diagnosed with MS
Discussion
Never expected to start a thread on here but I thought it could be useful as I'm unsure what to expect.
At the start of may, during a long meeting at work an odd 'wave-like' sensation came over me and my torso and limbs went slightly numb feeling and I had pins n needles all over, felt a bit like when a leg 'goes to sleep' but the sensation was all over. It didn't hurt but it was obvious something was amiss.
I carried on with the meeting, when it was done and I got up to grab a coffee it was apparent that I had a pain in my ribs on my right-hand side and on my back, it crossed my mind that I might be coming down with shingles. Breathing was OK so didn't suspect a lung.
Since then the discomfort and pain have gotten steadily worse, there's an area on my ribs that is unbelievably sensitive with a random stabbing pain that can bring me to my knees, all my limbs ache and I've lost weight and strength. Basic exercise just feels like torture, it's a really odd sort of pain, massive fatigue and nerve pain all over, electrical sensations in my hands and feet.
I went to the docs who suggested a trapped nerve, gave me codeine and amitripaline (sp) which didn't do anything useful, eventually I had an MRI which showed nothing unusual with my spine or tissue, no trapped nerve, slipped discs, alignment issues or similar. It carried on getting steadily more rubbish, some days are better than others but it's wearing me down.
In addition I've had an increase in epic migraines on my left side of my head and bouts of nausea/sickness. I've also noticed that my balance is a bit off, not the easiest thing to walk in a straight line.
After pestering the GP for a referral I eventually saw a neurologist who seemed to know what was going on, he arranged a contrast-MRI which showed spots of inflammation all up my spine and predominately in my head at the top of the spine.
This apparently confirms MS, he was quite pleased with himself that his hunch was proven correct.
I've now got an LP to look forward to an a course of 'high intensity' steroids but that's about all I know, other than feeling, impossibly exhausted, like I've got whiplash and it's a challenge putting on ones socks, this information hasn't really changed anything, other than it's nice to know what's causing it.
Before all of this I was reasonably fit and enjoyed life, I'm 40.
My wife is quite upset, my Mum won't stop crying, their consensus seems to be that I'm screwed.
However if I'm honest I've no idea, I know it used to be bad news but I thought that these days it's something that's manageable.
Anyone on here that could offer some very welcome advice as to what to expect or what I could be doing to improve things, googling just suggests I'm screwed but google says that if you ask about a cold!
Anyway I don't really know what to do so if nothing else it's nice to have somewhere I could discuss this.
Thanks in advance.
At the start of may, during a long meeting at work an odd 'wave-like' sensation came over me and my torso and limbs went slightly numb feeling and I had pins n needles all over, felt a bit like when a leg 'goes to sleep' but the sensation was all over. It didn't hurt but it was obvious something was amiss.
I carried on with the meeting, when it was done and I got up to grab a coffee it was apparent that I had a pain in my ribs on my right-hand side and on my back, it crossed my mind that I might be coming down with shingles. Breathing was OK so didn't suspect a lung.
Since then the discomfort and pain have gotten steadily worse, there's an area on my ribs that is unbelievably sensitive with a random stabbing pain that can bring me to my knees, all my limbs ache and I've lost weight and strength. Basic exercise just feels like torture, it's a really odd sort of pain, massive fatigue and nerve pain all over, electrical sensations in my hands and feet.
I went to the docs who suggested a trapped nerve, gave me codeine and amitripaline (sp) which didn't do anything useful, eventually I had an MRI which showed nothing unusual with my spine or tissue, no trapped nerve, slipped discs, alignment issues or similar. It carried on getting steadily more rubbish, some days are better than others but it's wearing me down.
In addition I've had an increase in epic migraines on my left side of my head and bouts of nausea/sickness. I've also noticed that my balance is a bit off, not the easiest thing to walk in a straight line.
After pestering the GP for a referral I eventually saw a neurologist who seemed to know what was going on, he arranged a contrast-MRI which showed spots of inflammation all up my spine and predominately in my head at the top of the spine.
This apparently confirms MS, he was quite pleased with himself that his hunch was proven correct.
I've now got an LP to look forward to an a course of 'high intensity' steroids but that's about all I know, other than feeling, impossibly exhausted, like I've got whiplash and it's a challenge putting on ones socks, this information hasn't really changed anything, other than it's nice to know what's causing it.
