Scared!

[Dexterdog4]

Combination of things today, that have unnerved me.

 

Firstly ......A conversation with a neighbour about another neighbour who has MS. A lady that I've never met.

Apparently her MS is "in an advanced stage" when I asked how long she has been diagnosed, I was

Told 5/6 years. I Myself have been diagnosed with RR 4 years in November.

This left me wondering how much time I have left, before I am regarded as being "in an advanced

Stage.

 

Secondly....... I asked My Consultant how I would know if/when I had moved to SPMS. To which he replied " your on the boarder" Dr Z is a man of few words. So the nurse jumps in "if your worried we will stop the medication (Rebif) you can continue with it until you are in a wheelchair"

Say it how it is I thought! Quickly putting it to the back of My mind.

 

Lastly........for the second month running the delivery of My drugs, have been messed up. it used to run like clock work. when I asked why this is happening. Bupa Home Care said I'd gone on to monthly prescriptions. where as I'd been on 6monthly. This has led me to thinking, are they getting ready to stop.

 

Guess My question is: How long before RR turns to SP. If it's about 4 years, does it mean that you

Could progress at this rate, through all the stages. If you even go through all the stages. Bet you can tell how Nieve/Daft I am. I know that everyone is different.......but!!

 

Sorry to ramble & go on. But I know tonight could be a long night, as this is just going round & round in my head. Usually I try & stay positive....honest.

Xx:-)

[Mal]

I used to try and think how long things will take before this and that happens ,

but even though i know its been moving faster than i would like it to , i try not to , plus you can't really

compare your self to other people who have ms , each case is different

 

so try to put wheel chairs and stuff out of your mind , if it happens and thats a big IF, deal with it then,

i was only diagnosed a couple of years ago , with what they said at the time was already progressive ,

which latter changed to progressive relapsing , so my fist worry was that i had missed out on treatment ,but then

was put on treatment because I'm still relapsing so i get the best of both worlds lol........but what I'm really saying is

I'm still active , i don't even use a stick , i still get out and about so the word "progressive " doesn't have to mean your going

to be going down hill fast

 

yeah thats right about the home care going from monthly to six monthly , i have my six months supply in the

fridge now

 

take care and stay positive !

Mal x

[Marina]

Firstly, I hope you won't mind, but I've removed the name of your neuro as we don't allow the names of our doctors and nurses etc. Some of them can take offence at being mentioned in forum topics.

 

Secondly, please don't worry... MS, more often than not, isn't as bad as it can sound and doesn't mean life in a wheelchair forever more. "Advanced stage" MS is much rarer than you might think. In that lady's case, she probably has a more severe PPMS. If you have RRMS, you don't get PPMS.

 

RRMS doesn't automatically change into SPMS. It's certainly not a given that everybody with RRMS will go on to SPMS. About 50% or less of RRMSers go on to SPMS, and it tends to about 15 or so years later. The rest don't get SPMS at all.

 

If someone does go on to SPMS, it could remain stable for ever more, or it could progress slowly. Everybody's different with their MS, there's no way of knowing how their MS will progress. Some people think being SP or PP is actually better than being RR as they no longer have to deal with the uncertainty of when a relapse might hit, and just remain as they are. You might find this topic of interest - although it's about PPMS, it can apply to SPMS too: http://ms-people.com/forum/topic/6604-positive-things-about-a- ppms- dx/

 

I'm SPMS and, quite frankly, I often wince when I read what some RRMSers go through; their symptoms and relapses can be far worse than what I have with my SPMS!

 

You might also want to read more about the different types of MS, to hopefully reassure yourself that it doesn't mean you'll progress to SPMS: http://ms-people.com/forum/links/category/3-types-of-ms/

 

As for BUPA and their prescription service, I'm afraid I know nothing about how it works, but it may be nothing more than something bureaucratic on their part.

 

All I can say about your MS nurse is ... find another!!!

[Scully]

Hello.

 

Thought I'd jump in with this one too.

