Forum

Bad times

Feeling so fed up now. I was diagnosed 10 years ago with rrms. It was diagnosed as aggressive so I was given chemo on a trial to slow things down a bit. It slowed the amount of relapses I had but disability progressed.

i don’t have relapses now just a lot more disability so I’m assuming it’s now ppms? Things have gone so bad and a year ago I had to change from driving manual to automatic and now to be assessed for an adapted vehicle.

im constantly falling over now and yesterday I fell flat on my face and broke my nose. I’m devastated!

I hate this life, it really sucks!

hi lisa

sorry to hear that you are so low.

if you HAVE gone progressive it will be secondary progressive.(spms)

primary progressive starts off bad and has a steady decline.

i’m rrms dx in 2008 and i just seem to be sliding downhill.

suppose it’s just a label and the real issue is that we feel sh*t.

do you still see your neuro? ms nurse?

maybe they could suggest something.

spms people are now having decent results with biotin (i think, but it’s very recent and the posts will still be on)

also LDN works wonders for some people.

hope your poor nose is healing well.

carole x

Oh Lisa, you poor thing and your poor nose.

As far as I am aware (and I maybe wrong) it is unusual to go from RRMS to PPMS. Like Carole says it is much more like to be Secondary Progressive, which is where I have now gone from original diagnosis 10 years ago of RRMS.

Have you got lots of grab rails etc in you home. You need to make yourself safe from falls. I too fall a lot and have grab rails everywhere in the bungalow.

If you do see a neuro/MS Nurse/physio then why don’t you ask what they can offer to help you?

Hope your poor nose gets better soon and I hope you get help with the way you are feeling at the moment.

(((Hugs))).

Shazzie xx

Hi Lisa same things happening to me, haven’t broke anything though, you are going through it, bless you. My RRMS diagnosis has recently been " updated" to SPMS, your right it does “suck”! I’m getting my head round it, slowly. You need to have an appointment with ms team, at least you will know where you are, worse not knowing you take care Tracey x

hi lisa

it is biotin that people with spms are finding helpful.

the post is from big dave and is just a few before this post.

take care love

carole x