Advice you wish you'd been given when newly diagnosed

New diagnosis and before diagnosis
1

Hello,

I was formally diagnosed with RRMS last week but, in reality, had know for a few years that was the most likely outcome - following an episode of CIS in 2008, my neuro avoided the formal label until the point he felt some treatment would be appropriate.

My day to day symptoms are pretty manageable although someone is playing a nasty joke as the last couple of days have been my worst for fatigue for several months.

I’m seeing the MS nurse for the first time on Friday and am wondering how to make best use of the appointment. I’ll hopefully see the neuro again in late September - had to be referred back to him on the NHS as my initial consultations and tests have been covered by medical insurance. He says he’s expecting me to tell him which medication I want to have when I next see him.

Background that may, or may not, be relevant:

  • I work full-time (one day a week from home) in a senior role with a commute (mainly train) 1.5 hours each way

  • I’m off to the US on a 10 day work trip in six weeks and don’t want to make a rush decision about telling work about my MS

  • With some physical symptoms, I struggle to know if they are MS-related or not

  • I’m not sure how to identify a relapse!

  • I’ve told my husband, parents, sister and children (12 and 14). They expect life to carry on for them as normal…

So, with that random selection of information, what advice or reflection would you give?

Thanks

2

Very good question Koko,

I would ask why they have not offered you any treatment so far like DMDs when DMD's? - Everyday living - MS Society UK | Forum I believe there is a pill based one now.

As far as work is concerned you have only just been diagnosed. When you have got your initial shock over I suggest you tell them. It is far better than Chinese rumours going around; only HR need to know if you want and then you will definitely be under the safeguards of the Equalities Act Equality Act 2010: how it might affect you - GOV.UK

If in future; as you may never need it; there’s something called Access to Work. Lots of help available; I’m thinking of your commute. They pay for a taxi to take you to and from work you only pay the equivalent train/bus fare Access to Work: get support if you have a disability or health condition: What Access to Work is - GOV.UK

Hope this helps

George

3

Forgot to say this website will help in your choice of treatment Multiple sclerosis - NHS

George

4

I was given two pieces of good advice 15 years ago - they have both proved useful and cannot be bettered in my experience: (1) be brave and (2) don’t go home and get the doors widened just yet.

One, the other or both tend to serve in most circumstances. By which I do not mean that they are always easy to apply, just that they usually make more sense than the alternatives and tend to be a pretty fair guide for getting by. The only thing I might add is, don’t rush into anything. Take your time: information is easy to divulge and impossible to recall once it’s out there. But then I suppose that is actually already covered by (2) above! So forget that: (1) and (2) will do.

Good luck.

Alison

3 Likes
5

Thank you both.

I will be having DMDs - apparently I need to talk to the nurse and decide which one I want?

My instinct is to be pretty open about my MS so it doesn’t become an elephant in the room. The only person I’m wary of is my immediate boss as I worry she may make assumptions about my ability to do my current role, let alone take on more. Not sure how the squad that circle yet so I will give myself time to think. Overall, I’m confident that, with a small amount of flexibility and understanding, I can carry on at work just fine. My direct reports would all be great and it’s an important part of my management style to treat people as professionals. With hindsight, I can see why I’ve had to leave work mid afternoon about four times in the last two and a half years. My sickness record is good - no more than 6 days per year plus a couple of half days for medical appointments - and I’ve effectively lived with this for almost seven years.

Much harder will be the domestic element. My husband says he has nothing to say and no thoughts or worries to share since I told him. I feel like I’m expected to keep going exactly as I always have with precious little help at home. If anything has to give I’m concerned he expects it to be my social life. If I’m well enough to go out then I’m well enough to deal with the children / do the ironing / cook the supper / clear the kitchen etc. That’s been an increasing struggle for the last couple of years and one I’m not sure I’m prepared to continue.

It’s still very early days at the moment. Hopefully the MS nurse will help me sort out my priorities and I’ll then decide whether to take a few days off work to recover from this rotten cold and fatigue that arrived with the diagnosis. I’m slightly freaked out by the fatigue as it’s rare for me so it seems strange for it to come within days of diagnosis. Logically, I suspect the cold that my daughter passed on is more to blame, but it’s especially bad timing!

