Just diagnosed with MS

[Dededum]

Thats it really, not a huge surprise (but I had just been struggling on so hadn't thought about it). DH in America till Saturday, parents in Scotland, kids at home so staying out of there way.

Feel tired, bit teary, a bit relieved that my inability to walk more than ten minutes isn't me being lazy or not determined enough. Just actually that I need to make some life style decisions. Never been ill really in my life, I used to love walking, used to walk all over London. Sad that won't be able to do that again, but happy that I did loads of adventrous stuff when I was younger.

Just wanted to write it down. Thanks for listening.

We are north facing so our patio is in shade for most of the day, so not too much sun and a lovely breeze.

Anyway I think the sun makes everything feel a bit surreal, just wandered about town with the boys for about an hour. Couldn't have done much more as the right hip was starting to ache.

Breeze sounds lovely. There's nothing here Take it easy.

naltd.co.uk/nutrition-associates/dr-downing/
This man is expensive but just about the only useful hcp I've seen
MS reduces life expectancy by approx. 7 years, so not very life limiting
best advice - be realistic about eg housing/stairs/hills etc which will be useable in 5 years worst case scenario

www.youngcarers.co.uk/
they have been useful :)

www.youngcarers.co.uk/

Thank you. Do you know if there's one in England?

specialist physiotherapy is VITAL
do not allow your joints/muscle fibres to knit up

all the links are England

Sorry. Isn't Dundee in Scotland?

i was diagnosed with RR MS in 92, it's become progressive over the last 7-8 years.
i spent a lot of time thinking about my diet, supplements,drugs to reduce my relapses.whilst those are useful, if i look back (i am now mainly chairbound) being linked with a rehab physiotherapist has been the most helpful intervention for me... keep what function you can for as long as you can.
the next most useful was reducing my stressfull job to pt and later retiring....i have less income but life is not all about getting ready for/recovering from work...i have energy to do things with my family

re the heat, look up chillows on amazon...i don't know how they work but they do

ime early specialist nhs physio is hard to access..but it is worth pushing for rather than having to play catch up with weakness/stiffness once they have set in

Dededum my family do know but you're right, I'm just trying too hard! I'm oldest of three and only one to have moved away and it's always been important to me that they think I'm the 'sorted' one! Glad you're enjoying the sun and having your OH back .

Lady I am in Nottingham so referred to QMC. Seeing Dr Lin on August 2nd. Have you come across her? Good to hear you've had a positive experience there. Any tips?!

I live just outside Nottingham. I haven't met Dr Lin, I've seen Professor Contantinescue (or something like that) and I saw 2 of his reges in April, they were great too. The MS nurses get things done so they need to be your first port of call if you need anything (including steroids).

www.carersuk.org/help-and-advice/directory-of-national-organisations/item/828-the-princess-royal-trust-for-young-carers

oops sorry

Hi everybody, just wanted to add that there are really good websites, official and unofficial (unofficial ones are usually better imo) on the internet. I think Msers tend to be very good in expressing themselves in a tech savvy community way. I like ms-uk.org (they were best for me when I needed them). shift.ms seem to be new, and are trying to raise the profile of ms.

Cant do links but they have two rather romantic videos on talking about ms

Thanks choculaits I'll have a look at ms-uk.org. I've looked at shift-ms and there's so good video clips about secondary progressive ms - are they the ones you mean? I felt a bit old on shift-ms (I'm 42)!

Im 51! I think in medicine, anything adult but under 65 (and not in maternity) makes you young, so its definitely for our age group. MS is the most common neurological condition and tipically (but not always, can affect children)kicks off in your 30's and 40's. Ive had it 20 years and its only now moved slowly to spms. Everyones progression is different, and the conditions vary a lot, but raising the profile has got to be a good thing.
Ive never had any meds(no steroids during attacks)and the newish disease modifiers wont work on me now , but I do use a fes for my foot drop, and am self medicating for lack of concentration and fatique. The videos im talking about are probably best seen on youtube . One is called gallop and the other is belong. (Try shift belong). Actually theres a lot on youtube. take care

I found acupuncture was a great help with the fatigue and nerve pain. It can be hard to find a good Chinese doctor.

that's worth knowing ladymary i wouldn't have thought of acupuncture for fatigue, only pain

Well with my new found diagnosis i am seeing the doctors tomorrow and asking for physio, seeing my massage therapist on Thursday ( she has really helped the stiffness over the last year) and having a 1 to 1 with my yoga teacher on Friday. Think I am going to have to stop my beloved hot yoga, as don't think it is doing me any good, and find a more gentle yoga class.

I never knew anything about MS or anybody who had MS (or so I thought) or anybody who had any sort of serious illness other than old age. Bit of a learning curve.

Gentle yoga and pilates is good. It will help to improve your core muscle strength.

I didn't know of anyone either but I've noticed a lot of hospital workers (nurses etc) with it. There's no one else in my family who has this and it is making me wonder.

dededum the MS Trust do a wide range of information booklets which you can read online/they will send free. wellwritten

ladymary another ex hospital worker here.

It's too hot!!!!

Stay indoors, eat lots of ice-cream and drink lots of wine fluids. It won't last. Ocado deliver if you're running low on food.