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Life-limiting illness

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Original poster

Just been flag owed with ms.

9 replies

knewme · 05/02/2019 17:36

So today I finally got a diagnosis... ms. I have the relapsing dismissive type which isn't so bad. Feeling totally numb about it all, don't know what to think or feel.

Does anyone else have this and can offer advice or experience?

OP posts:

ScreamingValenta · 05/02/2019 20:20

No advice but and bumping thread for you.

TwitterQueen1 · 06/02/2019 10:32

Sorry to hear this OP. My DC's friend was diagnosed about 25+ years ago. Today (in her fifties) she spends all her time running marathons! She's fitter and healthier than most others of a similar age. I'm sure you will find ways to manage this too .

Original poster

knewme · 06/02/2019 11:18

Thanks for your replies! Just reading this back today half of it doesn't make sense sorry about that! My mind was obviously distracted and I didn't spell check!

I think alot of people get a fright and it kicks them into being healthier. Hopefully I follow through on that too. With hypermobility it defo won't be running marathons though or I'll be in a wheelchair with dislocated knees instead of ms lol

Feeling more upbeat today and less defeated. Just overwhelmed trying to decide on treatment options... there's so many!

Thanks to both of you for taking the time to reply though

OP posts:

ScreamingValenta · 06/02/2019 22:14

I'm glad to hear you are feeling more upbeat today. Hopefully you will be able to find a form of exercise that's safe with hyper mobility. It sounds positive that you have many treatment options to choose from! I'm sure you will be able to find more support on MN from others living with MS once you start on a treatment plan.

motherlondon · 07/02/2019 11:01

I'm sorry you got a shit sandwich diagnosis.

I don't want to be all 'follow this miracle worker ' etc, but there's an incredible Australian dr who has MS and has made some remarkable progress with different lifestyle options.

Could be worth a look. He's inspirational if nothing else!

George Jelinek - overcomingms.org/about-oms/about-prof-jelinek/

nonetcurtains · 12/04/2019 14:46

Hi op
I have RRMS, dx in 2015.
There are lots of treatment options yes, but please understand there is no cure. You may get some relief from some of the symptoms for some time, you may get fewer relapses, talk to your MS nurse.
I have recently had the second round of Lemtrada - it's not all it's cracked up to be! However I'd rather have the treatment than face the possible effects of future relapses. If this is one of your options, google Dr Aaron Boster's talks.
I joined the forums on the MS Society's website, they're excellent for a 'newbie'. I haven't been there for about 18 months as I got a bit overwhelmed by it and had to stop, but please try them, there are a lot of very knowledgeable people willing to share their experiences.
Good luck x

Dizzywizz · 16/04/2019 21:19

Hi op, I’ve also got rrms, diagnosed 2006 i think but they think I had it since I was about 18, so about 2000. I hadn’t seen this thread before...have you made a decision on any treatment yet? What are they offering you? I have been on tysabri years but previous to that was on Rebif which I’m not sure they offer anymore. Tysabri has its risks but it has been amazing for me

IceBearRocks · 04/05/2019 17:51

DH has RRMS and was dx in 2007 he's 41 this year! He started out on rebif but found that it effected his skin and had no where to inject. Been in tecfidera for about 3 years and it's the best he's been. He keeps very healthy. We have a severely disabled boy and he helps loads but if he get too tired he gets wobbly legs!
MS is not a death sentence.xxx

Nat6999 · 20/05/2019 03:57

My ex husband has MS, was diagnosed 2003 after losing his eyesight driving to work. He was originally diagnosed with RRMS but now has Secondary Progressive MS. He had 6 attacks in the first 12 months he was diagnosed but was then put on Rebif 1a & his attacks were regular as clockwork every 14 months. He had a bad attack in 2010 & had plasma exchange treatment which was nothing short of miraculous, he had been admitted unable to walk & within 24 hours of his first exchange managed to walk the length of the ward. He went on Tysabri in 2011 but it didn't suit him & he was in hospital for 10 months & is now permanently in a wheelchair. With hindsight he should have stayed on Rebif 1a. They keep on offering so called wonder drugs where the short term results are brilliant but over the long term they aren't always as good as they look. Don't take everything the consultant says as gospel, do your own research, talk to patients in clinic & find out what treatments really offer the best quality of life, from what I have seen they don't seem to be offering Beta interferon treatment as much as they used to, but for many patients it was well tolerated with not too many side effects & gave a good quality of life.

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