Thought people might be interested in this link, received by me from the MS Register.
Personal Independence Payment (PIP) is the new disability benefit that is replacing Disability Living Allowance (DLA) and they want to know more about how it’s affecting people with MS. They are particularly looking at the new 20 metre criteria for mobility support which means fewer people are receiving the highest rate.
Take the survey http://go.newvistalive.com/start/?jn=P18373&dS=1
They want to hear experiences from anyone currently navigating the PIP process or who is still on DLA, no matter what stage you are at. It should take around 20 minutes to complete and your responses will help the MS Society campaign for change across the whole of the UK.
The survey is being run by ICM Unlimited on behalf of the MS Society. So, if you have any questions about the survey please email the ICM Unlimited Research Team at firstname.lastname@example.org.
Your feedback will be completely confidential, and individual responses will not be attributable or made available to the MS Society, unless you give your specific consent.
You might receive an invite to this survey again, if you’re a member of the UK MS Society Campaigns Community or Shift MS but you only need to complete it once. Your views and experiences will help the MS Society call for a welfare system that makes sense for people with MS.
If you feel you need advice or support relating to issues raised in this survey you can contact the MS Society helpline on: 0808 800 8000 or via email: email@example.com.
MARINA ASKED (via the mailing list):
What difference would having a definite dx make to those of you (like me) who are still without a definite dx (as tests etc are still inconclusive etc)?
Or, what difference did it make to those of you who have had a definite dx?
How does having a dx help (given that there is no cure) and what does it change?
To what extent does it matter if one knows for sure or not? If it does matter, what makes it matter?
What medication are you all taking and for what symptoms? Are they actually working for you?
I am taking :
Baclofen = Spasms, I found they took a while to start working and i have had to have maximum dose to get any benifit out of them but yes they are helping me loads..
Deazepam= spasms and anxiety, I started on a high dose when all my symptoms started but ive managed to come off them and just take these when my symptoms flare up.. yes they do work but wouldnt want to become reliant on them..
Tramodol= for the pain, they work great for me as they are the only pain killer that actually work when pain gets really bad.
Antibiotics= perminant for bladder/kidney infections
Sleeping pills as required ....
I thought I'd start a thread for all those things that we've had to learn by experience, to help those just being diagnosed. There's loads of info out there about the disease and symptoms themselves, but many of the "side issues" get missed until it's too late and they've reared their ugly heads. Perhaps if we make a list we can save others the grief!
I'll set the ball rolling with:
1. Teeth and gums.
I avoided the dentist for years through fear, and by the time I finally got it together to go, I found I had chronic periodontal (gum and jawbone) disease. Whilst this hasn't been helped by smoking, I've since become aware that nearly everyone I know who has had MS for a while has either crumbling teeth or rotten gums, or even both.
I've had to see my dentist twice over my week off work this week after a terrified Great Dane pup (I work in breed rescue in my spare time) managed to clout my already shaky front teeth, nigh on knocking one out and cracking the other. This led to an infection (we'll move onto those in a minute), and we're now fighting to try and save the teeth.
Obviously most of you don't run around after Great Danes as a hobby (and believe me, even an 8 month old Dane can cause damage, being the size of a large Labrador), but in the course of the aftermath I got talking to my dentist and his nurse about why there should be a link to MS and dodgy gnashers.
He said he'd noticed the same, and that all his MS patients in this boat have the same problem - we clamp our jaws shut or grind our teeth at night involuntarily. That makes sense because I know I do it, I woke up just this morning clamped solid with a spasm down one side of my face!
Anyhow, that results in one of two things happening. Those people with poor teeth but good structure behind them end up with crumbling enamel and the problems that brings. Those of us with shit hot teeth (like me, not a filling in my head) but weak gums will find that the pressure wiggles their teeth about, encouraging gum disease, and the whole cycle starts from that angle instead. Obviously any difficulties maintaining scrupulous dental hygiene - so people like me with tremors who can't floss, for example, or neuralgias in their face which makes proper brushing unbearable some days, which is me again - will simply compound things.
So what can we do about all this? Obviously it's a bit late for some of us, but even then you need to bite the bullet, get past the fear, and find a really GOOD dentist who's MS aware and can work with you. Explain the concern, and get him or her to keep a really close eye on the wear to your teeth and let you know as SOON as there is any sign of grinding or clamping - remember, you won't know to start with. Then get him to make you a soft splint to wear at night to avoid as much damage as possible - mine's doing that for me as soon as we know whether my front teeth can be saved or not. Also, get your normal cleaning done every 3 months instead of every 6, to keep your mouth as healthy as possible and give it every chance of coping.
I'm very lucky, my dentist works with my MS and the pain it causes me in my face, and keeps a very tight watch on infection - he even sends me away with an emergency supply of antibiotics to keep in the lorry for when I'm away and an infection flares but I can't get straight back to see him. I'll happily recommend to anyone else on Teesside, just drop me a PM.
I know going to the dentist isn't nice, but trust me, trying to sort the mess out retrospectively is agony!
Following on from the above, whilst we all pretty much know that UTIs and chest infections can be a real cause of symptom flare in MS - for Relapsers and Progressives alike -don't forget that ALL infections have the same effect. They raise your body temperature, drain your energy, and make your MS act up really quite suddenly. This is particularly important for us Progressives to remember - we know we don't relapse, so if we suddenly wake up feeling like hell the chances are that's what's going on.
A perfect illustration of this has been me this week. Teeth got "dogged" on Good Friday, by Tuesday my MS was flaring so I knew there was an infection. Started antibiotics that day, felt better for a bit, but woke up this morning (Friday) feeling dire again, and the dentist confirmed the infection had flared again. Antibiotic dose raised, and by this afternoon things are beginning to settle. It really can have that sudden an effect!
On the plus side, I know my MS welll enough now that IT tends to tell me when I'm ill rather than the other way around, so I'm able to get infections stomped on much earlier (hence my fab dentist sending me away with spare antibiotics). I've been known to get "that" feeling at a weekend, where I just know a cough has turned into an infection, and have seen the out of hours service (doctors or dental) to get drugs ASAP. Make sure you TELL them you have MS andthe infection is causing a flare which could result in permanent damage if not jumped on quick. DON'T allow them to fob you off, make it clear that if they get it wrong, you could end up with progression that can't be reversed. Ok, so some viral infections can't be treated with antibiotics, but I have all my primary care types - GPs, nurses, and dentist - trained now to understand that it's not worth "watch and wait", and they just give me the damn meds.
Again, given time, you'll learn the different ways that viral and bacterial infections effect you, so you'll be able to tell the difference and know when to get help, but you can only learn this through over-careful trial and error. Even I don't always get it right straight away (as Cara will tell you,having been privy to the "3 weeks with pneumonia and nearly ended up in hospital" fiasco, through Facebook last November...Ahem...), but it's all part of educating ourselves about our own unique brand of this disease, and vital in making our lives as easy to cope with as possible. And that, I think at least, is half the battle.
Ok, someone else's turn....
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