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.
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.
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.
ks to all of that! Will just crack on as before even if it means I'm going to feel like crap doing it.
Update from the OP it's been a bit rubbish the constant pain is no fun, it ranges from rubbish to really kicking the crap out of me. If it's a dry day then it's generally OK but if it's damp and cold then wow. I got caught in a storm the other week and was stuck in wet clothes for a few hours, felt really poorly, before I wouldn't have cared.
I have an MS nurse, she's friendly but TBH i'm not sure what she's for. She calls and I give her an update, she then tells me how brave I am and that she's thinking about me (which is nice) then calls again in a few months.
The MS clinic have said that the progression of MS is slow so fortunately I have a mild case of it, however the damage that it caused last May when all this started is likely to be permanent as it's burned a hole in my back and eaten my nerves.
They gave me some stick on lidocaine patches which just hurt like hell after about 3 hours of wearing them, made things far worse, they also gave me some capsaicin cream which also just made it worse, they tried some stuff that made it cold which also had the same effect.
What they've said is that I've a hole in my back that my brain is registering as pain, any cream or patch they put on my skin just aggravates the remaining nerves that are still good and duff ones are as before. Waste of time really.
I'm on 1400mg of Gabapentin 3 times per day, these are great, they don't really turn the pain down but I don't feel as beaten up as much as before so can just get on with life. I get migraine headaches a bit more often than before and it's harder to have a number 2 but they've been the only thing so far that has been positive.
I've been referred to a pain clinic but have been waiting 7 months for an appointment, they were on about sticking electrodes into my spine but looking into that it seems a bit life changing. Ideally I'd have some kind of stem-cell treatment to fix the hole but that's not available.
If it's a dry day then it's generally OK but if it's damp and cold then wow, impressive. I got caught in a storm the other week and was stuck in wet clothes for a few hours, felt really poorly, before I wouldn't have cared. Bored of it all, found out I might be able to draw my pension out at a higher rate as I'm not expected to live as long now, bit of a result
I have an MS nurse, she's friendly but TBH i'm not sure what she's for. She calls and I give her an update, she then tells me how brave I am and that she's thinking about me (which is nice) then calls again in a few months.
The MS clinic have said that the progression of MS is slow so fortunately I have a mild case of it, however the damage that it caused last May when all this started is likely to be permanent as it's burned a hole in my back and eaten my nerves.
They gave me some stick on lidocaine patches which just hurt like hell after about 3 hours of wearing them, made things far worse, they also gave me some capsaicin cream which also just made it worse, they tried some stuff that made it cold which also had the same effect.
What they've said is that I've a hole in my back that my brain is registering as pain, any cream or patch they put on my skin just aggravates the remaining nerves that are still good and duff ones are as before. Waste of time really.
I'm on 1400mg of Gabapentin 3 times per day, these are great, they don't really turn the pain down but I don't feel as beaten up as much as before so can just get on with life. I get migraine headaches a bit more often than before and it's harder to have a number 2 but they've been the only thing so far that has been positive.
I've been referred to a pain clinic but have been waiting 7 months for an appointment, they were on about sticking electrodes into my spine but looking into that it seems a bit life changing. Ideally I'd have some kind of stem-cell treatment to fix the hole but that's not available.
If it's a dry day then it's generally OK but if it's damp and cold then wow, impressive. I got caught in a storm the other week and was stuck in wet clothes for a few hours, felt really poorly, before I wouldn't have cared. Bored of it all, found out I might be able to draw my pension out at a higher rate as I'm not expected to live as long now, bit of a result
I apparently don't qualify for DMT as my 'relapses' have been 2.5 years apart, the first was misdiagnosed as CT in my left arm but it got better (I didn't know at the time but the fact it got better proved it wasn't CT and more likely MS). The 2nd didn't get better and is now suspected as being permanent damage.
If I get another one in 12 months time then I can qualify for the treatment, but going on those opens all kinds of other potential cans of worms so I'm hoping things just stay as they are for the foreseeable future.
If I get another one in 12 months time then I can qualify for the treatment, but going on those opens all kinds of other potential cans of worms so I'm hoping things just stay as they are for the foreseeable future.
Gassing Station | Health Matters | Top of Page | What's New | My Stuff