Forum

PPMS Diagnosis Yesterday

This is my first post on the Forum, although I’ve been following threads over the past few weeks. It’s been quite a fast journey for me since I started struggling with my walking in April this year. I’m lucky to be in a medical scheme at work so my tests and MRI scans have all been completed since July. From my first meeting with the neuro consultant, I knew MS was a possibility but the LP results confirmed what the scans suggested. Got the news last night and even though I suspected it was going to be MS, it’s still a shock and I’m wondering how life is going to change. I’m 46 and still managing to work each day. What support is out there and what should I be doing in the first few days?

Hiya,

I’m sorry to hear your news that you have joined the specials of the specials. With PPMS there’s not a lot the medical profession can do at present. DMDs reduce the number of attacks but with PPMS you don’t get attacks so therefore no point.

There are many who get good results from a drug called Low Dose Neltrexone; see http://www.ldnresearchtrust.com/

I think I am PPMS; I was diagnosed in 1973 went downhill at a rapid rate till 1982 but since then have been on a plateau and remained the same.

If you need any help at or getting to and from work contact Get support in work if you have a disability or health condition (Access to Work) - GOV.UK plenty of help available.

Good luck my luv and welcome; you have joined a club that doesn’t want new members but that’s not life unfortunately.

G

Hi CW, I lurk around these here pages even though I don`t have MS…anymore.

Yeh sounds odd that I know, but I was mis-diagnosed with PPMS for 11 years! So I did join the forum and found a lot of support and friendliness…

I think the med profs are still out on what`s available for PPMSers. But some say help isnt that far away.

It`s great to hear you are still working and managing ok.

if your mobility should become difficult, then think about applying for PIP…a non means tested benefit to keep us mobile in one form or another. It can be claimed whilst working.

Another thing to remember is that you can have an assessment from an Occupational Therapist, to check around your home for things which help you in day to day living and also keep you safer from falls etc.

In your first few weeks, you may be hit by all sorts of emotions and questions? The MS society offer a wide range of literature to help you understand what is going on. Have a look and see if any of the look helpful.

You may be able to contact your local MS nurse for any other queries you might have too.

Give yourself time to digest whats happened and dont ever beat yourself up for having bad days. You are entitled to that!

Have a look at the PPMS boards.they are a fab set of guys and gals!

luv Pollx

l have had PPMS for 32yrs. l take a high dose vitamin d3 and b12 - plus l take LDN - this helps enormously with fatigue - and as it boosts endorphins keeps me a happier bunny - more able to cope with ms symptoms. Most people do say l am a very ‘positive’ person - and l thank the LDN for this.

Many thanks for your suggestions and advice. It’s still very early days for me and I’ve a lot to take on board. Having said that it’s early days, in reality I think I’ve probably had MS for quite some time - maybe months, maybe years - but I haven’t really noticed it until 2014. Occasional trips or wobbles were laughed off as being another year older, or being unfit. I went downhill really quickly in May/June and have been about the same since then.

Using Baclofen since August and have just started with physio - both seem to be helping a little. It’s surprising how each day is different and I can be better one day, then really wobbly the next. Or better in the morning, then bad in the afternoon. I’ve been booked in for some IV steroid treatment in a couple of weeks but the consultant isn’t too optimistic. So we’ll see what happens and I’ll let everyone know whether it’s helped. MS isn’t what I was expecting at the start of the year - I’m just an ordinary bloke with a wife and kids. Again, I appreciate the feedback you guys have given me - thank you

Hi

sorry to hear of the dx. Some good advice given so far.

im not being nosey, but do you have critical illness cover on a mortgage as many find that a dx of MS is covered by these companies. It can really help with the stresses & strains of ms.

another thing I would say is to listen to your body and to rest when it tells you to.

all the best

neil

Hi Neil

I appreciate your thoughts and I’ll look into the mortgage. The point about listening to your body is a good one as I’m finding some days are more difficult than others, both in terms of tiredness and moving about. I’ve been fully on the go with work and family for so many years that it will be strange to step back a bit, but I know I’m going to need more rest at times.

It really amazes me - and everyone that’s been watching me at work - how quickly my walking has deteriorated since May. But I’m determined to stay positive and keep living my life as fully as I can, for as long as I can.

All the best to you too.