Not me, but my brother. He’s 12 months older than me.

Diagnosed last week as having MS. He’s gone from doing a physical job (plumber) to being unable to walk in about 6 weeks.

All the medico’s are non-committal when pressed on what the next steps are. Is this the low point and tings will improve or is this the new reality for him?

Does anyone have any real world experience of how these things can pan out?

They’ll be non-commital for a reason, with MS it’s just impossible to give any accurate “how and when” things are going to turn.
The best you can do is manage the condition with both the appropriate medication and a lot of listening to your body (i.e. avoiding any triggers).
Life *isn’t* over with MS, but you do need to adjust to your new limits.
Assuming he is in the remit/relapse stage currently, it’s impossible to say how long his current relapse will last – it’s very much up to the individual.
Look at Jack Osbourne for example…

My 25 year old cousin was diagnosed at 19. She started training to be a doctor at 20. Life is still pretty normal for her, one of here arms is a little weak and she now wears glasses but generally it is progressing quite slow and life is normal for her. She’ll be fully qualified in another 3 years and I’ve no doubt she’ll have the same career prospects as any other trainee doctor at this stage. As mentioned above, there is absolutely no way to say what will happen next, just live from day to day. She has physio and takes a variety of meds. I guess she could have another episode which could change things but until/if/when it happens it’s not worth getting to concerned about as it really could manifest itself an any number of unexpected ways.

My brother was also diagnosed with MS – 18 months ago now. He lives in South America, so I suspect his story will be very different to your brothers, but I can tell you how it is going with him in the hope that it helps…

My brother is in IT and he first realised that something was wrong when he appeared to have constant pins and needles in his arms and hands. As with your brother he appeared to deteriorate very quickly, from being able to work to being unable to type in a few weeks, with no feeling in his fingers. Luckily he was diagnosed quickly and under went a whole load of tests. As this point he was very low mentally. With MS there is a huge amount of uncertainty about when the next episode will be, how it will affect, what the extent of the recovery will be.

In my brothers case he has had some great treatment, he recovered well from the first episode, and regained almost all of the sensitivity in his hands, with in a few weeks he was able to type (work) again. In the first few months he had another couple of minor episodes, which he even he could see the funny side of (at one point he lost feeling in he waist / groin area so could never tell if he was wearing trousers or pants). He is now on a medication which seems to be holding the episodes at bay, but it is to some extent a waiting game to see what happens. He is now very accepting of the condition although I still find it hard (he is 45, 3 years older than me).

I don’t know what stage / how your brother will be, but to my understanding MS is a series of ‘episodes’ which affect the nervous system. You do recover from each episode, but never completely – there is always some damage left. The aim is to find a form of medication that slows / halts the frequency of the episodes, and, as above try to avoid any triggers. In my brothers case he seems to have found that and hasn’t had another episode for nearly a year. The drugs all have side effects (which also vary) so it is about finding a balance that suits your brother. It is the uncertainty which my brother found hard, he read and learned all he could about the condition and seems to be in a relatively good place with it now, but it will be different for everyone.

I wish him the best of luck.

Firstly, sorry it’s an awful thing to get for anyone.

I’m afraid MS is very unpredictable every consultant we have seen says “no one case is the same”

My wife has had MS (diagnosed) for 26 years she only had a short while in the relapse/remit phase and has been in secondary progressive ever since. For her it’s a gradual loss of everything and I mean everything 🙁

Sorry for the slightly black mood of the post, but its wiped her quality of life out.

As above, there are 4 different types, two of which are not good at all, they’ll need to have a number of episodes before the docs can determine which type of MS they have.

OP, has your brother had any treatment yet? I’m sure he’ll be given steroids initially and then be prescribed medication to help the condition day to day. MS affects people if different ways. I know a fella who thought he was showing signs of bell’s palsy and it turned out to be MS, eight years on and he’s still do a physical job as an electricians mate. Jack Osbourne lost sight in one eye that lead to his diagnosis and as far as I can tell he is as active as he’s ever been. Me, I went to the doctors thinking I had bad circulation in my legs and ten weeks later I was diagnosed. This was four years ago and I still work twelve hour shifts. Sadly for me mountain biking was the first thing to go. I have inflammation on my spinal column (myeline sheath), my brain and at the base of my neck. This means I can’t get the ‘power down’ and my balance is shot. Road biking has help me maintain a level of fitness. Life doesn’t end with MS, it just needs some adjustments.

