Hi everyone. I am trying to figure out - what to expect with MS progression.
I couldnt google anything definitive. Could you guys explain whats going to happen when MS gets to a crippling stage?
Everytime I start think of it the image of Hawking pops in my head and it shocks me proper…
How bad is it “usually” gets? And how long it takes to get there?
I got symptoms for 12 yrs and the final diagnosis is pending spinal tap (which should happen in April)…
There are no rules when it comes to MS. People can be considerably disabled when diagnosed with any form of MS. Equally, progressive MS need not equal disability.
Relapsing Remitting MS could lead a person to be slightly or considerably disabled, equally SP or PP.
You can’t equate a particular form of MS to a given disability, or level of disability. There are people with RRMS who’ve been disability free for 15 years or more, any people with RR disabled after the same length of time. The same is true of SP or PP.
So assuming you are diagnosed with MS, the form of MS will not give you any clues as to how it will affect you.
By the way, Stephen Hawking had Motor Neurone Disease (aka ALS or Lou Gehrig’s disease), not MS. His kind of disability would be quite unusual in a person with MS.
Sue
unfortunately no answer to your question - I think most of us adapt (partly!) to the uncertainty - we take each day at a time - hope things will be o.k. the next day but somewhere in the back of our mind is the worry that things may not go well.
Sadly NO is the answer to your question. The variety of symptoms and variations in human physiology combined with the astronomically vast numbers of nerves and connections involved with MS mean that although there can be similarities between people who have MS there are no absolutes or definites. It is pretty natural to want answers and to be scared by the uncertainties. In my opinion you should concentrate on the things that you can influence, like how you look after yourself and building the best network of family, friends and professionals to help you. Make the best of the good bits and deal with stuff as , when and IF it comes.
All the best Mick
In a word no. Reading the posts on any of the threads here will tell you we ALL got a different story. what happens, when it happens, how it affects you. Just remeber Stephen Hawking did not HAVe MS, but motor neurone disease. Even so he was a bloody genius!
Hi, Im gonna join in with the other responses and tell you; yes, there is a list, but simple it certainly aint! Looking at worst case scenario is only going to depress you…but theres nothing wrong with doing some future proofing eg getting a home suited to one floor living and easy access I know a bloke who has PPMS like me and has had it for just as long.(22 years).but he is walking and Im not… others may have sight problems with any type of MS…I havent had any. I have a supra pubic catheter due to incontinence....others havent. So you see, chuck, there is no definite way MS can go. Spinal tap…what we call lumber puncture (are you in US?) may not show proof of MS. It didn’t in me for years. Live your life the best way you can. Bouds xx
One of my besties had RRMS. She was about 73 I think way over retirement age and worked everyday. she travelled a lot to europe selling some fancy photocopy stuff (i usually switched off to the technics of it lol). she had been on DMD at some point. she was fab really funny.
One day not so long ago she got a back ache after a year nearly i practically pushed her to the doctors as she thought it was her MS and was struggling to work.
It sadly turned out to be bone cancer and she survied six months until we lost her. If she hadnt had that she would still be travelling now.
EVERYONE has MS different, there are no lists to progression. some people can have 1 lesion on spine or brain and be in a wheelchair, others can have a lot and be walking.
some of it too is down to the individual and how they cope with it. My neuro said why are you in a wheelchair? you dont need to be. I said because i cant walk far, he said there is no reason why you cant walk far.
well I looked at him and said well maybe if you touch my head i will have a miracle but i cat walk far, its like when i try i hit a wall. so not even neurologist can predict a list.
never worry about the end, just enjoy the journey and have lots of fun. life is so short i think a lot of MSERS end up with other things far worse to contend with like cancers and diabetes etc.
There is a lot of research out there with ‘averages’ etc but that is what they are … very hard to predict with MS as still so little is known about its triggers.
There is the oft quoted ‘MS life expectancy is only marginally shorter than the general population, at about 7 years less’. The UK NHS however quote 7 - 14 years less. The 7 years is an average, with some countries reporting a larger number, and some a smaller number. What is rarely reported though is the average life duration from diagnosis - this is reported at 25-35 years. So yes, if someone is diagnosed at 50, they will almost certainly exceed the expected life age for their country, but someone diagnosed at 25 will probably not. On ‘average’ though, the MS cohorts will only have a life expectancy 7 (or 7-14 years) less than the general population but this will almost certainly be dependent upon when the person is diagnosed.
There is also the strange comment that MS doesn’t kill; I say strange because, if someone has AIDs and dies of a complication of the disease (e.g. pneumonia) it is said that they died of AIDs related complications, but if someone has MS but dies of pneumonia that are said to have died of pneumonia. Deaths due to MS are underreported.
There is still a lot of research being carried out on MS and over time we may start to understand the disease and its progression better. But, as for living your life, make the most of each day and take the experiences when you can and whilst your body allows it. My wife and I had read lots of articles on progression, and picked up on the number that the average time from diagnosis to SPMS from RRMS was 15-20 years. As my wife started to see and feel the changes and we reached the 15 year mark we packed in our jobs and took 12 months off to travel. We knew we couldn’t wait any longer; this was a good call as within 2 years she was using a stick, 3 years using a wheelchair out and within 7 years was technically housebound (although I obviously take her out in her chair), needs 24/7 care and at EDSS 8-8.5
Live the life you have today and whilst you shouldn’t dwell on what ‘might’ happen in the future, don’t lose the experiences offered to you today. Try and live life with no regrets.
Excellent post Freddy.
There must be people who die of MS, otherwise there wouldn’t be a number 10 on the EDSS (death due to MS).
You made a really good call to travel while you could. I missed out on a few things because I did wait. But am trying to improve on that!
Sue