@Kevin1786

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Kevin1786

new diagnosis

I wouldn't mind some advice from you all. My wife has just been diagnosed with MS and although she has yet to be given a treatment plan/medication, I/we have found that the diagnosis has raised more questions than it answers. I would love to know what I can do to make my wife's life easier and maybe some of you out there have some do's and don'ts based on past experiences. My natural reaction is to ensure she has to do as little as possible to ease the stress but another part of me is afraid that this type of approach may make her feel worse in one way or another. I've also got loads of other questions in my head which may or may not be answered on here What if she can't go back to work (she's currently off long term)? What disability help could she benefit from? Are there local groups to talk to? What can we expect from the treatment plan? How will/should the NHS deal with her diagnosis? to list but a few. Look forward to hearing from you all.

Stumbler

@Stumbler

Hi @kevin1786 and welcome. It's good of you to join us on behalf of your wife. She's lucky to have you. You are now having to walk a bit of a tightrope and find the balance between acknowledging the diagnosis, without going overboard and smothering here. She's still the same person she was pre-diagnosis, so work forward from that. Just keep hugging her and talk about MS when she wants to. There's some good introductory reading under the "Newly Diagnosed" link on this webpage:- https://support.mstrust.org.uk/shop These publications are available in hard copy, free of charge. At diagnosis, your wife should have been given an introduction to your area MS Nurse, a specialist Nurse, who only looks after MS patients. They should be your first port of call for anything MS-related. See if you can arrange for them to see both of you. They can explain the available treatment plans. "What if" questions won't be useful to you. Concentrate on the here and now. Your wife is grieving for the old life she had and it will take her some time to accept her new life. Citizens Advice is the best place for Benefits advice. Local groups could be located using this website :- https://www.mstrust.org.uk/about-ms/ms-services-near-me The NHS, as stretched as they are, will be there for you. Just keep an eye on commitments and chase them up, when necessary. You should also do your own research on the available treatments, so you can be an active participant in any related discussions. Any other questions, just ask. although your MS Nurse may have some local knowledge too.

karlsohare

@karlsohare

@kevin1786 Hi I’m karly iv been diagnosed one year and not on any treatment at all I take vitamins like vitamin d and only prescribed steroids on a relapse. It’s quite to me aswell I was advised to exercise little and often and change my diet to a swank diet or Mediterranean diet.. I know it’s not a lot but hope it helps

RMDaniels

@RMDaniels

@kevin1786 I was diagnosed in Feb of this year. My husband has been my rock even though he struggles with his own health issues. He hasn’t treated me any differently except that he notices when I’m struggling/overheated/weak & at those times he tells me to rest. Best thing he did for me was get me a dog. She’s a 7 year old shepherd who is a little lazy, lol, just my speed! ❤️❤️❤️

Kevin1786

@Kevin1786

Thanks for the advice all. It's obviously going to be a roller-coaster ride for a while until we work out what's best for her. As for NHS dealings in comparison to what some of you have mentioned, I'm not to impressed whith the way my wife has been treated. To cut a long story short, her diagnosis was a result of being admitted to the hospital while visiting family in East Sussex (we live in Staffordshire) after what appeared to be stroke symptoms and after 9 days in hospital she was told she had MS. They discharged her and was told her notes would be sent to our local hospital. This never happened and we're still waiting for an appointment to come through. After several phone calls we're still no closer. Very frustrating.

Stumbler

@Stumbler

@kevin1786 , contact the Patients Advice & Liaison Service (PALS) at your hospital. They should be able to help you. 😉

Kevin1786

@Kevin1786

@stumbler that's next on the list but in the meantime her life is affected because of admin errors.

wobbleone

@wobbleone

@kevin1786 I would contact your wife’s GP and get them to liaise and find out what’s happening for you to take some of the stress off yourselves. x🙃

Stumbler

@Stumbler

@kevin1786 , if these are NHS admin errors, then let PALS get on the case with them.

Kevin1786

@Kevin1786

Thanks @stumbler she will be in touch with Pals soon.

Shawna_Lockhart

@Shawna_Lockhart

Wow! She’s so lucky to have you. I was diagnosed 23 years ago at 21. Scary stuff. My advice is continue what you are doing. Be her advocate but don’t push too hard. She’s grieving now. It will take some time. Make sure you take care of yourself as well. As hard as it is to have MS I think it’s just as difficult to love someone who has it.❤️