6

For what it’s worth, it is by no means unusual for nearest and dearest to stick their fingers in their ears and go ‘la, la’ very loudly. One of the common alternatives is catasrophizing like Chicken Licken with the sky falling in, so take your pick! But those are generalities and you OH is someone you know inside out, so you know what the form is and general observations don’t add much. Do bear in mind, though, that people do react odd ways and not always characteristically.

Alison

1 Like
7

Get the family interested in learning to cook and clean - why should it be all yours to do - even if you were 100% fit and well.

Lots of meals that are quick to cook from scratch - especially stir fry - wok cooking. Or all- in -one pot - slow cooker.

My MS started before my daughter was born - so she grew up very quickly and learnt to be independant. She could use the washing machine and the hoover at a very young age. She is a great cook - and very practical about the house. She has her own home - but does call round several times a week.

8

Be bold and get on the best DMT as soon as you can.

9

I’m more confused than ever about DMT. But I have plenty of time to think - looking like October before I can see my neuro and then the nurse again in the middle of November. I wasn’t expecting a rush of appointments, but I’m not thrilled that it’ll be three months from being told I should have drugs to an appointment when they could actually be chosen and prescribed… Is that normal?

Nurse indicated tecfidera or lemtarada might be the best options and has sent me more to read about each. I don’t know if I’m even eligible for lemtarada - my reading has given me conflicting views.

I’m on holiday soon and think I’ll try to get lots to read then.

10

Yes, pretty much.

It is always worth making clear to them that, were there to be a cancellation earlier, you would drop everything to be there.

Alison

11

Hi we are newly diagnosed family as well

lots to cope with mentally even when you know the dx is coming when the Doctor says it still hits you like a train.

Lots of great advice above, do you research in to DMDs.

Dont forget to tell DVLA legally you have too

Optional but I would advise it, tell your line manager and HR… you may find your covered on the company critical illness cover, many stipulate a time frame from dx that you have to tell them in, most say tell them within 3 months of DX.

Check with your own insurance if you have some as well.

You never know with MS whats coming so encourage all family member to do the domestic stuff, will leave you more energy for the fun family stuff not just work and chores.

Also some times us men are slow on the up take, ensure he know exactly how your feeling and what your coping with, fatigue, other symtoms etc, he wont know as they are not visible to him.

Keep smiling and ask for help and reach out to friends when you need it.

2 Likes
12

“It’ll be three months from being told I should have drugs to an appointment when they could actually be chosen and prescribed… Is that normal?”

Compared to my experience, it’s even good!

Luckily for me, my final decision (with my neuro’s complete backing) was to decline them anyway - meaning I haven’t got anything to be outraged about.

But I waited nine months from being diagnosed and already told I qualified, to actually having a formal assessment to verify that, as apparently, the person doing the diagnosing does not stoop to bureaucracy like that, so they had a special “clinical associate”, or something like that - apparently whose only function was to screen the newly-diagnosed for DMD eligibility.

Except that on the very same morning I was to have attended, she went off long-term sick, and I got a call to cancel.

They didn’t have a replacement, so I had to wait until she returned to work nine months later!

It didn’t make any difference to my treatment, as I decided no anyway, but I suppose, looking back, it was extremely stressful having the decision hanging over me all that time - like being in limbo all over again. Yes, we now know I have MS, but there’s a nine-month wait to decide what (if anything) we’re going to do about it! Hardly ideal.

I know she couldn’t help being ill, and I imagine it must have been something quite serious to be off all that time (and when I did see her, she had a plaster on the back of her hand at exactly the place it would be if she’d recently had a cannula there). So I don’t blame the poor lady at all, but anyone can get sick at any time (as we all know!). Can you really have a whole waiting list grind to a halt for nine months, because one person is ill?

Tina

x

13

Hi

Take your hubby with you to any appointments you attend,firstly he can ask question too, also he may remember things discussed which you might not and of course for support for you,even it’s just holding your hand.

Men do some time bury their head in the sand so try discussing the fatigue at your appointment this may help him realise how worn out you feel when your fatigue hits you.

When you are fatigued rest, don’t keep doing things which you think you should be doing, by experience keeping going just makes it worse and takes longer to fade, as it will with time and rest.

Oh yes take a list of questions you wish to ask at doc/Nuro app.

Good luck

Annx