Forum

A & E Channel 4

I agree that this episode was sad but DNR decisons are supposed to be with the patients consent if possible as well as the next of kin, after working with patients for 18 years in a hospital setting I felt the very difficult discussion was performed with sensitivity and compassion. Honestly if I put myself in that situation as a sec prog mser I would not want to be resuscitated, my own quality of life in the last 4 years has declined significantly, not to this mans level yet, my husband and daughters are well aware of my feelings on this matter and we have had the difficult discussion about this very subject. My independence has been eroded by this awful condition and I hate that, at the moment Im still “me”, a wife and mum. There will come a time when that changes and I hope to die with dignity at a time when I choose.

I know this a very emotive subject and everyone has there own ideas on this subject but this is mine.

I usually do watch A&E but I missed it, my mum watched it and suggested I didn’t as it would just upset me. Just recently dx and I think it would of upset me more. I’m already finding it tough getting to terms with it all. Ash x

None of us may never get to that point with this disease, am I right in thinking that as someone very early on in the journey?

That’s why I didn’t want to watch it. I’m only in my 20’s too and early stages of diagnosis… I believe it is only a small percentage of MSers deteriorate so quickly to an aggressive form of it. I know it can’t be ignored and it still affects a small percentile of people, but it’s not something I wanted to watch so early on the journey.

I think what the programme should have done was explain that this isn’t typical ms and its really only a small percentage (I think the statistics are not around 5%) have that form of ms. I think people have a perception already of what ms is which is normally completely wrong and misguided so I think the programme should have highlighted it more

I quite agree with you, I am S/P too but have a good quality of life at the moment and do not want to be a burden and do not want to loose the independance I have and wouldn’t want to be ressusitated if I was in the positon where my life became intolerable but having seen people in this situation who fought to stay alive for many years, I have had to face the fact that for some people the love and companionship of being together for over 40 years, is enough, and when the man passed away, it was one of the saddest funerals I have attended.

Wendy x

Hi anon

Yes you are correct, There are very few people in my MS branch who use wheelchairs all of the time. Most of our symptoms are invisible. The young man in the programme was very unlucky.

One of our members with Primary Progressive MS is in his late 70s and still gets around ok, another younger member with PPMS who has had MS for over 10 years gets around better than me.

Wendy x

Hello,

I would like to point out that the narrator did say his ms became bad following a nasty accident.

Yes it was triggered by a knock to the head, it’s making me wonder if that knock to my head from falling off of my bike, didn’t trigger my ms too.

Wendy x

Preferences

English

Preferences

Could anyone answer how a knock to the head could trigger MS please? I had a bad knock to the head which left me with pins and needles from the waist up for 4 days. When I asked the neuro if this could have triggered my MS, he said no, but I’ve often wondered.

Thanks

I took note of that comment also. I had head trauma and broken neck some 21 years ago. So part of me wondered however i was on another part of the forum and asked about the percieved link. A person directed me to a link/research which talked about no conclusive evidence to link head trauma to MS.

However i work in a hospital setting and some years ago noted in a clients medical notes that his dementia was linked to a car accident he had some years ago.

However on reflection how could you say a person would not have got MS/Dementia anyway rather than it be linked to head trauma…

Yvette

Yes Yvette, I had a knock to the head which could have been a trigger, I also had an inoculation for Hepitits A, followed by a relapse, this has also been shown to be possible trigger, then I spent many summers keeping out of the sun and keeping my skin covered after developing eczema following the birth of my daughter, so very little vitamin D there then and there is the genetic link, my mum had Rheumatoid arthritis. I suppose that one or all of these potential triggers could have started me on the road to MS. I believe there is no single cause.

Wendy x

Hi Wendy,

I didn’t know there was a link between MS and Rheumatoid Arthritis…my mum also has RA, but only developed it at 65 years old when usually it is much younger. I was diagnosed with MS last year at 41, but I feel I have had mild symptoms since I was 5 years old when I had encephalitis. Is the link that MS and RA are both autoimmune diseases or something else? My gran had Parkinsons, could this also be linked?