 

I missed out all the RRMS ans SPMS without passing 'go' and went directly to PPMS. Primary Progressive......at the diagnosis consultation I could barely even spell Multipke Sclerosis so it meant nothing at the time...

 

Like most people, when I heard the diagnosis of MS I immediately thought and visualised a wheelchair...so I asked him when I would be confined to a wheelchair....his reply was " oh only about 4% of patients wind up in a wheelchair full time ". This was a top London consultant who specialises in MS.

 

This same consultant also reiterated that no two patients with MS are ever the same, regardless of the type of MS. So please don't try and set yourself against others.....there will always be 'helpful' souls who will scare the pants off you with horror stories.....ignore them, and get on with your life,....not theirs!

 

For my part, diagnosed with MS back in 2009/2010 I am still vertical! And intend to stay that way for as long as I can...I'd long decided that I wasn't going to be in that 4%!

 

I'd also add that 'stress' won't help at all. It's pointless worrying about things that may never happen huh?

 

Scully

Edited 22 May 2015, 11:10 am by Scully

[Nick]

Scully's advice is excellent, that is exactly how MS is! Diagnosed in 2007 I am 'technically' SPMS. I have now had the chance to meet and talk to many folk with MS and I have seen the difficulty of trying to understand your own MS. Concentrate on understanding diagnoses first, take that on board, continue to ask lots of questions and above all think about working with YOUR MS not other peoples. MS is a 'condition' that is specific to you and finding out how to live and work with YOUR MS is all that matters.

 

Nick

Edited 22 May 2015, 9:41 am by Nick

[MrAFudge]

wow, some brilliant insight there, which really puts my heart at ease, which is what i would think all of us crave, due to the uncertainness of ms

since my diagnosis its been scary to think of what could happen and this leads to me wasting what time i have now worrying, which only compounds the issue,

i turned to meditation myself, just clearing my mind for 20 minutes in the morning made for a far more enjoyable day, yes i was aware of my situation, but able to deal with it so much easier

whatever a persons vice, something that allows for less stress is always helpful,

and being here able to talk to everyone is great support too

[Nick]

A lot of help dealing with your MS comes from people with MS. It's kind of difficult to go that extra mile and 'embrace' the situation. The stacking up of the 'problem' and 'not knowing' what will happen in the future is where stress builds up. Methods of accepting stress and then reducing it can be achived in several ways. Medication is but one ( I use Citalopram) Meditation is another very good method ( I use a book called 'Zen and the Art of Motorcycle Maintenance' among others) and then there is Exercise. I can sometimes combine walking with 'thinking' ,you could say that is exercise and meditation. Of course to start with, you percive your 'Enemy' as MS and casual references to MS don't help. However there is a need to understand the problems you are facing and you need to also do that. Having a better understanding of MS is all part of the process that combine with these other things can make a HUGE difference.

 

Nick

[eliza]

Remember the saying worried to death, there must be some truth in that. I feel for you I am a worrier, I worried that I had got better not worse so they must have it wrong. I am 15 years after diagnosis, I take no DMD's . I was allergic to the one I was on. I was then passed to a rehab neuro who never tried meon any other. I take LDN and Sativex, Cant be that though as the professionals dont think it helps.

 

You should not listen to neighbours especially as you may hear other people who know someone who is at later stages, in your town they may be the same person they are talking about. You wont hear about the people with MS that are doing well. because that is not gossip or interesting.

 

I have given up telling people unless necessary, I have had many people say well you dont look like you have MS????? or are you sure you have not got ME. I keep trying to find people who are as well as me. but maybe they are too busy working or having fun, A friend of mine told me of a relative of theirs with who goes skiing regulary and this person is not young and had to come back early last time due to an accident, it wasnt their accident it was their partner who does not have MS.

 

Accept you have MS and remember the past is history the future a mystery. or MStery Get on with having some good nights sleep. I know often you try and get on with things then your own body says, hey I am still here. I have been under a lot of stress lately and I keep getting strange head pains and an on and off blurry eye, I know its damage done in my early days of MS So I need to not worry on top of the stress I have had and hopefully things will be fine for me and you for another 15 years.