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

What lyingwitchin says is true. Whilst I was 25 when I was diagnosed,it turns out that a lot of odd symptoms I had as a child/young teenager could well have been to do with MS.

My first symptom was optic neuritis.

Me too.

Hi;

I was diagnosed in 2016 when I was 24, quite out of the blue really, following 3x MRIs and a lumbar puncture. I’m in Scotland, central belt.

I opted for Lemtrada treatment (available at some but not all hospital trusts) which I completed in November 2017. Relapse free (touch wood!) since then, and have since got married, moved across the country and have first baby bartering my insides just now (due in a few weeks).

It’s not the end of the world - treatment and care is SO good now a day’s. Life goes on, promise :-)

My first symptom was optic neuritis

In retrospect, it wasn't my first but it was the clincher and after that the diagnosis was a formality. I thought it was a brain tumour as over a few days my vision in one eye went greyer then blacker and gone. At least the crippling headache went when my eyesight had gone. It came back gradually over about a month. Optician picked up the 'pale disc' and referred me straight to hospital.

Previous to that I'd had what was dx'd as facial cellulitis (which it wasn't), it was labyrinthitis so severe that I was hospitalised. Prior to that, smell of burning (anosmia), inexplicable and intermittent.

I had a lumbar puncture too but according to my consultant, it's not always necessary.

My sister has MS. She was diagnosed about 10 years ago, I’ve always known it as “non degenerative MS” (though I know I have my terminology wrong). TBH, she’s got no worse over the last 10 year .. it’s just tiredness really that effects her - saying that, she moved to sunnier climes about 8 years ago, so I think that helps

MS is usually diagnosed in younger people, and more often in women. 25-35 would be typical but obviously some people aren't aware of the symptoms adding up until much later.

Dx 2.5 years ago.

Please don't think that having MS (if it is MS) is because of something you did, or didn't do. It really isn't and while most people with MS seem to have low vit D readings so do many other people. There also seems to be links to glandular fever - but not really proven.

I've know someone who was dx at 11 years old. Its effects all ages but is more common in women women than men, however men do seem to be more affected.

Wait for the results. If it is MS you will get support via your MS nurse who will talk you through DMD'S.

I've had Lemtrada treatment and so far I've been relapse and new lesions free.

Good luck !

I was outside the normal age range, at 45 when diagnosed. But I am very risk adverse and despite being offered lemtrada, I couldnt bring myself to go that route. A lovely MS nurse could see my fear and suggested plegridy, which I have now been on for over 3 years without an obvious relapse. fingers crossed it is working and continues to do so.

Thank you again for your replies. It’s such a relief to chat to people about this and realise I’m not the only one who has been in this situation. Thank god for forums such as this.
It’s so interesting to read people’s experiences and also re the drugs and treatments that are out there.
The lack of sunlight thing still interests me. It’s been the longest most horrible rainy stormy winter that I can remember and I didn’t go a sun holiday last year(well only for 3 days). And as I said my diet was rubbish. Not overweight or anything, just hardly any fruit and veg etc

I was dx aged 57, I'm 62 now.

The MS trust have produced a guide to all MS DMD’s it’s called MS decisions contains lots of info, I found it useful when deciding. I was 40 at DX.

Hello OP, I have MS. I was diagnosed at age 46, now 50. I had no prior warnings, lost the ability to walk over the course of a week and had no feeling from the chest down. I am more or less ok now. Some loss of feeling in my left hand still but I work, walk, drive. Pretty normal life. You would not know to look at me.

I live in Canada which apparently has the highest rate of MS in the world. First thing the neurologist did was put me on 4000 IU vitamin D a day!

I was offered copaxone right away but I didn't take it, I wish I had. I thought the initial relapse might have been a one-off since I had never had any prior symptoms, but then I had another relapse.

I wanted to tell you that it is not the end of the world. I went through a bit of a grieving period and now it is just what it is. I can't walk as far as I used to and I can't deal with the heat very well but otherwise life is pretty much the same as it was before.