Before all of this I was reasonably fit and enjoyed life, I'm 40.
My wife is quite upset, my Mum won't stop crying, their consensus seems to be that I'm screwed.
However if I'm honest I've no idea, I know it used to be bad news but I thought that these days it's something that's manageable.
Anyone on here that could offer some very welcome advice as to what to expect or what I could be doing to improve things, googling just suggests I'm screwed but google says that if you ask about a cold!
Anyway I don't really know what to do so if nothing else it's nice to have somewhere I could discuss this.
Thanks in advance.
Hi,
I've had MS for around 15 years now and tbh it really depends what you're like as a person.
No one knows how it'll progress. Some people fear the worst and fall to peices because the glass is half empty and they're "happy" to be proved right
Others see the glass being half full and it doesn't matter what happens, they deal with what ever happens.
I know plenty in both camps and it's funny how MS isn't such a big deal to the ones in the latter camp.
Some people hardly change, others end up unable to do anything much.
It helps a lot to be in a strong supportive relationship, and if you're finacially secure its a weight of your shoulders. If you're not, then I'm sure you'll be ok
Incase you're wondering, I'm almost in a chair but since I've had MS ive met and married a wonderful woman, had 2 kids, travelled the world, given up having to go to work, looked after the kids and seen them grow up, get into the football cheap, been to Wembely twice, get a new car every 3 years- the list goes on and on
I'm NOT saying things won't be tough emotionally at times, because they can be. But keep positive - it really does help.
My one tip would be to keep reasonably fit. If things start to deteriorate then you'll be able to cope much better.
I've had MS for around 15 years now and tbh it really depends what you're like as a person.
No one knows how it'll progress. Some people fear the worst and fall to peices because the glass is half empty and they're "happy" to be proved right
Others see the glass being half full and it doesn't matter what happens, they deal with what ever happens.
I know plenty in both camps and it's funny how MS isn't such a big deal to the ones in the latter camp.
Some people hardly change, others end up unable to do anything much.
It helps a lot to be in a strong supportive relationship, and if you're finacially secure its a weight of your shoulders. If you're not, then I'm sure you'll be ok
Incase you're wondering, I'm almost in a chair but since I've had MS ive met and married a wonderful woman, had 2 kids, travelled the world, given up having to go to work, looked after the kids and seen them grow up, get into the football cheap, been to Wembely twice, get a new car every 3 years- the list goes on and on
I'm NOT saying things won't be tough emotionally at times, because they can be. But keep positive - it really does help.
My one tip would be to keep reasonably fit. If things start to deteriorate then you'll be able to cope much better.
Edited by stuartmmcfc on Thursday 6th November 19:26
My wife was diagnosed in 1991 when she was 36.
Her viewpoint was not dissimilar to the one you hold, however that turned out to be not the case, thankfully.
My wife's diagnosis is one of relapsing/remitting MS,and over the years she has escaped from most of the really bad consequences of having MS.
Fatigue is a very common symptom in MS, so it's no surprise to hear you are feeling as you do.
There are many drugs/treatments available for MS now, so hopefully your consultant will be able to offer you something that will help.
Your life is not screwed, and an optimistic outlook on life despite your predicament will go a long way in keeping you healthy.
Good luck
Her viewpoint was not dissimilar to the one you hold, however that turned out to be not the case, thankfully.
My wife's diagnosis is one of relapsing/remitting MS,and over the years she has escaped from most of the really bad consequences of having MS.
Fatigue is a very common symptom in MS, so it's no surprise to hear you are feeling as you do.
There are many drugs/treatments available for MS now, so hopefully your consultant will be able to offer you something that will help.
Your life is not screwed, and an optimistic outlook on life despite your predicament will go a long way in keeping you healthy.
Good luck
I have a very good friend who has MS, diagnosed probly 5 years ago. He's mid/late 40s, has 3 young children and is the most wonderful, cheerful fellow who, if you weren't aware of his illness, you would think was 100% healthy.
As far as I can see, the only change in his life is he no longer plays cricket. I suspect there is more to it than that, but you wouldn't know it by his demeanour.
Good luck OP, as posted above, stay positive and, as my mate says, keep buggering on.
As far as I can see, the only change in his life is he no longer plays cricket. I suspect there is more to it than that, but you wouldn't know it by his demeanour.
