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What happens now?

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What happens now?
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stutd
10 Sep 2011 at 12:42PM
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Hi there,

Unfortunately just been diagnosed with MS - yesterday in fact. Kind of happy to know what it is, if a bit shell-shocked, but mostly a bit stumped as to what happens next. Diagnosed by a locum neurologist who, whilst being very nice, wasn't based in the UK and so not certain about what treatments I can get or who I see now. Fairly happy she's doing the necessary referrals but a bit nervous I might need to arrange something.

Just wondering if anyone has had any recent experience of being diagnosed and what happens next? Is there anything I need to do, or does the NHS machine do all the work for me? Was planning on a trip to the GP just to be certain.

Any advice greatly received.

Dave

p.s. any tips for improving disfunctional legs (numb and not very obedient)?

Daver79
10 Sep 2011 at 4:17PM
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Hi Dave

I was diagnosed in January as for what happens next i would go and see your GP to inform him/her you should of been referred to a MS nurse who you will see about twice a year and any further treatment will be delt with thro her and she will speak to your consultant about this and also inform your GP. As for yourself try to remain positive and use this site for help as for you legs i would bring this up with your GP and MS nurse there are lot of treatment to ease this. We are all in the same boat here i won't lie to you it's going to be a long road and everyday is different but we all support each other and there's lots of info on this site to help

Take care
Dave ;)

stutd
10 Sep 2011 at 7:44PM
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Thanks, Dave. I'll go down the GP route next week.

All the best

Dave

Janrud1
10 Sep 2011 at 7:52PM
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Hi
There was a post on the other day about sale at halfords, 4 wheel walkers with seat £19.99 was I think (£129)
Drive wheelchair £49.99 was I think £179.99 seat cushion priced at £18.99 but you only pay £2.99 wheelchair is fab we got it cos my dear mother in law last stages of cancer and I cannot walk far with stick for example walking along a promenade or going to the races I do admit now I will sit in chair so easy to use lightweight what a barain. Not many left you just have to ask stock in all stores we had to go to bishopbriggs but honestly have never seen a sale like this eer.
Jan

rizzo
10 Sep 2011 at 8:36PM
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Hello, and welcome to the site :)

Dave's already given you great advice - get yourself to the GP and get them to deal with stuff for you. You can also ask your GP for a referral to neurophysio who can help with your legs. They will give you walking aids for free if you need them and/or refer you to OT or Wheelchair Services for bigger equipment (also free).

Getting into a neuro's MS clinic is a bit of a priority I would think. Once you get yourself a neuro, you should get an MS nurse - they tend to come as a pair. (Although, a friend of mine got a referral to her MS nurse from her GP - so worth asking.) The kind of DMDs (disease modifying drugs) you might be eligible for depends on the kind of MS you have as well as your history of attacks. The neuro will discuss this with you, and instruct the MS nurse to follow up and make it happen if he/she & you think it should.

GPs can prescribe meds for symptoms, but some are reluctant to do this without guidance from a MS nurse or neuro. The only way to know what your GP is like is to ask for something (if you need it of course!).

Couple of other priorities:
- you need to check any mortgage policy or critical health policy you have - MS is a claimable condition.
- you need to inform the DVLA that you have a neurological conditon. They'll very probably put you on a 3 year renewable licence (no fee). This only covers you to drive a car, so if you drive a motorbike or lorry or anything else, you will need to do a test.
- I recommend that you tell your employer. Having MS means that you are protected by the Equality Act. This puts legal obligations onto your employer to make "reasonable adjustments" to enable you to stay in work. You might not need anything now, but only fair to give them a headsup. The organisation Access to Work can help you with work related stuff if you need it.

Hth :)

Karen x

stutd
10 Sep 2011 at 10:04PM
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Thanks Karen. Happily I'm desk bound and too sensible to drive a motorbike but useful to know I can possibly still drive. Read that there's no obligation to tell work but agree that it's probably fair to let them know, fingers crossed they're understanding. At the least, it will save me telling them if I can't work at some point in the future.

Will chase up on the MS nurse and treatments with the GP next week.

Thanks for the advice.

Dave

stutd
12 Sep 2011 at 3:37PM
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No real health and safety concerns, but I do have to travel a lot for work. Hoping that, if I make it very clear that I don't want to change anything about my position currently, it might help me get a job closer to home when I'm due for a new project next year. It'll certainly save me from getting sent to Asia in December.

Another reason is that I need to use a crutch to get around and can't really face the endless questions - fall off your bike? skiing injury? fall over outside the pub? etc.

Hopefully everyone will get bored of asking if I'm ok and I won't get my name suffixed with "...he has MS, you know?"

Anyway, the email's gone now so I shall have to face destiny with crossed fingers.

Dave

lapreguiceira
12 Sep 2011 at 4:18PM
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"I'm due for a new project next year. It'll certainly save me from getting sent to Asia in December."

I was diagnosed out there and it depends on where you go(if you do go). MS in Asia is as rare as hen's teeth, but in Singapore there are plenty of UK trained doctors, who know about MS.
I found the medical treatment to be first-class - BUT if you need a DMD you must get it funded by your firm.
I miss my eccentric neurologist, but not paying cash for Rebif. Ow!
If you want to know more, I may be able to help.
best wishes,
Katrine

JimmyP
12 Sep 2011 at 5:54PM
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Hi Dave,

I was diagnosed around a year ago out of the blue. So fair to say, like you, I didn't know what to expect.

I have RRMS and pretty much, for me in this last year at least, it's business as normal. I jumped at the chance to take the DMA drugs that are meant to offer some (around 30% is the quoted figure) protection against relapses. So I inject myself once a week with Avonex and all going well so far.

I have heavy and stiff legs most of the time, especially in the mornings. But not that bad that I cant walk to the train station and go to work. I work full time, I do well, I am in sales and bring in more business than most around me and so far, apart from my direct line manager, I haven't told all of my condition as I don't believe there is anything different about my abilities and those of my colleagues.

I need my sleep more than I used to! But again, I just go to bed a bit earlier and I am fine. If I try to burn the candle at both ends, it will leave me exhausted. Personally, I have not read everything I can about MS and what it may do in the future as I don't want to worry about things that may or may not happen. I remain positive, I eat well, I don't drink too much and I enjoy life as best I can

The future? who knows, but who knew what the future held before MS? I simply try to be as I was before, enjoy what I do and for me I focus on being positive.

I wish you all the best for the future and if you can, look into DMA drugs as mentally, doing anything I can to help my condition makes me feel more positive day to day and this appears to help.

Jimbo

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