoms did go away.

Wishing you all the best with your scan

Thanks Hellohellohi- I am so grateful for discussion forums like this as it helps so much being able to talk to folk

I have RRMS, live on the south coast of England. Vit d levels are often low in MS patients, but there are so many other factors too, such as Epstein-Barr Virus, genetics, although MS is not thought to be hereditary, environmental factors etc. Hopefully, it won’t be MS, but if it is, their is nothing you have done to cause it.

I was dx in 2012, I have chosen to take disease modifying therapy, and my last lot of MRI scans showed no new lesions in my brain or spinal cord.

It certainly is a journey, I have accepted that I have MS, but it does not define me. I don’t look to far into the future I am fortunate to have an excellent Neurologist keeping me as well as he can for as long as he can. Whilst no one wants a dx of MS, there are now lots of treatments available and hopefully one day a cure.

I know how scared you must feel at the moment, I was in your shoes 8 years ago. Good luck OP, wishing you all the best.

I went through the testing just over a year ago. It is scary, and I'm sorry you're going through it.

I don't have MS, I have a different type of neurological disease so I can't help with MS specific questions. I can assure you that whilst having a neurological disease can be exhausting, painful and debilitating, it is possible to adapt and live a fulfilling life. I have recently returned to work in a career I love, I'm in a happy new relationship with someone who totally accepts me as I am and is loving and supportive, I am raising two gorgeous kids who live their best life despite my illness. I get tired, I mainline codeine, but I'm happy and fulfilled. I have found my power in campaigning for disabled rights and inclusion in small everyday ways. I still spend too much time lurking on mumsnet

These tests are the key to unlock a treatment plan and support for you. Whatever the outcome, you are going to be ok

Hi, sorry to hear you're going through this, I'm currently awaiting a neurology appointment which is scheduled for next month as my gp suspects ms, I had a private MRI because I was desperate for answers, problem with that is I now have a report and pictures I don't understand, but hopefully it will speed up the process, I do know it picked up 3 issues, lesions which may or may not be ms, an empty sella which could be something or nothing and a bulging disc in my neck, I'm hoping that's the main cause of my problems, I joined ms UK group on Facebook add everyone on there is really supportive and helpful although it can be depressing reading at times. I'm in Leeds btw.

Thank you so much for the replies.
I would be so angry with myself if I have let stress trigger it due to some horrible folk that were in my life. If this is the case, I’m just so frustrated.
But from reading about it, there are many factors such as the vit d thing and diet.
If it is MS, the only blessing in disguise will be that it’s forced me to be fitter as I’m planning to eg take a couple of exercise classes and have already improved my diet majorly in the last week.
I am slim but was actually unfit due to not following a good diet and exercise. I don’t smoke or drink though

OP, I’ve been where you are and I know how terrifying it is. My worst fears came true, but I hope it helps you to know that ten years later I manage my symptoms by triathlon training. Not how I expected my life would be when I was first diagnosed!

You seem to be quite concerned with looking for causes with which to blame yourself (apologies if I’m wrong, that’s just the impression I’m getting). The cause isn’t known, there are factors like Vit D etc which appear to be linked, but nothing has been proven to have a causal, rather than correlating link. Stop looking for ways to blame yourself, it won’t help a bit.

What you can do if it is MS, is put your thoughts into managing symptoms - stretching and strength work in short daily doses are very effective, and if you have fatigue as a symptom, ask for an Occupational Therapist referral as soon as you’re diagnosed. The OTs have changed my life. An MS physio referral early on is a good idea too, get on their books so that if you get a problem later on you can be seen quickly and start the recovery process fast.

It’s a massive adjustment, and the mourning for your old life and expectations can be hard. But I don’t just “cope”, I enjoy my life. It may not feel like much comfort right now, but you can too. Good luck, I know it’s scary.

Laloba...thanks you’re right! I am looking for causes. I just need to get on with it. I am so impressed re your triathlon training, that’s amazing! As I say, I’ve majorly improved my diet in the last week and have booked into an ( easy) exercise class tomorrow!
I’m really grateful for all the positive stories on here. I felt so upset and helpless the other night as the discussion at the appointment was such a shock

@FeedMeChoc

Just to clear a couple of things up. HSCT is about £40k. In 2 places the only requirement is that you have MS and your EDSS is under 6.5.

The trials they have run in the UK do require you to have tried and failed 2 DMD's.

I had HSCT (the stem cell treatment some have mentioned) 3 years ago and it's the best thing I've ever done. Heat sensitivity and fatigue are gone. Balance is better. Everything is better.

This must have been the treatment your friend had @Casino218

HoverBeep- could you please give me the locations who do this therapy. Thanks!x

Mexico - Dr Ruiz & Dr Gomez
Russia - Dr Fedorenko - Look for interviews and articles he has done.

I was diagnosed 21 years ago. I work full time and walk 8k steps per day on average. You would never know I've got it unless I chose to tell you. I've never been prescribed any medication. I'm in Yorkshire.

What age are you op?

I have MS it’s not the end of the world, honestly, but wait for a diagnosis before worrying

Bluesheep- I’m early 40’s. One reason I was so devastated re the discussion was because I thougt MS was usually diagnosed in much older people.
It would be interesting to know what ages people on here were diagnosed if that’s ok? Am I young for this if this is the case? Thanks x

It's definitely not the end of the world. And as for the various types of MS, I firmly believe that there are the exact same number of 'types' as there are people who have it. MS is unique to each individual.

I was 32

Male friends - 27 & 35
Female friends - 28, 23, 41,36

rollonspring it's more commonly diagnosed in younger people, usually between the ages of 25 and 40. I was 25. What are the symptoms that have led to the tests? My first symptom was optic neuritis.

Can be diagnosed at all ages but mainly younger adults I think.

Try to distract yourself from worrying for now if you can. You don’t have any diagnosis at the moment and other things (e.g. stress) can have similar symptoms to MS.

OP, children can be diagnosed with MS as well. You're not young for this, IF you have it then look at it that you've had many MS-free years and that there are so many more options for treatment and support now than there were.

I really would wait for the diagnosis though but I see you're looking at stem-cell treatment options already? It's not good for you to get yourself into a lather before you even know that you have it. Stress helps nobody ever.

Do they diagnose just from a scan nowadays? My diagnosis was via MRI scan followed by a lumbar puncture.