diagnosed with MS

[Patrick Bateman]

davhill said:

Hi,

Welcome to the MS Owner's Club!

Pardon the levity but that's what works for me.

I was diagnosed ten years ago, after kicking off with optic neuritis. I found myself looking through steam that wasn't there and O.N. is a "harbinger of MS'. It turned out I had got MS, and have counted 'exacerbations' (flare ups) about once a year since.

So, here's what we're looking at...

Multiple Sclerosis (it means 'many scars') works like this. Imagine that something is dissolving the insulation from your car's wiring. You'd expect short circuits, flickering lights and funny readings on the dash. Substitute your nerves for 'wiring' and myelin sheaths for 'insulation'. In fact, your own immune system is the 'something' that's attacking your 'wiring'.

The attacked myelin breaks down and the conductive 'wires' of your nervous systems - the axons - start going iffy. Hence funny signals - numbness, pain, odd eyesight, balance, hearing, etc. If the axons get damaged, that nerve function can be permanently affected. For example, my left eye vision lacks detail and I score 1/12 on the colour blindness test. Axonal damage can actually repair itself but it takes a long, long time.

There are three basic kinds of MS...

Relapsing/remitting: 'flare-ups' occur from time to time but it's all quiet inbetween.

Primary progressive: from the start there are no periods of remission - the trend is downhill.

Secondary progressive: you have relapsing/remitting MS, usually for a decade or more. Then the trend goes downhill.

You'll note there are mentions of 'usually' and 'can' here. The bottom line is that MS is a lottery; prognosis comes from statistics, each case is different.

Fixing it

MS is incurable. The steroids you've been prescribed will help with local inflammation but they won't repair any damage.

I had the recommended DMT (Disease Modifying Therapy) drugs. I injected once a week. In the end, I came off the drug (Avonex) because I was getting 'flu' once a week for a treatment approx 30% efficient. But I'm me and you're you. Also, research is ongoing - there have been several new treatments approved since my diagnosis.

Attitude

Top me , the most important thing is attitude. OK, so fate selected me to have MS. Was/am I screwed? Not yet. I'm also in the throes of coming out of a st relationship - it helps to have a great partner. My view is...it could be worse. And it could be far, far worse. Don't be downhearted - no-one ever died of MS.

Education is hugely important. It's worth finding out all you can about your new foe. Try...

http://www.mssociety.org.uk/what-is-ms

http://www.mstrust.org.uk/

If you look around, you'll find there is also locally-based support. This can be very helpful, especially at the start.

All the best with, mate. And never forget - it really could be far worse. Terminal illness, blindness, quadaraplegia , the last stages of understeer with a brick wall in your path - you have none of these. You're therefore relatively lucky - fk the naysayers, they've no idea what they're on about.

Sorry but that did raise a smile.

All the best qube.

[davhill]

Patrick Bateman said:

Sorry but that did raise a smile.

All the best qube.

Well, it is a car forum!

Qube-The latest research from the MS Trust says,'Only 12% of MS patients get full info at diagnosis.'

The trust is working on a new resource called Making Sense of MS. You can take a look at www.mstrust.org.uk/msoms

I know you aren't yet diagnosed but forewarned/forearmed innit?

[qube_TA]

That MSTrust site makes for fairly depressing reading as it suggests a life I can't relate to.

My current mindset is one of bks to all of that! Will just crack on as before even if it means I'm going to feel like crap doing it.

[davhill]

Much as I do, apart from the occasional visit to MS nurse or consultant. In fact, nursie makes a good point. If something hurts or isn''t working properly, don't automatically blame the MS. If you need proof of our insanely complex physiology, just Google 'Human Anatomy'.

I just carry on regardless to the greatest possible extent. Methinks you'll probably do the same.

[mph1977]

qube_TA said:

That MSTrust site makes for fairly depressing reading as it suggests a life I can't relate to.

My current mindset is one of bks to all of that! Will just crack on as before even if it means I'm going to feel like crap doing it.

