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Mumsnetters aren't necessarily qualified to help with medical problems. If you have any serious concerns, we would urge you to consult your GP.

Introduction :)

(9 Posts)
fassbender Fri 03-Jul-15 10:18:02

Hi all, I just realised this board was here. I have MS and am struggling a lot mobility wise. I am just about to fill in the paperwork for PIP (any advice welcome) and am waiting on a call from the GP so I can see wheelchair services. I don't feel like I get a lot of support from medical staff so feel like I am doing it all on my own. I was diagnosed over 20 years ago, aged 15, but only started having problems a couple of years ago. So glad to have found this board!!smile

CrohnicallyAspie Fri 03-Jul-15 20:08:44

Can I ask how you were diagnosed if you haven't been having any problems until recently?

I'm wondering because I am at risk of MS- evidence if lesions on MRI- but they won't make the official diagnosis unless I start having problems.

For PIP paperwork, I'm sure one of the MS charities will have specific advice, but remember to detail your worst days and how often you have bad/better days (I'm sure I remember reading to avoid 'good'!). And remember they're looking at how reliably you can do things so not just whether you can do it but whether you can repeat it if necessary. If you technically could do something but it is painful, tiring, can only be done very slowly, or puts you at risk of injuring yourself then tell them that.

For example. On one of my better days (once or twice a week) I can walk 50m, but this tires me out and gives me pains in my legs so I need to rest for half an hour before I can walk again. On a bad day I can only walk 20m before needing to rest.

fassbender Fri 03-Jul-15 22:21:55

Thank you for the advice! I first had optic neuritis when I was 13, then numb legs for 2 weeks at 15 which was when I was diagnosed via MRI. I then had relapses over the next 20 years but they were really few and far between with no lasting problems. When I say my problems started 3 years ago, I meant my mobility problems - declining in the absence of relapses. I have just been referred to wheelchair services. Hope that is a bit clearer and thanks again for your advice!

fassbender Fri 03-Jul-15 22:23:55

I also meant to say that I hope that you DON'T end up having any further problems - it must be frustrating 'waiting' and not knowing.

CrohnicallyAspie Sat 04-Jul-15 06:47:48

Ah I see. Thank you for sharing that. My official diagnosis is CIS- I have had pins and needles for over 5 years now, and a couple of pseudo relapses but no real ones, I think the pins and needles are worse than when they started. Very minor in the grand scheme of things! I had a positive lumbar puncture though, and I'm on DMDs so hopefully that will prevent conversion to 'full' MS.

daizychain Sun 05-Jul-15 10:20:02

Hi I get PIP and would agree don't fill it in alone. If you have any specific questions ask away.

NotCitrus Sun 05-Jul-15 10:43:57

Hi, definitely get help with the form, and write all your answers on computer as you go so can add bits and have a backup, and because you only have 6 weeks to return the form which can reduce to 3 weeks because DWP post takes so long. And return the form recorded delivery (not being cynical - they claimed neither of my PIP forms had been returned until I mentioned they'd been marked as delivered by Royal Mail). Keep a diary for a couple weeks when you have a worse episode.

Having said that, I've never managed to return forms in time to claim DLA so am getting my first assessment next week. I'm told its like being cross-examined in court. Will see if they actually have managed to book the interpreter this time...

daizychain Sun 05-Jul-15 17:51:13

Also get all your health professionals to write reports so they get the full picture. My interview was fine. There are a lot of horror stories around about this but some are ok. It takes about 45 mins and a few little tests at the end (nothing to worry about). I also got their decision within 2 weeks so didn't have to wait for ages. If you don't get it you must appeal.

slippersmum Wed 29-Jul-15 09:39:53

How did you get on with your claim?

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