I also kept out of the sun for years due to eczema, then having children and my Vit D was very low when tested!

Also had a bad knock to the head a year before my first major relapse which led to diagnosis.

I started with numbness after swimming in a cold lake at night and read that Jack Osbourne also started with symptoms after swimming in a lake at night!!

The list of potential triggers are endless!

I wish I knew what caused my MS, I feel I could accept it then.

Fizzy x

Preferences

English

Preferences

Hi Fizzy,

Yes, MS & RA are both auto-immune diseases. Incidence of one is higher than chance would predict in families where someone already has the other. Type 1 diabetes and Crohn’s may also have shared links.

Parkinson’s has been linked with mutations on the same chromosome as many people with MS. There’s no single cause of MS, so I’m not saying it’s always caused by a single genetic mutation. But it’s interesting, isn’t it, that two neuro conditions are both statistically correlated with changes on the same chromosome?

I’ve got both MS and Parkinson’s in my family, though neither in close relatives. The MS and Parkinson’s cases were sisters though. When my neuro took a complete case history, they did write all this down! I’m sure if they thought there was absolutely no relevance, they wouldn’t bother to record it.

Mind you, they also wrote down that I’d smoked exactly one spliff, aged about 17! I hardly think that has anything to do with developing MS some 20 or 30 years later! Even if it was conclusively shown there was a link between MS and marijuana, the odds of one smoke causing it must be absolutely astronomical. I’d have thought there was a bigger chance of getting struck by lightning!

Tina

x

Preferences

English

Preferences

Hi Tina,

Thanks for your informative reply. As we have MS, RA and Parkinson’s in my family, does this mean my children’s chances of developing MS are higher now, than if just MS was in my family? It is something that concerns me greatly. We also have eczema, asthma and allergies which seems to have been passed down from my mum too!!

I did mention the RA and Parkinson’s to my neuro and I also told him I’d had symptoms since I was a child, but he said that was impossible and wasn’t interested in the RA or Parkinson’s connection either. I wish I could change neuro, as I don’t have any faith in him at all. He diagnosed me with RRMS in October, then when I saw him in April, he asked me if I knew there was a possibility that I MIGHT have MS!!!

Fizzy x

My own first symptom was caused by an airplane flight. Going on holiday. Started with feeling just weak them a very heavy nose bleed. So it’s diffrent for everyone.

Hi BE,

Funny you should say that, as for a long time I thought my first major relapse was brought on by flying. My symptoms started 4 days into my holiday, then 4 days after I returned home they got much worse, which is why I thought it was all connected to the flight. I did ask the question on here, but it didn’t seem there was much of a connection, but now I’m wondering again! Will try and post the link…

http://www.mssociety.org.uk/forum/everyday-living/relapse-after-flying

Have you flown again since?

Anyway, I will soon find out, as I’m going on holiday shortly I will report back!

Fizzy x

Preferences

Preferences

Preferences

English

Preferences

Hi Wendy,

I didn’t know there was a link between MS and Rheumatoid Arthritis…my mum also has RA, but only developed it at 65 years old when usually it is much younger. I was diagnosed with MS last year at 41, but I feel I have had mild symptoms since I was 5 years old when I had encephalitis. Is the link that MS and RA are both autoimmune diseases or something else? My gran had Parkinsons, could this also be linked?

Fizzy x

Preferences

Hi Fizzy

My paternal grand father also had Parkinson’s disease, aren’t we lucky having all of these genetic links!

Wendy x

English

Preferences

[/quote]

Fizzy haven’t flown since. As you have said when I came back home. Lost total power on left side of body. Strange connection between us both, and flying.

wow that was emotional! Just watched it on 4oD, luckily i’m the only one up ( my kids would of then been convinced that that was how i was going to be!)

What an amazing mum, unconditional love and support for her son. Soo pleased he recovered from the infections and got home, made me cry with happiness!!! And what a fighter he is.

Kate x