MS isnt an area i have a great understanding of, but having worked for a number of years with a patient population where the vast majority of patients have had a life changing diagnosis - working in a Tertiary Spinal (cord) Injury unit ( the lucky few otherwise were people who had unstable factures but no nurological damage and were either fixed by the clever neurosurgeons or let the consultants I worked with bolt a frame to their head to stop if from falling off while the fracture healed... )

there is a somatic component regardless of your disease progression , but be aware and balance things - take the advice from peer support within the community of people with MS and from your COnsultant / specialist nurse/ physio /OT

in Spinal Injuries we generally took the view with paraplegic patients that the aim of rehab was for the vast majority of people ot allow them to get back to their old life with adapations ( the few that won't were a minority of serious sports people ( plus perhaps the odd pro or near pro dancer) - but it would be a case of substitution ... certainly most other things are do-able just need a little bit of thought ( looks desperately for a link to the youtube video of a the guy doing skateboard type tricks in a 'bowl in a lightweight chair ) slightly different view takenwith most tetraplegic patients becasue of the greater loss of function

but back to the balance bit - the SCI community now has a lot of people injured 30 -60 years ago who have outlived the life expectancy projectiosn ofat the time of injury and we areseeing a who new raft of difficulties as these people have knackered their shoulders thorowing themselves about doing transfers without slideboards etc ...

[TheBALDpuma]

Just saw This on FB and thought of this thread.

[sanf]

qube_TA said:

That MSTrust site makes for fairly depressing reading as it suggests a life I can't relate to.

My current mindset is one of bks to all of that! Will just crack on as before even if it means I'm going to feel like crap doing it.

Be very careful what you read. I was diagnosed in 2005 - out of the blue for me. Knowing what I do now I had my first relapse around 2000 - at the age of 25. I was diagnosed with Relapsing & Remitting MS - so I was 30 when diagnosed. My world did somewhat fall apart, and wife, mum, family found it very hard to take. Reading too much on the web made it worse....

However once life settled down and I re-focused, you soon realise actually, while it can be pretty rough on the whole there are far worse things out there. Almost 9 years down the line and nothing has changed. I have a few minor symptons - which are quite annoying, but that is it. No medication. Just positive attitude and a desire to enjoy life.

Yes one day as I get older it may make life more challenging, but equally it may not - it's not the kind of illness that follows a set path - it does what it wants, when it wants. If you have any niggles, you'll soon get used to them and work around them. Most people that know me don't a clue about my diagnosis.

Ultimately be positive, read things carefully, but don't get too downhearted and obsessed with the crap side of it - be realistic. Carry on as normal (the only tweaks I have made as I approach 40) is stay a bit fitter and do more motorsport.....

There are a lot of us out there who you can turn to for advice - but the illness is likely to be unique to you - and hopefully not too bad. Take some time - get your head around the diagnosis and the shock, this will eventually subside and you will be able to get a focus and hopefully things will seem normal again and you will realise life moves on...and so do you. Stay positive.

Having cheerfully diagnosed me - which was shock anyway - the last thing my neuro said was - 'chin up just because you have MS, it doesn't stop you getting all the other crap out there such as cancer - things could be far worse....'

Quite well put in a slightly dark way. If you want a chat via PM please feel free.

[stuartmmcfc]

.This sounds awful, and I'm almost ashamed to admit it, but I will
When I was diagnosed, I was single but quite active on the internet dating scene. I didn't think it was fair to get involved with someone with out being completely honest about the situation.
I was careful not to go one about it but if they asked I was quite happy to talk about my MS.
This had a bizarre effect.
Women said things like "you're so brave" and " it's so refreshing to meet a man who can talk about his feelings" etc
Suddenly my "hit rate" went sky high
I then used my illness as a pulling tool (not sympathy vote, that would have been a bit pathetic) and became the envy of many friends.
So, it just goes to show that every clouds got a silver lining and you must always find the positive in any situation- you never know what might be the unexpected bonuses

[qube_TA]

I'm fortunate to not be single, my wife is ace.

If I was trying to date it would be struggle as one of the symptoms I've got is a lead-free pencil.

Those little smarties are £210 for 16 too!

I start treatment on Monday, so looking forward to seeing if it makes a difference.