Good luck OP, as posted above, stay positive and, as my mate says, keep buggering on.
Be very careful about paying for any expensive treatment.
Very few have shown any serious success in clinical trials and what works for one may not work for many others.
I've spent a considerable 5 figure sum over the years on " ground breaking" treatments with no long term benefits.
That's not to say you shouldn't try them or that they wouldn't work for you but your life savings may be better spent else where.
Istr that some insurance companies no longer count MS as a critical illness due to the low impact the illness has on many.
Great
Very few have shown any serious success in clinical trials and what works for one may not work for many others.
I've spent a considerable 5 figure sum over the years on " ground breaking" treatments with no long term benefits.
That's not to say you shouldn't try them or that they wouldn't work for you but your life savings may be better spent else where.
Istr that some insurance companies no longer count MS as a critical illness due to the low impact the illness has on many.
Great
I had bupa cover but they won't cover me for a 'chronic illness' so following the diagnosis I'm back to the NHS.
I can't afford to drop a ton of cash on this, still have a mortgage to pay and family to support.
My worry is less about my health and more with being able to bring money in each month if this goes south.
I can't afford to drop a ton of cash on this, still have a mortgage to pay and family to support.
My worry is less about my health and more with being able to bring money in each month if this goes south.
A lot depends on your general attitude to life, and a lot on the type of MS you have. An aunt of my wife has relapsing/remitting MS and hasn't had an episode for a while. However my mother has the degenerative non remitting type and is a very pessimistic person and it has had a huge impact on her life (and everybody around her) as she is very negative and has to a certain extent given up on life.
I have a good friend who was diagnosed with MS in her mid thirties. She is 67 now. Yes, there have been periods where it has flared up, occasional tremors, difficulty walking but by and large she had led a normal life and had a very successful career. As others have said it is somewhat unpredictable.
My cousin was diagnosed with it in her early 20s and she's in her mid 50s now, no (apparent) problems at all, looking at her you wouldn't know she has it. She says she has slight problems writing thesedays, but thats about it, still drives, walks a few miles each day etc, so in my limited experience its very variable, key would be to keep healthy and positive I guess. Have the mrs have a chat with your mum too, tell her that its not doing you much good to be howling like you're on death row all the time, should cheer her up and help you stay positive....
My mother was diagnosed in her twenties. Shes fifty nine now. Other than fatiguing more quickly shes in good health. She had a period of needing a walking stick during her thirties so Im told but now thinks nothing of walking her dog five miles a day across fields in York!
Chin up! The stuff you hear about on the news is worst case, because it sells. I sometimes wish there was a good or happy newspaper actually printed instead of just online!
Its probably been active in your system before you were diagnosed. How did you cope with it then? Like a boss thats how. I believe its all about your mindset!
Chin up! The stuff you hear about on the news is worst case, because it sells. I sometimes wish there was a good or happy newspaper actually printed instead of just online!
Its probably been active in your system before you were diagnosed. How did you cope with it then? Like a boss thats how. I believe its all about your mindset!
Edited by Alex106 on Friday 7th November 13:00
My better half was diagnosed about 9 years ago, after trying for years to get someone to look at all her symptoms together and give her an MRI. She's incredibly independent and strong willed, severe fatigue and reduced mobility doesn't get her down, but she's finally accepted that riding in her wheelchair is much better for her than struggling with a crutch.
Her main problems are cognitive disfunction, losing the thread of a conversation or "running out of words" mid stream. She, and everyone around her, have learned to just laugh it off, and wait for her to 'retune' her brain. Other problems are not discussed in polite company, but are easily worked around, she just navigates by the location of the nearest public loo.
The worst, though, is reduced immunity to colds and bugs and has had multiple bouts of pneumonia.
Her symptoms haven't worsened over the past five years, but that's possibly from moving to a hotter, drier climate.
Her main problems are cognitive disfunction, losing the thread of a conversation or "running out of words" mid stream. She, and everyone around her, have learned to just laugh it off, and wait for her to 'retune' her brain. Other problems are not discussed in polite company, but are easily worked around, she just navigates by the location of the nearest public loo.
The worst, though, is reduced immunity to colds and bugs and has had multiple bouts of pneumonia.
