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Alienated by MS society - again

I’ve just received a “Research” form to fill in from the so-called MS society.

Once more in the section ‘which type of MS do you have?’ there was no mention of BENIGN MS

Have they never heard of it? Do they prefer to ignore it because it’s ‘not really MS’? Have they tried living with it?

I can answer the last question - Obviously not.

It seems that this society is just for certain types of MS - why not come out and admit it?

Or better still, get real, and encompass ALL types.

Do I sound angry?

Good: I am.

Make sure you complain about it to people that matter, not just posting about it here. sure someone might pass it on to people that matter but unlikely unless you actually manage to talk to a person/people that is in charge of forms. its not going to be changed unless people try to change the problem. Even tho not overly common and usually diagnosed after awhile without major relapses, and can be hard in some cases to diagnose (and I have read/heard Neuros that don’t believe it exists), its still a type of MS that should be on the form

Hi, This was recently on the Barts MS Blog about benign ms.

This comment was on the Barts Blog today.

Recently ProfG has been arguing that Benign MS is a misnomer and people with so called benign MS have evidence of damage as shown by thinning of nerves within the retina.

So there you are, the evidence mounts that benign probably doesn’t exist and expect you just have rotten MS like the rest of us. I hope this helps to make you feel less alienated.

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Jackie

I was diagnosed as having benign MS in 1998. But had had minor symptoms since 1989, maybe that’s why diagnosed benign.

Only 5 legions and only sensory symptoms. Now progressed to SP so slowing down.

Agree with Jackie, it’s frustrating when I filled in forms etc.

Talk to someone that can make a change.

Filled in a questionnaire recently - think might have been MS society. They asked if I had done research on the internet to get information after diagnosis… in 1998 I went to the library and read hard copy books - internet was not part of the everyday world then. You’d think the composers would have thought that people living today will have been diagnosed with MS for up to 70 years ago.

Keep well,

Jen x

Thanks for all the helpful comments.

My first symptoms were in 1973 & eventually got the diagnosis of benign MS in 1993, after years of not knowing what was wrong with me - but suspecting. Guess this sounds familiar to many people here.

So, I’ve lived with for over 40 years now, with just a very, very slow decline.

I’ll take youradvice and complain to the right people.

Thanks for listening.

Hi Jackie, no wonder you are hopping (no pun intended to anyone with mobility problems…probably most of us, eh?) mad! I would be also, if I was in your place.

Did you put a comment on the form to let the writer know of your concerns?

Benign is a rediculous way to describe ANY type of MS.

You tell `em girl!

luv Polllyx

benign m.s. — oxymoron!

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sorry krakowian I must disagree with you.

In 10 years I have had 3 relapses none of which can be called that officially cause they are not severe enough, my symptoms get slightly worse over a couple of months then go away over the same length of time but I’m still active in the gym through these times. Officially I have never had a relapse but I do have MS - its not primary progressive and its not secondary progressive cause I was diagnosed with my first two attacks which were just pins and needles in my legs. Its not relapsing remitting so what else can it be called.

(its my birthday today so anyone who wants to argue with me has to wait until tomorrow )

JBK x

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Happy Birthday JBK hope you have a lovely day

Jan x

I think krakowian was spot on! Well said :slight_smile:

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Good year 1973; year I was diagnosed but stop beating yourself up over this so called type. If you’re ‘benign’ count your blessings it’s not Balo or Maburg; continue to get a quality of life.

More surprising I feel is the amount of non-info they give about the MS hug; I do not get it but loads do!

George

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According to MS-UK. What you have been diagnosed with - retrospectively, with long term review of your symptoms - is simply a form of RRMS.

"Benign MS is a form of RRMS. Benign MS is used to describe a person’s experience of RRMS after many years – it cannot be diagnosed with from the outset. A person will be initially diagnosed with RRMS and it is only after time – perhaps 10 to 15 years - that a neurologist may suggest that their MS is benign.

People diagnosed retrospectively with benign MS will have exhibited mild symptoms with infrequent relapses. After a relapse, there is complete recovery. People with benign MS will have little or no disability after ten years after being initially diagnosed as RRMS.

A person with benign MS can still experience relapses and symptoms, and their MS may change as they grow older.

Around 10 to 15 percent of people with RRMS will be diagnosed retrospectively with benign MS."

I have RRMS but this was initially diagnosed as RERRMS (Rapidly Evolving RRMS) - hence why my MS neurologist got me onto Tysabri ASAP.

Don’t you hate all these different labels? Perhaps it would be easier - and just as accurate - if they called them something like “MS Classic”, “Diet MS” and “MS Full Fat”

And, of course, the latest opinion is that describing different types of MS is incorrect and completely counter-productive as there are just different shades of the same thing.

Of course, there could be worse labels to have for your MS experience. It used to be the case (and I think that it still is in some US literature) that PPMS was described as “Galloping MS”.

Describing anything relating to MS as “Galloping” is really adding insult to injury!

That’s about as damned insensitive as you can get, isn’t it!

This calling it benign if there’s been minimal disability…I hope that’s counting mental issues too, but I kind of suspect it means just physical ones (i.e. ones other people can see). : /

I think that is what the Barts MS Blog were discussing very recently.

"The study below on benign MS illustrates a point that we have made many times before; benign MS is a very difficult call. A significant proportion of benign MSers have cognitive impairment and associated fatigue, depression and anxiety. Therefore is it correct to simply call someone as having benign disease based on the EDSS, when the EDSS is not a very good way of capturing the impact of MS early on?

Today there is a new new post on the Barts Blog about benign MS.