[stuartmmcfc]

qube_TA said:

I'm fortunate to not be single, my wife is ace.

If I was trying to date it would be struggle as one of the symptoms I've got is a lead-free pencil.

Those little smarties are £210 for 16 too!

I start treatment on Monday, so looking forward to seeing if it makes a difference.

My Wife's ace as well. That makes life much easier
If you're talking about Viagra (?) then you can get them free on prescription if you've got MS.
I've got a problem with my left eye at the moment so I'm not driving for a few weeks.
Quite enjoying the rest

[stuartmmcfc]

qube_TA said:

I start treatment on Monday, so looking forward to seeing if it makes a difference.

What treatment are you starting?

[Richyboy]

You can get sativex for MS can't you (or you can ask for it and not get told off.)

Edited by Richyboy on Saturday 29th November 21:36

[stuartmmcfc]

Sativex is prescribed for spascidity, mainly, in MS. If you don't have these symptoms then it's not really the right drug.
My MS Nurse is , generally, not a big fan of it as she believes the potential side effects outweigh the benefits and there are other drugs available which are more suitable in most cases.
Post code lottery.

[davhill]

stuartmmcfc said:

Sativex is prescribed for spascidity, mainly, in MS. If you don't have these symptoms then it's not really the right drug.
My MS Nurse is , generally, not a big fan of it as she believes the potential side effects outweigh the benefits and there are other drugs available which are more suitable in most cases.
Post code lottery.

The drugs of choice tend to be DMTs - Disease Modifying Therapies. There are newer ones in tablet form but many are injected, either subcutaneously (under the skin) or intramusclularly (into a muscle).

The aim is to slow down the progress of MS. I used Avonex (intramuscular) for about 18 months. The consultant and I decided that the side effects (flu every Sunday) were too costly for the benefits so I came off it about a year ago. I just had an exacerbation (flare-up), affect my eyesight on the left as usual, but one was overdue anyway.

At the start, I was given the choice of drug. I chose the Avonex because it was a once-weekly jab, not every two or three days. You soon become used to injecting but I elected to use an injector - there's a natural resistance to sticking yourself with a big pin! This device accepted the syringe (lock & load)...twist the safety collar, press the button and the needle's fully in in a flash. The latest doses came in a plastic injector with which you never even see the needle...press the button and it does the rest.

There's more DMT info here.

http://www.mayoclinicproceedings.org/article/S0025...

[qube_TA]

stuartmmcfc said:

qube_TA said:

I start treatment on Monday, so looking forward to seeing if it makes a difference.

What treatment are you starting?

Just steroids for now, not specifically MS drugs yet as they're still testing.

Had my first (and second) lumbar puncture, they're fun

[davhill]

The steroids promote healing in that they speed it up, but they don't make you heal more. I had the choice for my optic neuritis. Didn't fancy a jab behind the eye!

[stuartmmcfc]

Happy Christmas OP, hope it's been good

[FBP1]

My other half was diagnosed with RRMS just over 11 years ago so,we have some experience of what you are going through now.

Here's our story and it is ours, not just her's.

After a couple of years of odd events (trapped nerve in the arm? Blurred vision in one eye? Fatigue? Epic headaches?) we saw a specialist who did various tests including MRis and he basically said that she wasn't technically suffering from MS yet as there are, I think, 9 "ticks in the box" and we were at about 6 at that point but he did say that " if you were to ask me what I think you have then it would be MS". At the time I was a bit pi55ed off with him as it felt like he was being a bit doom and gloom, but I realised later that he was basically preparing us for it.

