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Definition of type of ms.

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ptlike

Hi all, I find the diagnosis of the type of ms you have very confusing but very important as to the type of treatment available to you. I am classed as secondary progressive ,however I see people with remitting remision far more disabled. I see people with primary progressive far better. The main factor seems to be the age you were found to have ms.

Predicting the weather seams to be a science that mirrors ms predictability, guessing both ologies haha

Best wishes

Peter

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Nick

Hi Peter,

 

Good point,   I totally agree. I feel the classification of MS is very difficult to comprehend. In the broadest sense the three main types, RR,SP & PP only give an indication of a wide band of probable disability.  Each persons disability is clearly dependent in the way in which their own MS 'attacks' them and the specific resulting damage. I to am SPMS and know exactly what you mean when you find it confusing! 

 

There again I'm easily confused!

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Just another Warrior...........

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Fine
WobblyGreg

I thought when i was diagnosed that RRMS was just the tag he gave me as id got  shitty about the probable MS dx i was given and insisted he gave me proper dx

I could probably maybe at a push think of 2 possible could have been might have been relapses in my life before being diagnosed .

I am still, classed as RRMS though I'd say I was more likely secondary but hey I just have the bloody disease not an expert lol

 

MS  NURSE this week who will undoubtedly refer me to Nuero as haven't seen him for ten years probably .

All because of PIP but that's another story 😁

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Sluggish
Shirl

Hi Peter, Nick and Greg

 

Yes, I think the classification system is as much about historical data as clinical and scientific. I have always been clumsy. Desperate to be like others, I'd get stuck on top of the climbing frame, fall down flights of steps and be left until last when teams were picked. That sinking 'not me again' feeling. This clumsiness escalated as a young woman and exploded post-childbirth. Eventually all the dots had to be joined together and I began the long trawl through MS diagnosis. I skipped the RR stage by then so became SP some 11 years after the DX began.  Thus ending Limboland... and beginning SoWhatism... That's a cynical way of saying labels may be important but they change very little about you other than opening the door to disease modifying treatments. I am treated on a symptomatic basis... 

 

I think the benefit system is going to continue in its fascination for labels and names of diseases. But every individual has unique experiences - THAT is what we need heard. PIP is with us for now and we each have our own story to relate. As well as that file of supporting evidence. When in doubt, keep it.

 

 



Shirley  "one day at a time" - it's all anyone can do"

 

This year, my husband is raising funds for MS Trust with a 
Pete's No Beard Or Hair Cuts 2019 (Colour in December) Challenge for MS Trust

Thank you all

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Nick

On Labels,

In Neil Munroe's famous tales about the Puffer Captain, Para Handy (A book well worth reading), Para Handy is poaching along the river bank and is asked about the legality of taking salmon from the Laird's estate.  His reply is simple,  It can't belong to the Laird simply because the salmon doesn't  have a label attached. This satisfies the crew who are then able to tuck into a salmon supper without feeling guilty of any misdemeanour.

I love this! Label or no label, the reality has very little to do with damm labels!

 


Edited by Nick

Just another Warrior...........

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Sluggish
Shirl

Perzackerly Nick, and as a prematurely-retired teacher I can tell you labelling anyone as early as four years old is madness but nowadays if the little ones can't perform miracles in their baseline assessments... I was just happy if they could change for PE, not need changing for any other reason, knew if they were having sandwiches or cooked lunch (which queue to follow) and had some idea what their names were. Plus holding a book the right way up showed some previous experience of words on paper. But I am old-fashioned now and very glad to have escaped, albeit far too soon.

 

I would assume some kind of sorting process for MS will be more necessary as strides into curative treatment, even prevention, become available. They know where to find me when that day dawns - until then I am best left alone. :ignore:

 

The book sounds excellent - I will seek it out. 



Shirley  "one day at a time" - it's all anyone can do"

 

This year, my husband is raising funds for MS Trust with a 
Pete's No Beard Or Hair Cuts 2019 (Colour in December) Challenge for MS Trust

Thank you all

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Nick

Don't get me started on our education system her in England!  Yes, do look up the works of the Scottish Author, Neil Munro, as a journalist in Glasgow in the 1900's he wrote a lot about the Highlands, but today is probably best remembered for his fictional figure Para Handy, based on his first hand knowledge of the folk involved in the coastal shipping trade around the west coast of Scotland.  Very funny, but very revealing about the practicalities of life. 

 

 


Edited by Nick

Just another Warrior...........

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Tired
PaulX

Go on to some of the American forums and you will see there are far more then just the three types. They seem to invent a load more, like Progressive Relapsing etc.

 

If you spend time reading about the attack mechanisms of MS, you will see that either you have a myelin repair function going on, or you don't. Think potholes in the road and how good the local council is, or isn't at fixing them. Or have they given up altogether.

 

And there is going to be a transition period where you are going from one to the other, its not going to happen overnight. Its a slow process, in the main, for most, apart from the unlucky ones with very aggressive MS.

 

I wouldn't get too hung up on categories, though you are right in that is does have a bearing on the treatment available.

I was diagnosed with SPMS straight off, which on the face of it seems a bit odd.

My conclusion is that there were things I was describing to the neurologist that he picked up as RRMS, but to me was just something not quite right. It was only when it had gone progressive that it started causing me real grief. 

 

As to some people with Progressive seeming better and RRMS people seeming worse, that's just how it is. Which is why we all love the variety of MS. :shakehead:

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We're just two lost souls swimming in a fish bowl, year after year,

Running over the same old ground.

What have we found?

The same old fears.

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Founded in 2004, MS People UK is a community website and discussion forum by and for people with Multiple Sclerosis as well as for friends, families, supporters and those interested in this disabling condition.

If you’re newly diagnosed or want to ask about possible first symptoms, or if you’ve had Relapse Remit, Secondary or Primary Progressive MS for some time, a welcoming group of fellow MS sufferers is here to chat with you about MS symptoms, diagnosis and treatments.

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