He was taken into hospital last Friday. He had been promised various treatments at the next appointment (steroids, infusions etc.) but an MS nurse visited him at home and couldn’t believe he’d been left to get in that state.

So, a short ambu ride later and he’s in for ‘about a week’, providing he shows some improvement.

The neurologist he saw last week told him to “forget working, forget driving, and there’s no point keeping your motorbike” which isn’t a great indicator that things are going to get very much better very quickly.

Sorry to say but that sounds like Primary Progressive!

Where abouts in the UK are you?

Just checked your profile, has he been refered to the Walton centre?

My grandfather switched over to a gluten free diet (not sure when but he got MS in his mid 30s) and only in his late 70s did he have to switch from walking stick to wheelchair. I have no idea if there’s a medical reason behind the gluten free thing. I had a client in my last job whose company were working on a medicine based on goat antibodies that they were claiming could reverse some MS symptoms – hopefully something will come of that. All the best to him.

I have to agree with MrOvershoot although it’s early days for your brother. Historically it affects women worse than men. The steroid treatment is very effective in most cases and will level things out. Daily meds will help reduce the impact of further relapses. I’ve only had one minor flair-up in the four years since my diagnosis. I feel quite lucky that it’s under control at the moment. In the main it a physical condition but your mental strength is equally important. If you have a good support network it will make a huge difference.

I have relapsing remitting MS, was diagnosed about 18 months ago (I’m 27 now). For me it hasn’t affected me too badly, I usually just get a numb and slightly weak leg for a few weeks when I relapse. Finger tips have permanent loss of some feeling though.

Sorry to say but that sounds like Primary Progressive!

I really hope for his sake that it isn’t, I’m quite terrified of progressing into secondary progressive. I’ve been following research loosely and am remaining hopeful (not much else to do) that they’ll find a wait to halt it and repair nerves!

I don’t have any experience with mine being nearly as severe but I’m happy to answer any questions from a “I have it” POV.

A friend was diagnosed with MS a few years ago. He has been on a clinical trial for a new treatment and has now been in remission for a good couple of years(he’s back to climbing E grades, and also regularly mountainbikes again). I will email him now and find out the name of the treatment. It may not be relevant, so please don’t get hopes up as I know zero about MS.

http://www.mssociety.org.uk/ms-research/new-and-potential-treatments/lemtrada-alemtuzumab-campath
Hopefully helpful.

I had a change in medication in Dec 2012. I’d be injecting once a week (in my thigh) with Interferon Beta 1a for eighteen months but my doctor didn’t think it was doing enough. I’m now on Gilenya which is a capsule taken once a day. It’s a new drug and appears to be working for me. Taking a pill once a day is better than shoving a needle in your leg. Fatigue management is a big thing for me. I have to be careful in how I get about. My left hip and leg are my weak points and walking any distance can be tiring. I use a stick which makes all the difference. Overall you learn to live with it. If I was married with kids I’d perhaps have a different take on it but it’s the hand I’ve been dealt so no stress. Live life!

Sorry if I sounded a bit blunt earlier, a combination of early hours call out and my frustration of the shit hand my wife has been dealt.

As others have said its fatigue that spirals the symptoms out of control, that and heat in my wife’s case.
Thankfully for those with relapse/remit there are far more meds & research going on. I get the feeling that those with secondary progressive are seen as lost causes?

Seeing the person you love reduced to a shadow of their former self really screws you up inside along with the fatigue of being a carer & working full time.

My ex wife has MS. Diagnosed in 1998. If the OP hasn’t already picked up on this there are essentially (as I understand it), 3 types of MS, Relapsing/Remitting, Secondary Progressive and Primary Progressive. MS is essentially a condition where the body’s immune system turns on itself, in the case of MS causing lesions on the brain that inpair motor and nuroligical function and also attacking the Myelin sheath that encases all our nerves (think brake cable housing). Without the Myelin Sheath electrical impulses can’t travel properly along the nerves. This causes loss of motor function and/or spasms and pain.

People diagnosed with relapsing/remitting can often lead fairly normal lives. Relapsing/remitting refers to the fact that the person who has MS will sometimes relapse and experience very powerful symptoms. This attack can last for a few days or a few weeks. In the case of my ex wife she lost her sight in one relapse, but she usually gets hit by pain in her extremities and clinical fatigue, both of which she experiences, to a lesser extent, on a daily basis anyway. The second thing with relaxing/remitting is this factor of daily symptoms. Most sufferers have to deal with bad fatigue, physical weakness and pain to a greater or lesser extent. Fatigue is probably the most constant and is often brought on by heat and/or stress.

