Forum

Worried

Hi im currently in the process of being diagnosed and worried l will have PPMS due to my age im 68 this year and read that MS later in life is usually PPMS

Hello Kingsnorth , welcome to the forum. I’m still looking for answers myself , I’d heard similar . I’m 52 and have had symptoms for a long time . I’ve been a wheelchair user for 5 years but still have some mobility in my home. I have an assistance dog called Frazer to help me .The support and advice here is very good. Michelle and Frazer xx

Hello Kingsnorth.

I was given a PPMS diagnosis twenty six years ago but I carried on working until I was 58. I’m now 62 but I’m still functioning.

It is a condition; a source of worry, frustration and often disappointment because of what we can no longer do but a condition it is. I always say MS of any kind is a massive blundering bully but it has no brains. We have the brains and this brilliant forum. With and without help I’ve found ways around this wretched beast.

Best wishes.

Hello Kingsnorth,

Welcome to the forum, you’ll find some wonderful and amazing people on here.

I think the Americans have got it right as they call it the snowflake disease because we were all so different! I’ve had it since I was 14 and I’m now 66. Without doubt I am now very ill but I can still walk albeit very very slowly!

Hope to see you on here again in the meantime take care of yourself and hopefully it will be something other than MS.

Nina x

Hi Kingsnorth

Welcome to the forum, lovely helpful people here always willing to listen and offer advice when they can.

Look forward to seeing you on the forum, take care.

Pam x

Hi Kingsnorth,

Welcome to the forum :slight_smile:

You’ll find there’s lots of nice people on here male & female, young & old who can offer great support and advice.

Take Care

Twinkle Toes x

Hi and welcome.

I was diagnosed at 42 and I’ve just got a proper wheelchair five years on.

Sonia x

Thanks for all your support. Do you think the drug Oc (something or other) will help PPMS or whether nice will approvre it x

I think you probably mean Ocrevous - I’m hoping to discuss that with a neuro next month.

Sonia x

It may well help but I’m told it has seriously bad side effects.

The medication that helps me SO much is Biotin, it’s amazing and although I dont want to sound pushy but it’s without doubt the best thing I’ve taken,

Take Care,

Nina

I hope neuro can give you some positve feedback Sonia x

1 Like

Just a follow up. Im getting more symptoms now started with pins and needles in both legs and feet gp tested me for neuropathy and fibro which seemed fine went back 2 weeks later as pins needles spread to entire body overnight. Referral to neurologist. I had holiday booked so decided to go. Now charlie horses in calves and thighes muscle spasms in body jerking body when resting eye muscle spasms in both eyes and floaters. My legs feel very heavy. Im in spain until Saturday week. This must be PPMS and quite rapid. Im very scared now and in bed hoping l stop jerking

Hey, try not to panic. Some stuff can be down to the hot weather or a ton of other reasons for that matter but maybe note down this stuff.

When do you see your neuro next? There are some neurological painkillers available that can help with some of the odd sensations/mixed messages. I’m prescribed Pregabalin for daytime and Amitriptyline at night. If you’re not 100% diagnosed yet, it probably needs to be your neuro but if they’ve said MS then your GP can probably help you.

Sonia x