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Oh that's what is wrong with me!

Hi, I am Kate from Northants , I am 62. I was newly diagnosed as having MS last week, secondary progressive apparently I must have had it for years.

I am on the sick from work, I’m a social worker, or was.

It’s all a bit of a shock really and I’m looking forward to hearing from others and learning from them.

Thanks for having me.

Kate

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Hi Kate
I’m in a similar situation
Just be diagnosed as having second progressive too after having symptoms on and off for the past 25 years. I’m now 50
I had a feeling I had it as my daughter has RRMS but I was shocked when they said it was SPMS
I’m coping ok and just a a limp, tingles in arms and legs and constant tiredness but still working
What are your symptoms and how are you feeling after the diagnosis has sunk in

oh what a bummer Kate. i started journey 2000. all kinds of things. My journey is here if you want to read it.

The beginning – My Journey begins in Brazil. – My Journey with MS (livingdailywithmultiplesclerosis.com)

in 2016 although i had a feeling i had MS and so did my neuro he said to me, sorry i have to give you the diagnosis of PROGRESSIVE MS. what a shocker i was probably about 65 then.

everyones MS is different. its a snow flake disease.

what i have learnt over time is a few things. KEEP ACTIVE, both mentally and physically but never over do it. LISTEN TO YOUR BODY. if it says rest REST.
Get good sleep.
stope STRESSING
eat really well and healthy, no smoking or too much jungle juice lol.
dont read too much GOOGLE
enjoy yourself do what you were doing before the label.
have your blood checked to make sure your not vitimin D deficient

thats it i think lol. My life was cut short more when my husband died suddenly in 2017.

But now i am doing things to help others and enjoying it. as a social worker perhaps you could help teach online etc. a lot of people need help and advise.

but be brain active a lazy mind makes you feel worse.
mine feels sharper since i got more involved with helping others and i enjoy doing some on line courses too. I even got my level 2 health and hygeine lol well you never know when i might open up my own restaurant lol. xxxxx

PS one of my greatest joys now is my WILDLIFE CAMERAS. i have my own you tube channel.

this is my latest video. Its such fun have wildlife turn up at the door lol.

Hi Kerry, good to know I’m not alone.

I have quite a few symptoms!
Problems slurring and finding the right word.
Drunk like balance use a stick.
My writing is terrible, motor skills poor.
Numbness on feet
So so tired and arm is tired typing this, even my jaws hurt eating sometimes.
Resting tremor.
Clumsy.

I’ve been reading the posts and I had symptoms that I put down to other things too.

I’m very worried because I have an adult daughter and son, the neurologist said it’s not genetic but seeing posts about a family link,?

Hi Kate
Are you in any medication for the issues
Apparently MS is not hereditary but runs in families!!! My boys have had no symptoms just my daughter who was diagnosed before I was
I have learnt a lot from her.
She calls me her MS buddy lol

Hi Kerry, I was only diagnosed two weeks ago, I don’t know what I can have. Now the Neurologist has referred me to an ms treatment clinic and closed my case.

I was referred to the Neurologist Feb 2020 after physically not being able to write, falling, slurring. MRI showed nothing, PET scan nothing and had a letter in November that there was no evidence of a neurodegenerative disorder. I finally saw a Neurologist for the first time after pressing them in Feb 21 who said I have cerebral ataxia and he ordered an MRI. He called me in on 4 May 21 to tell me I have MS

There isn’t any prior incidents of MS in my family history, are my children more likely to get it? What should we do?

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I wouldn’t worry about the kids yet; just monitor their health. If they start showing the early symptoms, get them to a neuro ASAP.

I’m sorry that you’ve had to join us, but Welcome!

Like CrazyChick said, stay as active mentally and physically as you can without pushing yourself. Learn your limits and work within and around them. Learn how to make trades with yourself. Want to cook a good meal tonight? Then don’t do dishes or laundry. Feel like taking a short walk? Allow yourself to take a nap when you’re done or just curl up in front of the telly all afternoon.

I can’t move around well, but I still go shopping with Mum once a month. I just don’t drive any more and we only hit one shop! I rest up the days before and after. Expand your hobbies so that you can always find something to do regardless of how your body feels that day.

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Hi, Thanks for the help. I’m not on any meds yet. I’m not open to the MS Team yet as the neurologist has not been able to diagnose the type of ms I have.

I have had one appointment with this neurologist who sent me for scans, now I am having a lumbar puncture in November.

Every appointment takes months to come around and my sick pay is running out. The Occupational health doctor does not support early retirement due to ill health because the diagnosis is not a definite diagnosis. My GP has signed me off sick.

I would love to think I will get better and go back to my job of 30 years but how realistic is that? It’s has been gradually getting worse for 3 years and I am 62. I need to get the extra pension to state retirement age in order to pay mortgage. I do not have a partner.

Sorry for the selfish moaning.
I don’t need the extra stress of possibly losing my home.
The union is involved.

Is there a way to get a lumbar puncture more quickly and how much would it be to have it done privately?

Tia
Kate

Hello Kate

What a problem. Diagnosed with MS, yet not with the variety of MS declared, so it doesn’t count as diagnosis!!

In terms of getting a faster LP, it’s really going to be a case of asking your neurologist to see if there’s a an earlier date available. Perhaps phone their secretary to ask for help?

Getting a private LP may be possible, but probably only if your neurologist has a private practice. The reason being that otherwise you’d need to be referred to a private practice for the LP. In any case, I suspect a private LP would cost quite a bit, (several hundred pounds?)

In terms of your children being more or less likely to get MS, have a look at: Risk of developing MS | MS Trust

Sue