To my knowledge there is no cure as such for MS. Until recently the main drug that people with Relapsing/Remitting MS took was Beta Interferon. This was one of many “handbrake” drugs, so described because they don’t cure, or even stop, the disease they just slow down its progression. The problem with Beta Interferon is it often has quite nasty side effects and whilst it only works in 30% of the cases that are prescribed it, it is impossible to tell who it is having an effect on until it has been taken for a couple of years and severity/frequency of relapses can be compared.

The new drus such as Gilenya certainly seem to be an improvement. They have a better success rate, milder side effects (in most cases) and seem to slow the progression of the condition down even more. My ex wife has been taking it now for a year.

The biggest problem with Relapsing/Remitting is that at any time it can morph into either Secondary Progressive or Primary Progressive. People can also be diagnosed with one of these without ever having R/R. The simple fact is that the prognosis for anyone diagnosed with either of these two confitions is not good. As I understand it these conditions mean that, unlike Relapsing/Remitting where you will be “relatively” normal between relapses and the severity of each relapse won’t necessarily increase, the condition of the person diagnosed will slowly and surely (in the case of SP) and quite quickly (in the case of PP) get worse, leading to partial or total incapacitation and in some cases, death.

I don’t know what the breakdown is in terms of percentages that have each type of the condition, but I do know that the significant majority of people diagnosed with MS have Relapsing/Remitting and the majority of them won’t progress to the more severe forms of the condition.

MS is a nasty condition that can impact significantly on people’s lives (both those who have it and those who are closest to them). However, it is possible for the majority of people with the condition to live relatively normal lives and it does seem as if modern medicine is making significant strides in terms of the understanding of, treatment and, eventually, the cure of it.

I’m pretty sure that what I’ve written is substantially correct, but I’m more than happy to be set to rights by people who know more about this than me.

Finally, I wish your brother, you and everyone else who has posted and is effected by this condition all the best

Thought this was going to be an anti-Apple thread 🙁

We have been told that there is a possibility of prim/prog or even malignant MS. But no-one seems to want to have a vague stab at which or what.

It seems that how things change or develop gives you the diagnosis.

Great

My ex boss senior manager in the hhs had it, she started first by dropping cups of tea, couldnt grip, slightly wobbly, she struggled on to get a diagnmosis, went back and forth to the gp,consultants, eventually she got a proper diagnosis and she was relieved and upset at the same time as she cared for MS sufferers.
She lost her licence after a few near mises with non movable objects,her health deteriated slowly and bits shut down, eyesight,speech and mobility and eventually she sadly died about 10 years latter.

Now my cousin has the same thing and again she struggled for a diagnosis and treatment to ease the symptoms.

Some people are affectedd by hot or cold weather, or certain foods, try the various MS support groups for help and advice.

My Mum had MS for 24 years. It started off as relapsing/remitting, then progressed to progressive in the last 5years or so. When she was initially diagnosed there was some advice to take extra vitamin D and E (not sure if that’s still out there). She did have steroids initially, both as infusions in hospital and several courses of tablets.

What people sometimes don’t realise is the effect on cognitive function. She became very forgetful and unable to reason. This wasn’t taken into account by some people. Your brother won’t be like this immediately, but be prepared just in case.

Care and support are patchy. The MS society had no involvement with my mum, and in the 24 yrs she only saw the MS nurse 3 times. Her doctors didn’t really do much and put everything down to her MS. Sadly this meant the Bronchial Pneumonia she died of a fortnight ago wasn’t picked up. As an autoimmune disease it does mean a weakened immune system, and this was a factor.

Sorry to paint a grim picture, but be prepared to fight and don’t take no for an answer. The new drug therapies have had some good outcomes. Access the local carers support groups (only latterly used by my parents) and get advice on the monetary support he will be entitled too. He’ll need this and should find it may help him continue a ‘normal’ life for as long as possible.

Good luck and hope that your brother and your family are supported through this x

xcube your very right on the cognitive function,
my wife was way brighter than me (good 2:1 degree) yet now she struggles with what day it is & we have had some bizarre arguments in the middle of the night as to why I’m not giving her breakfast. She’s 46 BTW.
The vit D stuff still stands IIRC and I understand that Scotland (the world hot spot for MS) is/has looked at upping the vit D levels in basic foodstuffs?

