I've just had enough

Primary progressive MS
1

Not even diagnosed but should find out soon.

I just think my age 36 is against me and also my luck. I’ve always had to bear the brunt of things in our family. I’ve lost three family members in 7 years now this.

No relapses I know of just on and off symptoms for 6 weeks. Lots of little symptoms lasting a few hours to minutes

Pins and needles
Lump in my throat trouble swallowing
Funny bone feeling in left elbow
Right ear went muffled
Cramp left leg
Cramp right leg
Face pain in cheek
Pin prick sensations
Dizziness
Brain fog
Sight fuzzy
Mood swings
Dry mouth
Tinntiuts
Back pain
The list goes on and on.

I have a bleeding polyp they won’t remove. Not MS related

All come and go except dizziness. No major relapse like losing vision so can’t be RRMS

I feel like it’s bad. So much symptoms in so little time. My body has betrayed me and I betrayed it after a lot of stress

I’ve given up hope it was something minor. Or even RRMS. Thinking I’d get some remission some respite or whatever.

There’s no good outlook with ppms it’s oh you’re on your own. I’ve read terrible end of life life. I remember the news on Andrew Colgan who went to dignitas as his progression was so severe in 9, years aged 42.

We don’t have any good DMT to give you. Moderate effective Ocrevus.

I’m constantly in a state of emotions.

I’ve tried to be so optimistic. I’ve told my GP I’m not well even reception know who I am as they ask me if I’m OK before I give them my name.

I’m not, I’m 36 I’ve a family. A job that we rely on and if something happens to me that’s it. No way to pay off mortgage, I’ve only really been working 8 years so bugger all money in the pot.

I’m working from home but can’t face going back.

All too much for me. Even with counselling and reaching out.

So sorry this isn’t positive posting. I’m venting.

2

Catastrophic outlook I know. I’ve no idea what it means to live with PPMS. I can’t speak first hand so if I’ve offended I am sorry. I keep trying everything I can to rationalise this.

But it’s just too much. I’m a broken man.

I love my family but the one person who was my sole confident in this type of thing is not here with me anymore.

I don’t think people know what it’s like and I’ve explained. Someone said you need a shrink you’re fine… I crumpled at those words. I’m on my own in this.

3

Dear Ryan,
My heart goes out to you. You have certainly had many heartaches and now waiting for a diagnosis.
I recommend you go to www.trypraying.org website. There you will see a booklet written for people who do not go to church. It’s a 7 day prayer guide. About everyday people and how their prayers were answered.
And their lives changed considerably.
Don’t despair Ryan .There is hope. :rainbow:

4

Hello Ryan,oh sweetheart I really do feel for you.

Your emotions are all over the pane, aren’t they?
Ok, how can I try to help you?

You do right to vent…we dont judge here…just support each other best we can.

It’s a scary time…been there mesen chuck!

I’ve had PPMS 25 years…I’m still here…sense of humour still ok.

I am 69, retired at 47 as lost my mobility quite early on. I have great help from hubby of 50 years, carers and family.

So sad that you have lost 3 family members…very sorry about that.

Lumps in throats is sometimes caused by upset emotions…ENT doc told me that when I lost my mum and dad just 3 weeks apart.

Have you applied for PIP? You can get that whilst working. Having no diagnosis wont go against you…symptoms and difficulties and help required are more of an issue in PIP claims.

A finally word…there are hundreds, if not thousands of us living decent lives with PPMS.I PROMISE you,it hardly ends up with Dignitas.

I bless you and your family.
Boudica xx

1 Like