Good Evening All

New diagnosis and before diagnosis
1

I am new to this site, but I am looking to find groups of people who have also succumbed to this condition.

I was diagnosed in November 2018 with Highly Active Relapsing Remitting MS, and have gone from being very active, working in the local hospital Trust, to being someone who works from home 4 days a week.

I was formerly a member of 264 Royal Signals Squadron, having gone through University, then Sandhurst, then stationed between Blandford and Hereford, before becoming a Civvie.

As such, I was always very active, and saved up to buy a Nissan Qashqai 1.6 diesel Tekna.

A month after the lumbar puncture, I collapsed at home after a PTSD session.

My partner thought it was relapse, but when she struggled sitting me up, she called an ambulance.

I was carried downstairs in a wheelchair where the crew stabilised me, then took me to WHH, where the Drs were surprised that I was still alive.

My partner followed the ambulance to A&E, where the Drs explained to her that if they can do an emergency operation, and save me, I’ll spend the rest of my life in a wheelchair, with a colostomy bag.

My condition was deteriorating, and I was barely conscious, but they identified that I’d been walking around for 2 years with a burst appendix.

When they asked her about the pain, she was only to repeat what I’d sad to her, that I had a mild discomfort.

After 5 hours in Theatre where they opened up my abdomen, removed the rotted bits of my appendix, then did a lavage, to clear out all of the pus by taking out all of the organs and cleaning them before putting them back in.

I have since recovered, but have to live with fact that I have MS.

That is my story thus far, but I go to the MS Centre in Canterbury, once a week, see a Councillor once a week, go to KCH once a week to work, and work from home the other 4 days.

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2

Wow, you’ve been to hell & back. But you’re back! That’s the main thing.

So what medication are you receiving now for your condition?

Graeme

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3

Well, surviving that lot should certainly give you grounds for confidence about your resilience.
I’m in the highly active RRMS category too, and have been on Tysabri for 10 years. What disease-modifying treatment are you on?

4

Hello,
Well done on having a previously active career in the millitary, very honourable.
My only previously active career was as a holiday rep, which was manic.
These days, multiple sclerosis has stymied any active pursuits and I get by shuffling with the help of walking aids; that’s my story.
All the best,
JP

5

Good Evening Graeme, I am also on Tysabri. I have an infusion by cannula every 4 weeks.

6

Good Evening Alison, I am also on Tysabri. I have an infusion by cannula every 4 weeks.

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7

Good Evening JP I am on Tysabri. I have an infusion by cannula every 4 weeks.

I know that feeling when walking around the supermarket with my stick.

I’m currently waiting for the Council to review my request for a Blue Badge, so that my girlfriend doesn’t have to drop me off in town before driving to the car park.

I was given a hospital Blue Badge, so that when I go to work on site once a week, I have less of a trek to get to the office, with a satchel (old habit) and my work backpack.

8

As far as I can tell, it’s the one neurologists and specialist nurses would choose for themselves. I’ve been on it well over 10 years, and it has stopped my alarmingly active RRMS in its tracks. I hope you find the same.

9

Hello Ivor,
I’m afraid I think infusion drug treatment doesn’t agree with JP, possibly too much of a good thing; intramuscular or subcutaneous is much more agreeable.
I have a walking stick (nordic poles) hanging off each arm, whenever I’m out and about.
I have a blue badge but I’ve not been behind the wheel since the late 90s; it is useful though when I get ferried to appointments.
I work from home instead of office these days, thank goodness for Access to Work and Fire Safety Order so I can remain on ground level.
Best regards.