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I don't understand!

Hi. Can any one tell me more about pprms?
I am still not clear what it means.
Also I am going for the drip infusion soon.
What can I expect as side effects apart from low imunity?

Many thanks

Crystal

hate to say it WHO DOES understand it?

what i know is this. You start and you never have remissions so its with you on a level at all times. However, i have read that it can quietened down for a time then kick off again. I call that the calm before the storm.

its rare actually not so many people get diagnosed with it. Mine started slowly and over time, and each year it would get a little worse. went from walking the dog to using a scooter, etc.

after 21 years from onset of what i believe was my first symptom going blind thankfully temporarily in one eye, i am now housebound as i cant get out on my own. I can still use my legs to a degree but slowly having to sit more and more on my rollator to rest after just a few steps. i only use my electric wheelchair out.

from MS society. Primary progressive MS | Multiple Sclerosis Society UK

are you starting Ocrevus?

And who understands MS? It’s the most infuriating mishmash of symptoms, varying names of the different types (RR/SP/PP/RP/benign…) and so many of us with different diagnoses share many symptoms.

Equally, two people could have the same subtype of MS, diagnosed at the same age, at the same time and with the same access to drugs and yet they’ll differ in symptoms, disability, etc, etc.

Half of the (non MS specialist) doctors, nurses and other health professionals don’t understand MS. My colorectal surgeon said to one of the nurses (about me), ‘she’s got really bad MS’! Idiot. I said, ‘actually I have bad disability from MS’. In terms of ‘bad MS’, there are many people who’ve had far more and way more serious relapses and/or progression than me.

As far as I understand it, PPMS affects about 15% of people diagnosed with MS. It is characterised purely by the lack of a relapse/remission pattern. But people experience of PP varies massively. Some people are diagnosed and very rapidly become disabled. Others have a slower, more creeping progression and disability.

All any of us can do is gradually learn our own variant of MS. Keeping a diary helps. So long as we remember to write in it!!

Sue

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thankfully mine seems to be the latter although stressful events kick start it a tad.

i agree with you WHO KNOWS what it is. xxxx

Hello Crazy Chick. Thank you very much for kindly answering my post.
Yes I am starting Ovrevus on 15 this month. I am now some times struggling to walk and my arms move like in slow motion.
My right ankle gets stiff and I am soon very tired.
I am so sorry to read that you are blind. Thank you for your support here on the forum.

Hello Sue. Thank you so much for kindly replying to my post. It is indeed very confusing with the various individual symptoms.
Thank you Sue.

I just re read my last post i am so sorry i missed out on some information i shouldnt be in a rush to answer.

I went temporarily blind in my left eye it freaked me out but recovered quickly.

ALSO bizarrely i get the stiff ankle but left. I apologise for confusion. xxx

I saw that! Realised the confusion! MS !
We are all beautiful snowflakes!
Sue

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