Newly diagnosed with MS

[georgilly]

Just diagnosed with MS. Kids are 9 yrs and 11 yrs. Feel quite daunted by continuing to be an amazing mum whilst adapting to life with a compromised body.

Any advice would be really appreciated...

try www.msrc.co.uk

Also www.disabledparents.co.uk and www.youngcarers.co.uk Contact your council disability unit of social services - they are legally obliged to help youdo what you would have done if you weren't a Magnificent Specimen MSer

There was someone else on here recently...

Georgilly - sorry to hear of your diagnosis

do get all that you are entitled to blue badge, DLA etc - and I would advise using every facility available - e.g. get a perching stool for the kitchen instead of wasting energy standing up whilst you do the dinner etc

when DH was diagnosed we went through an awful time - it was like a bereavement - losing the "perfect" family future we thought we were going to have - but we adjusted our expectations and soon realised that nobody has a perfect life - we live life to the full now and appreciate and enjoy every day as much as we can. DH's MS was very aggressive but we have been pleasantly surprised at how well he is getting on. You may meet and talk to other people who have MS but please remember that THEIR MS is not YOUR MS - that nobody knows what will happen but you shouldn't expect your disease to follow the same pattern as others. Whilst online forums and support groups can be great for practical advice they are often most frequented by people whose MS has progressed quite along way - there are many people out there who are so busy getting on with life that they don't have time to join these groups and forums -

on a practical note I would advise on planning ahead in case you have a bad day - DH's ability to plan and think through logically is impaired on his bad days so it's much easier to have things planned out

• speak to your DC's school to advise them so that you can park on school grounds at pick up/drop off time if you need to
• keep cool in summer - get air con in your car and pace yourself in warm weather

at the moment people will be shocked and saddened for you - they will offer to help - accept that help now - you may be able to do things yourself but why waste the energy doing the dull things in life?

have you got an MS nurse? are you under a hospital for your MS? have they mentioned any particular treatments yet?

WOW! Thank you for your responses. At the moment I feel bewildered and isolated among many other emotions.......!

I have been allocated an MS nurse and I've seen her once, her mobile phone contact number is now saved into my mobile phone, I feel confident that I can contact her if I need to.

The hospital consultant was particularly intimidating and bombarded me with percentages and statistics which would make a mathmatician quiver! Due to see him again next month....Before any treatment, my condition is to be observed over time.

Your replies are amazing. Thank you.x

The consultant probably won't tell you about LDN (Low Dose Naltrexone) or nutritional therapy which are both widely used in USA. You'll get info from MSRC if wanted. I've found it very useful and very expensive, but agree with bluepills^, that's my MS.

Hi georgilly, I too have recently been diagnosed with MS, so I know exactly how you feel. Sorry to hear your consultant wasn't very easy to talk to. I think I've been lucky in that mine was pretty personable, but I haven't seen the MS team yet (next week). In the meantime, I bought a copy of Judy Graham's Managing Multiple Sclerosis Naturally, because it has quite a good overview of theories about MS, and all the alternative therapies that people have tried.

I'm not normally an 'alternative' kind of gal, but then I've never had a serious health problem, so I want to arm myself with knowledge and not get bullied into any treatments I don't want. Not sure how I feel about DMDs, as they don't appear to be terribly effective. Re the book - be warned - there are tons of different diets/strategies in it, and it can make you feel a bit overwhelmed, but if you feel able to pick and choose what seems to make sense to you, you might find little things you can do to feel a bit more in control of things.

I have been looking into LDN (and helminth therapy also sounds interesting), although I've no idea yet whether my GP would help me with a prescription.

I know what you mean about worrying about not being the parent you want to be - it's horrible isn't it? bluepill's advice sounds good. We just need to get used to a new set of rules. I feel much more positive on days when my symptoms aren't too bad, then you have a rubbish day and it all becomes pretty depressing and harder to see the future in a good light.

I have been looking at the MSRC website, which is amazingly interesting (for MS eees) and full of lots of the answers to the questions that are going through my head. Just ordered from amazon a copy of the book that ihearthuckabees recommended.

Thank you for your advice. I feel kind of empowered for the first time in months.....!

Try

ldnresearchtrust.org

[email protected]
£30 consultation, prescription £15

www.dicksonchemist.co.uk

Hope that's useful

Thanks Alice - I'd heard about Dicksons chemist. Do you mind me asking, do you use LDN, or have any feedback from anyone who does?

Sorry for hijack OP.

Sorry to hear of your diagnosis, it can seem overwhelming. My DH was diagnosed last year and we are still trying to find our feet and come to terms with it all. The good news is that although it has changed our lives, we are doing our best to get on with it and the children seem to take it all in their stride.

thelittlebluepills has given some excellent advice.

dear georgilly, sorry to hear your news. I have ms - diagnosed 11 years ago. forgive me for taking a short cut (I am working) but take a look at what I wrote here. take care.

Yes, Hatwoman, the MS nurses are invaluable, but vulnerable to cuts. I've found the responsibility for sorting everything out ourselves is the most stressful aspect and of course, you don't know what there is to be sorted out. I'm on LDN; ldnresearchtrust ^ will advise. You're lucky if you can get it on NHS, I just paid £150 for 3 months. Loving that private health care....

georgilly - just seen this. Like others I as diagnosed some time ago (six years) and have in the last two had challenging symptoms but I remember well the confusion and panic at diagnosis time.

Heard someone talking with Libby Purves on Wednesday about his MS (everyone is so different and this is one of the many trials). Will give you link if you want...

Anyway take care and there are a lot of supportive people (with extremely comfy shoulders and listening ears) here when you need them.

Xx

I joined e-med for £20 which lasts a year (£1.66 per month) and a prescription for 3 months costs £15 from the e-med doctors.

The Dicksons Pharmacy in Glasgow change £17.50 for liquid each month (x3 months = £52.50).

Total cost for 3 months is: £67.50 or £22.50 per month (excluding the annual £20 fee).

I can't yet say if LDN works though as I've only just ordered it. I have heard really good reports about it though so I am hoping for the best!

Good luck to you too.