MS Advice

[Stormandrain]

Please can someone help. I have a family member who is going for a scan. Consultant thinks MS is diagnosis but needs a scan to confirm.
They need support and I don’t know what to say
Does anyone know some positive stories re people with MS. Thank you

I'm sorry to hear this and it must be a scary time... but there are positive stories - take a look here for instance:

overcomingms.org/

My partner was diagnosed with MS at 26 (6 years ago now). The MS Trust is amazing. There is lots of information & support available from them for both the person diagnosed & the family.

It is tough getting the diagnosis & it does take time to get your head around but you have to remember (& we remind ourselves on harder days) that it's not a life sentence.

Please feel free to PM me if you want to talk or ask anything. I'll do my best to advise / support.

I'd also like to add - my maternal grandmother also has MS. She was diagnosed years & years ago (before I was born). She is now 82. She's lived a very good life. She's still gone on holidays even when completely dependant on a wheelchair, until recently when age related illnesses began she still went out shopping & day trips. Medication, support & research has come such a long way since she was first diagnosed that it holds hope on how much more it will continue to develop in the future.

Thank you I am so grateful. The Diet looks amazing from the information the first poster put up.
HaveeeeYouMetTed- is it possible to pretty much lead a normal life then if you change your diet and take your meds, and maybe increase exercise too? This would give a lot of hope

There are two types of MS. My partner has relapsing & remitting MS. So he has replases where one morning he may wake up & can't move his leg. But it will slowly get better although always runs the risk of it never being completely back to normal.
He has constant pins & needles in his hands, balance issues sometimes & tinnitus. He also suffers sometimes from fatigue.
He started a new medication about a year ago & since then has (touch wood) had no relapses. Finding the right medication is a bit of trial & error but there is so much support offered by the specialists. Most (if not all) medication comes with side effects. This is something my partner found hard to deal with as it just felt so unfair that you take a med to stop one thing but run the risk of damaging something else.
Since being diagnosed he's continued driving, changed career & is now an assistant manager, he's become a (good) parent & is currently training for a big run raising money for MS Trust as well as playing football twice a week.

Sorry for the wall of text. Please feel free if you need to ask anything else or for me to explain anything better

MetTed - thank you. That is so reassuring to hear he plays football etc. Could I ask what the new med is that he has tried. Thanks.
I’ll be honest, I am really scared re all this

He's now on Tysabri (has been on Avonex in the past). It's a monthly infusion that he has in hospital. He has other checks every few months (blood tests) because of the side effects of the treatment but he's definitely seen a difference since being on it.

It is scary, terryfing. I still & probably always will remember the day he got diagnosed so clearly. I think it takes months, if not years, to really get your head around & there are still times when it hits him. But generally, life just continues daily. I don't know how close of a relative to you is going through this but it doesn't mean life as you / they know it is over. Some changes probably have to be made (I'm more conscious not to plan too many activities on all his days off with our toddler because I know he may need just a completely rested day to recover from a working week) but generally you adapt & it just becomes part of every day life.
There is a lot of support out there for relatives also.

My mum has MS - she was diagnosed when I was 6 (I'm 33 now) although she believes she had it many years previously.

I'm not going to lie, it can be very scary. She really is quite disabled now, she uses a wheelchair full time, is hoisted into chairs (cant walk or stand) but I will say it took around 20 years for her to get to this stage. For most of my childhood she was relatively okay. Shes deteriorated a lot in the last 10 years.

There are different types of MS - my mum would be described as having the 'worst' type but many people live a long time, managing it. I think because I've grown up with it, I'm very used to it but it can be very scary and shock - especially when a relapse happens. But lots of people live really quite well for many years before really deteriorating

I have it. I'm still working, parenting, walking and driving. It's tricky at times and I do have moments of fear but there is research, support and medication once you have a diagnosis. Your mind jumps to wheelchairs and paralysis but it doesn't necessarily mean that.

I was diagnosed 20 years ago and am very well, there are a lot of new meds available and research is ongoing. It is a very scary diagnosis though and it takes time to come around to it. Good luck

Just one thing though, when I was diagnosed, a lot of people tried to make me feel better by listing the people they knew who had it and were doing well. It didn't help, I was too scared, and just had to get through it in my own way. It takes time

My Mum has MS, primary progressive so the ‘worst type’ out of the 3 but she has some other major health issues so it’s not fair to say everything has been caused by MS. There are a lot of snake oil style ‘treatments’ aimed at people with MS.

A close relative was diagnosed with it about 25 years ago. Since then they’ve travelled the world, worked in various demanding jobs, had 2 kids, done every other vigorous exercise going and they are absolutely fine. No repeat episodes since the initial episodes which caused them to go to the doctors and get diagnosed in the first place. No meds, no special diet or anything. They were obviously very worried when first diagnosed as no one knows what path MS will follow, but it doesn’t always have severe symptoms. Hope your relative is similarly lucky if it proves to by MS and not some other cause.

My grandad had MS. He was diagnosed years and years ago. Towards the end of his life he did have trouble walking but he lived until a few years ago. He was 93

I had HSCT - 3 years ago. Halted the MS. I still have some old damage (no new) and wish I'd done it a year or two earlier.

Could you tell me more about HSCT- thank you so much

Bluebasket- was that in the uk? Thanks
This is all a shock and I’m worried

I did in in Mexico. Great clinic, they do it for 30+ people a month. Smooth and top notch doctors. You'll have to google as I can't put links on here, just google 'MS HSCT Mexico'. Russia is also good, the doctor there, Fedorenko, is a bit of a legend and he's done lots of articles and interviews about it.

HSCT is basically they give you 4 treatments of low dose chemotherapy, just enough to kill your immune system. MS is an auto-immune problem, so it kills the faulty system. They take your own stem cells, so theres no chance of rejection, and after the chemo they put them back in to kickstart your new MS free immune system.

Unfortunately it's not a first line treatment yet in the UK. It probably will be in the next few years but for now it isn't.

The aim is to stop/halt the MS. If any old damage gets better (it did in my case) then that's a bonus, but the aim is to stop it. So the earlier the better.

Most people fundraise. Lots of people in the UK do, have a google. There's a few of us on here that have done it/are doing it.