We then had our first child via IVF. This was despite the IVf specialist asking if she had had any neurological events - we said yes and that it "might" turn out to be MS. She said, in response to our confirmation of the previous events, that we probably shouldnt go through with it as we shouldn't underestimate the strain that a new baby can put on someone with MS. We talked about it, but my wife wanted to go through with it- so we did. Our healthy baby girl was shortly followed by a natural baby boy and my other half was fine throughout, despite a couple of small exacerbations e.g. at my boys christening she dropped a few things and stumbled quite a bit. This is relevant in that there is probably nothing more challenging than pregnancy/ childbirth ( except Man flu )

She has a very stoic approach to matters, she didnt want to read the web or to go on the MS trust site or the like. That was left to me - she was happy for me to read it and present a précis of the main points which also allowed me to edit out alarming potential issues where I thought necessary ( which she realised I was doing, but was also happy with). The downside is that I was left pretty upset at the time as you can only see the worst case scenarios when you first read it, but then I wasn't the one suffering directly with it so it seemed like a way to share some of the burden

However, what I missed initially was that there is no standard prognosis for people with MS; there are over 50 different symptoms of which serious fatigue is probably common on, and each persons experience is probably at least as varied.

85% of people get RRMS, with a small minority getting primary progressive. Around 2/3rds of RRMS people will eventually go secondary progressive, a small minority maybe never have another event (benign MS) and some go straight to primary progressive.

In our case, post diagnosis, my wife took a "let's ignore it as much as possible approach", apart from starting on one of the 3 main disease modifying therapies - in her case a daily injection of Copaxone ( Glatiramer Acetate). There is increasing evidence that the earlier you start this the better in the long run. We went with Copaxone as it doesn't seem to have the same antibody generating effect as the interferons nor the flu like feelings post injections.

She also believes in Vitamin D supplements as well - Ms seems to be linked to some extent to Vitamin D - there is a much higher prevalence of it in the temperate to polar regions than there is near the equator- and there is a high correlation between low Vit D and attacks. She takes circa 4-5 times the reccomended UK limit each day and spends a lot of time in the sun when she can. No real side effects at that level as it is regarded as safe up to 10 times the daily limit. It doesn't hurt and it might just help- she has certainly had less attacks over the last few years since she started taking it

Cutting a long story short, my other half, who has a demanding job as a City based lawyer, has some symptoms now like some left side numbness, fatigue and some localised muscle weakness, amongst several other symptoms that come and go, but she has fought it with Pilates classes and fitness training to compensate for any weakness and by taking up running - which she had never done in her life! The major change in our live is that she goes to bed earlier than she used to more often but that is because she is careful to conserve her energy when can. She's still up for late nights just not to our previous extent but then we are getting older plus kids etc anyway.

As I type she is just back from a 10 k run ( she ran several 10 k road races in the summer), she is now lighter/ fitter than she was when we got married 19 years ago and no one would ever know that there is anything wrong with her. We are off skiing in Feb, where I will struggle to keep up with her...

My point is that it is not a death sentence; it varies between every person, and a positive mental and physical approach definitely helps. Re Bupa- it's not helpful with Ms other than during the initial diagnosis phase - you get to see a consultant more quickly - after that the NHS is absolutely brilliant. You don't hear that often these days, but it's true.

Get yourself under an MS consultant and your MS nurse who is a specialist in their own right. The latter is probably the most important person you will need over time as they are the ones you can call, they are the people who get you into see the consultant at the drop of a hat whenever you need it and they will be your best support outside of your family

Most people with MS live a full life span with minor difficulties towards the end - that might require maybe a stick or whatever. Some have tougher lives with it, but the vast majority don't.Pick a DMT and anything else you feel that works for you and stick with it. Stay away from the real snake oil - there are a lot of unscrupulous fks out there

Good luck, stay positive and be selfish about your energy levels. .

[adamsky]

My wife has just been told she has ppms, is it normal not to get another oppointment for 2 months? we are really worried and have no one to ask about it? we've only been taking in once, told she has it and given a few books and told see you at your next appointment. She's really struggling already with walking any distance and tired a lot. We don't know what benefits we can get either? just feel I could ask a million questions but no one to ask.

[stuartmmcfc]

Have you been assigned a MS nurse? If she hasn't then phone up the hospital where she was diagnosed and ask to speak to one. They should be able to help.
There will probably be a local branch of the MS Society you should contact.
It's a shock and there's a steep learning curve but try not to be scared and make sure you both stay positive.
I can't really offer anything else, unfortunately it's down to you both to push for help and answers.
Stuart
Spms