I really can’t begin to express how frustrating & soul destroying the treatment of MS can be in the UK, initially my wife was diagnosed as first a malinger (still eats me up this one) & secondly as having epilepsy and was put on scary levels of drugs that caused a massive dependency for years & then finally “Oh yes you had classic MS symptoms all along”
In the last 3 decades we have met some fantastic medical people and some truly shocking idiots that I doubt could hold a crayon the right way round.
I fear its too late for my wife for any meaningful treatment as everything seems to take forever & what can you say to someone who says “its not worth living like this”

two of my friends mothers have ms and it is tragic to see such strong active women deteriorate in such a way.
both of them are very careful with their diet on top of taking their medication. they both claim that certain foodgroups such as gluten and dairy have a negative effect and both drink large quantities of fresh vegetable juice twice a day which they say helps alot.
i think its wise to attack diseases like this from multiple angles eg medicine, diet, environment.
good luck for your brother, hope he can stabilize it

My mum got diagnosed a few years ago after experiencing numbness in her arms. She spent a few months building the courage to tell me and my brother. When she eventually told us, I immediately told her it was her own fault for spending so much money in Marks and Spencer’s. Strangely, I think this was a better response than she ever expected. Unless you knew her well, you wouldn’t notice anything wrong. She gets tired if she’s on her feet all day. She still cycles to work and manages the occasional 20 miler on her road bike. More than most women in their late 50s manage.
It’s a different experience for everyone and so far my mums hasn’t been difficult. I think you just learn to adjust your expectations and adjust your lifestyle so as to accommodate it. We have learnt that we all have a role to play in her support network. I like to research the facts and discuss them when she’s ready to listen, my brother tends to offer distractions and my dad does what husbands are supposed to. It takes patience,but my mums strength of character helps her no end. She never seems frightened or upset about her condition. She just gets on with things at a pace she can manage.
I hope you get some answers soon. You’ll have to make some allowances and adjustments. It probably seems pretty dire and drastic right now, but once you have a better understanding of what to expect it will get easier. There are some fantastic resources and support groups around for ms. It’s worth looking up. I hope you find our responses on here helpful and I wish your brother the very best of luck.

My wife was diagnosed with MS about 2 years ago. It was a massive shock to us both (especially as the news was delivered by over the phone to her whilst at work FFS!).

Anyway, she’s had multiple MRI scans and meetings with specialists and at the moment she’s stable. Took a while to get an actual diagnosis of RR MS. In terms of day to day, she’s fine. Very occasionally she struggles to find words or might get a bit wobbly but she’s doing brilliantly all things considered.

One thing I noted above and which has been quite the opposite to us is the support given by the NHS which has been excellent. Regular visits to/from nurses, neurologists, MS specialists, physio etc etc. Really cannot fault the support. The MS Society I think you need to speak to to get support – don’t expect them to just turn up at your doorstep one day and fix everything.

A work colleague was also diagnosed with MS (again after years of doctors trying to figure out what was wrong with him) within weeks of my wife being diagnosed. He’s been left virtually housebound by it but via the MS Society gets away on free holidays and all sorts – the support he gets from them can’t be faulted.

Its also interesting to read about medication. My wife was offered disease modifying drugs as part of a trial but the specialist told her that in her case there wasn’t really any need for them in her current state. My cousin lives in the states and whilst also suffering from mild RR MS as my wife is, was on medication right from the start.

It is a horrid thing though and seems to slip under most peoples radar in terms of what it is/how it affects people etc.

OP – all the best for your brother and I can understand the pain you’re probably going through. A lot of it is simply not knowing whats around the corner.

Life really deals us a shit hand sometimes 🙁

DaveyBoyWonder.

Speak to the specialist and insist on starting the disease modifying drugs. The sooner the better. I can’t fault the support and care I’ve had from the NHS. Having read some of the previous post I feel lucky to be receiving the level of care that I am.

Well my brother is out of hospital; because they “don’t have the funding to continue treatment”

He’s had a course of steroids and he is lined up for a dose of Tysabri (I think) once the cheque has cleared.

He’s been released because the local authority have delivered a trolley with shelves so he can carry food from his kitchen.

Hopeless.

Harris – you should consider yourself extremely lucky to be getting good treatment; it clearly isn’t the standard.