Remitting relapsing?

Everyday living
1

Hi

officially dx’d with rrms in Feb this year. Brief history…I had sensations in my face a few years ago which came and went for about a year, doctors said it was a virus and in the end they disappeared completely. About 8 months ago my feet went tingly up to my knees followed after by other symptoms (midriff tingle, nystagmus, brain fog, memory issues, balance issues, fatigue etc).

my consultant, who is a great guy has diagnosed moderate active but I can’t seem to get an explanation as to what rrms means, or really means. I know that as time passes you hold on to your symptoms but as far as I can make out I haven’t had a remit for 8 months, or maybe I have but I’m stuck with bits of it now. I’m not too bothered about feet etc it’s the eye and cognitive thing that is a pain, it would be nice to have a bit of hope that it might remit.

any thoughts or explanations would be fab thanks

russ

2

hi russ

it’s a tricky one to explain even though i’ve had it for 8 years.

i know a remission when it’s almost over.

it’s the way i reply when someone asks me how i’m doing.

i only tell the truth to my husband, everyone else gets “ok”, “fine”.

when i’m truly feeling good, it’s “fabulous”.

what you do is learn to live with it.

your gp can help with symptom management.

bladder issues - the bladder and bowel clinic is wonderful.

to feel alive - make arrangements to go somewhere or do something.

have you got DLA or PIP?

if you have a copy of your award letter you can get a free carer’s ticket at concerts, theatre, football.

when something major happens, get in touch with your ms nurse.

wishing you well

carole x

3

Hi Carole

Thanks for the response, really appreciate it. It takes a bit of getting used to doesn’t it. I just feel like I could do with a remit lol.

Thanks again

4

Russtie,

First of all, welcome to the forums - people here are truly helpful, and many are highly knowledgeable about the ways this condition can affect a person.

Just to clarify: RRMS means ‘Relapsing/Remitting MS’ and is the most common type of MS that people get initially diagnosed with.

A ‘relapse’ or ‘exacerbation’ or ‘attack’ causes varying symptoms to occur (eyesight issues, balance, fatigue etc.) and can last anywhere between an hour to several months. This is normally followed by a remission - either complete or perhaps 90% recovery - that can last anywhere between a few weeks to several years!!

(The term ‘remit’ is not an MS term - it’s to do with payment or an area of activity, so we should be using the term ‘remission’ instead !!)

SPMS - Secondary Progressive MS - affects many people who’ve had RRMS for 10 years or more. It underlines the ‘development’ of the condition to a far more constant form, where people no longer recover from symptoms - not even briefly.

PPMS - Primary Progressive MS - is the rarest form of the condition, where people continually deteriorate from the word go. Hopefully, this deterioration is in very slight steps, but there’s no relief from symptoms ever.

I’m certainly no expert, and not completely up-to-date with the newer findings being made by Neurologists all the time.

The above was the case when I was diagnosed 18 years ago, so there may well be others along to clarify my understanding and give a more recent explanation.

It may well be worth asking your Neuro to clarify the different types of MS, what they mean and how best to tackle your instance.

Remember, we’re all individuals and MS can affect us in a myriad of different ways - it’s often a unique instance for each person (e.g. there are medications that prove highly effective for some, but do absolutely nothing for others).

Good luck,

Dom

1 Like
5

Thanks Dom