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Tell me about MS

11 replies

Wellfuckmesideways · 08/08/2024 16:28

DD 22yrs has just been told this morning that she has MS. I don't want to google, so please tell me what I need to know.

This has floored us so I need to know what questions to ask when we go back to the clinic in 6 weeks time.

OP posts:
surprisedactually · 08/08/2024 16:29

were you with her when diagnosed?

Sundayscented · 08/08/2024 16:40

I have MS - diagnosed 20 years ago. The only problems I have are tiredness and a dropped foot. My friend, diagnosed around the same time, has to use a wheelchair. It is different for everyone. The MS Society has some good information as does Professor George Jelinek developed the Overcoming MS Program. Don't put life on hold or expect the worst. Best wishes to you both.

fuckweasel · 08/08/2024 16:46

As someone with a recent diagnosis, firstly don't panic. These days it can be a very manageable disease and there is a much bigger, more effective range of treatments available than previously.

Not Googling is wise, but use reputable websites. MS Trust and MS Society are two good ones. At your next appointment she will probably be told which DMT/DMDs (Disease Modifying Treatments/Drugs) she is eligible for. What surprised me is that MS patients are given a lot of autonomy in choosing their own treatment. The MS Society has a good decision making tool about which to choose. It is worthwhile her familiaring herself about possible treatments. All have potential for side effects, but equally some people get none (I count myself lucky, I'm on dimethyl fumarate aka Tecfidera, which I tolerate very well).

She should be assigned an MS nurse who will be her first port of call to organise medication (it's a whole new ball game as the meds come via courier if choosing home administered treatments) and to go to for support with new symptoms etc. She should make use of any support offered.

It's a very frightening place to be at the moment but she will move towards acceptance given time. Acknowledge it's scary and not a diagnosis anyone would want but it is manageable, I've learnt a lot about 'toxic positivity' recently!

One very personal decision is how/when to tell friends and employers. Personally I told anyone who would listen, but everyone is different.

Another consideration is that from point of diagnosis anyone with MS is considered disabled under the Equality Act 2010. This opens up a whole range of rights and considerations in the work place.

Happy to answer any questions. PM me if you wish. It was so helpful for me in the early days to communicate with others with MS.

Best of luck.

mitogoshi · 08/08/2024 16:52

Don't google! Also don't see people in their 60's with it and assume that's her fate. Things have changed and are changing regarding drugs etc.

It is a lesson to live life now though, my friend is packing her life full of amazing experiences, has 2 lovely children and is not waiting until tomorrow if she can do it today if you know what I mean. Her prognosis is mid as far as MS, worrying but we have hope.

Scramblelina · 08/08/2024 16:52

I’d highly recommend joining www.shift.ms it's a social network for people with MS.

Also as above recommend checking out www.overcomingms.org for advice, I’ve been following his recommendations for about 10 years and am pretty healthy.

In the meantime, I’d advise starting to take vitamin D daily.

Try to avoid googling because it’s mostly full of doom and gloom and will probably send you spiralling.

She can and mostly likely will have a perfectly normal life. Feel free to message privately if you need to talk x

Wellfuckmesideways · 08/08/2024 16:58

Thank you for your messages. Yes I was with her when the Dr told us. She had a head MRI scan last Friday which showed abnormalities, and our local hospital sent her scans to the specialist neuro hospital who told us this morning. She didn't have a lumber puncture test as the scan was conclusive. Not sure if this means that it's more advanced- question to ask at the MS clinic I guess.

I know we have to inform DVLA, but do we need to tell her car insurance company as well?

OP posts:
surprisedactually · 08/08/2024 17:00

Wellfuckmesideways · 08/08/2024 16:58

Thank you for your messages. Yes I was with her when the Dr told us. She had a head MRI scan last Friday which showed abnormalities, and our local hospital sent her scans to the specialist neuro hospital who told us this morning. She didn't have a lumber puncture test as the scan was conclusive. Not sure if this means that it's more advanced- question to ask at the MS clinic I guess.

I know we have to inform DVLA, but do we need to tell her car insurance company as well?

Did the Doctor spend time explaining things?

BashfulClam · 08/08/2024 17:04

Do you know if it’s progressive? My DF had the progressive illness but my boss had a version where she would have a flare up of the illness then she’d be in remission and be fine for quite a while. The MS society were fab at helping my mum and dad.

fuckweasel · 08/08/2024 17:05

Wellfuckmesideways · 08/08/2024 16:58

Thank you for your messages. Yes I was with her when the Dr told us. She had a head MRI scan last Friday which showed abnormalities, and our local hospital sent her scans to the specialist neuro hospital who told us this morning. She didn't have a lumber puncture test as the scan was conclusive. Not sure if this means that it's more advanced- question to ask at the MS clinic I guess.

I know we have to inform DVLA, but do we need to tell her car insurance company as well?

You should tell the insurance company, though they cannot raise premiums as this would be discrimination. The DVLA take an age to make a decision (they will contact her consultant). Often they issue a medical licence that must be reviewed in three years.

surprisedactually · 08/08/2024 19:42

fuckweasel · 08/08/2024 17:05

You should tell the insurance company, though they cannot raise premiums as this would be discrimination. The DVLA take an age to make a decision (they will contact her consultant). Often they issue a medical licence that must be reviewed in three years.

you are sadly wrong

Insurers can also temporarily put the price up or increase your policy excess while you're getting used to a new disability or condition. They can only do this if there's evidence that you are an increased risk during this period.

surprisedactually · 08/08/2024 19:50

Under the Equalities Act 2010, insurers cannot refuse coverage, raise premiums or increase an excess based on a driver’s medical condition if it was declared when the DVLA issued your licence.

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