Good luck.

RosieMapleLeaf - thank you for this. So basically after your initial symptoms, you kind of got better again and pretty much lead a normal life?
And if I am offered something like copaxone, I should take it?
Thank you. Still waiting a diagnosis but kind of feel I’m in the grieving period and then I’m determined to feel better xx

Rollon.
There are 3 main types of MS. With RRMS you have relapses. Generally after a relapse you should get back to 90% normal but sometimes residual effects remain. For example: go numb down one side - pins and needles feel may remain indefinitely. The relapses may be 20 years apart or 20 weeks apart - nobody knows.

Medication is a tough one as it's so personal. Some people will hit MS hard and fast - these have the best results in stopping or slowing down new lesions forming but they have the highest risk of fairly severe side effects. Others opt for less efficient medication but with much few risks of side effects.

@Rollonspring11, yes, I have the relapsing-remitting type so over the course of a few weeks the symptoms went away and I went back to almost normal.

You and your doctor will have to decide about meds. One thing about MS is that it is different for everyone, there's no right answer!

I've been on Gilenya now for almost two years with no issues. Before this I was on Tecfidera but my lymphocyte count went too low so I had to cone off it.

All I can do is hope that I made the right decision, hard to know if I did or. It but I'm stable on Gilenya so far ...

I was diagnosed with RRMS 21 years ago. My disease is now "behaving benignly" and my last relapse was in 2005. Everyone's MS is different and completely unique to them.

Bluesheep that’s great to hear. My scan is not for another 4 weeks approx so I’m now considering paying privately to have it sooner. Once I know exactly what it is, at least I can get a treatment plan sorted with the doctors. The stories here are very encouraging, I’m very grateful x

As I said I a previous post, I've never been prescribed any treatment and I know I'm very lucky. It used to be the case that a diagnosis wasn't made (even after an MRI scan) without the appearance of 3 separate symptoms but I don't know if that has changed. The only advice I can give is that if it does turn out to be MS, it's not the end of the world and it's YOUR MS. A part of you that will have been there for some time without you knowing. Luckily it came naturally to me to see it that way and this approach works for me, but I suppose every individual's way of coping is unique to them, like their MS.
Best wishes

Bluesheep thank you so much xx

Apologies I can’t sleep again. Have emailed for a private scan so will get this within a week. Anyone about? Feel a coward but I’m scared

How much are you paying for a private scan? I would honestly wait for the nhs one if I were you. Please try not to worry op. Apologies if you've already given this info, but what are the symptoms you're having that have led to the request for a scan? Have other things been tested for/ruled out?

Hi OP. I was diagnosed with MS at 39 in 2015. I thought at the time it was the worst thing but the reality is very different. Other than now regularly going to the gym and taking medication daily, my life hasn't really changed.

I have a good neuro which I think is important so that you can be informed in making any decision. Try not to worry too much (as previous posters have said - easier said than done!) but know that while it may be MS, it also may not.

I was diagnosed just with an MRI as my understanding is that a lumbar puncture is no longer necessary (am in Australia btw).

BlueSheep- it’s tingling/ numbness etc
When I had my consultation and pressed the neurologist he said MS is most likely diagnosis
My blood tests by GP were normal apart from low iron. He checked my B12 etc etc

Also- Private scan about £700 but I feel I can’t wait another month

I was diagnosed with RRMS in 2017 out of the blue. Was taken into hospital unwell and was given an mri there and then. I had had an MRI 10 years earlier and unbeknown to me it had been flagged at that point so they were able to diagnose straight away.

I know it’s hard but I would try to sit tight and put it out of your mind for the next month.

I’m on tecfidera, although may need to come off it soon as my white blood cell count is getting too low. I have always been active and so far this week have done 6 gym classes and 2 5mile walks! I do get tired sometimes and random weird symptoms but overall no one would know.