Her symptoms haven't worsened over the past five years, but that's possibly from moving to a hotter, drier climate.
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 s
t 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.
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 s
t 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 - f
k the naysayers, they've no idea what they're on about. don'tbesilly said:
My wife was diagnosed in 1991 when she was 36.
Her viewpoint was not dissimilar to the one you hold, however that turned out to be not the case, thankfully.
My wife's diagnosis is one of relapsing/remitting MS,and over the years she has escaped from most of the really bad consequences of having MS.
Fatigue is a very common symptom in MS, so it's no surprise to hear you are feeling as you do.
There are many drugs/treatments available for MS now, so hopefully your consultant will be able to offer you something that will help.
Your life is not screwed, and an optimistic outlook on life despite your predicament will go a long way in keeping you healthy.
Good luck
Very much the same as my wife.Her viewpoint was not dissimilar to the one you hold, however that turned out to be not the case, thankfully.
My wife's diagnosis is one of relapsing/remitting MS,and over the years she has escaped from most of the really bad consequences of having MS.
Fatigue is a very common symptom in MS, so it's no surprise to hear you are feeling as you do.
There are many drugs/treatments available for MS now, so hopefully your consultant will be able to offer you something that will help.
Your life is not screwed, and an optimistic outlook on life despite your predicament will go a long way in keeping you healthy.
Good luck
She was similarly diagnosed in 2001 at the age of 37. For her the main symptoms have been fatigue with some very slight sensory and cognitive impairment. Having said that she's still smarter than me! The fatigue made her give up her job a GP very early on but to be honest she could probably have carried on right up until today in a less onerous job.
Really , and fingers crossed, she hasn't had a major problems.
At first, it was a pretty devastating feeling for everyone. It was the uncertainty at the beginning which was worst.
Your life isn't screwed.
Stay well and good luck!
As others have said there appears to be Somatic component to MS progression , that is not to say that the most positive and open to ideas person can;t be struck with fast progressing disease process.
the first-hand and Directly second-hand ( partner of , child of someone with MS ) accounts on here cover the range
the Somatic component of the progression of chronic disease is a bit of an 'elephant in the room' topic, especially where you have people who confuse sympathy and empathy ... fortunately the MS community is rather more sensible about it than certain other disease-affected communites and you won;t get death threats for suggesting there is a somatic component ...
the first-hand and Directly second-hand ( partner of , child of someone with MS ) accounts on here cover the range
the Somatic component of the progression of chronic disease is a bit of an 'elephant in the room' topic, especially where you have people who confuse sympathy and empathy ... fortunately the MS community is rather more sensible about it than certain other disease-affected communites and you won;t get death threats for suggesting there is a somatic component ...
Was diagnosed 4 & 1/2 years ago after 2 years of tests, more tests and MRIs(all of which have been clear!) Was confirmed with a lumbar puncture and catalogue of symptoms. Probably worst problems are weapons grade fatigue & neuropathic pain(feels like sunburn being scratched when is at is worse.) fatigue means a 4 day week & just trying to relax and not over do things.
Take enough drugs that i rattle like a baby's toy.
I have been lucky in that I can get sativex for my legs. Tastes awful but it works, downside is the munchies.
I take each day as it comes now. Try not to plan too far ahead.
Take enough drugs that i rattle like a baby's toy.
I have been lucky in that I can get sativex for my legs. Tastes awful but it works, downside is the munchies.
I take each day as it comes now. Try not to plan too far ahead.
I don't, kinda wish I did now, I owe £138k on the mortgage, need to ensure I can continue to pay that off.
I guess the plan to pay it off and buy that Z06 are unlikely now
I've not yet been officially diagnosed with it, the LP should confirm. The doc seemed very confident though following the last MRI and tests.
As others have said it's the unknowing which is the most frustrating, the fatigue side is impressive, just feels like I have whiplash all the time. Some days are better than others, it's quite hard to describe how it feels.
I guess the plan to pay it off and buy that Z06 are unlikely now
I've not yet been officially diagnosed with it, the LP should confirm. The doc seemed very confident though following the last MRI and tests.
As others have said it's the unknowing which is the most frustrating, the fatigue side is impressive, just feels like I have whiplash all the time. Some days are better than others, it's quite hard to describe how it feels.
Gassing Station | Health Matters | Top of Page | What's New | My Stuff