Anyone here got MS?
Discussion
Yes, about 17 years with a MRI scan and effects me a lot.
HOWEVER, just in case it's you or a loved one who's been diagnosed, everyone is different. I know a lot of people of various ages and their symptoms vary from very mild to severe with no real distinction of how long they've had it.
Ask any questions though
HOWEVER, just in case it's you or a loved one who's been diagnosed, everyone is different. I know a lot of people of various ages and their symptoms vary from very mild to severe with no real distinction of how long they've had it.
Ask any questions though
I kicked off with MS ten years ago. New wife - to-be-ex and I had gone to marry in Gretna. Two days after the wedding, I was trying to change a brake light bulb in our camper van. I found myself wondering who'd left the kettle on. I was seeing steam that wasn't there!
It turned out to be a function of optic neuritis...inflammation of my left optic nerve, which the doc called 'a harbinger of MS.
Scans showed seven lesions (scars) in my brain, one in the left frontal lobe (behaviour bit), some in the corpus callosum ( join between two halves of brain). Later, I had a relapse...another scan showed new scars in my visual cortex, which explained why I got diplopia (double vision) and had to wear a prism on my specs for 3 months.
I had to self - inject a drug (Google Avonex ) once a week for some years. I've had relapses roughly once a year...always affecting my left eye. The drug gave me flu every week so I was taken off it so we can monitor what happens.
In some ways I've been pretty lucky. My bad ( left) eye still provides depth perception, even though it can no longer resolve detail well and has only about 2/12 colour vision.
My MS is the relapsing - remitting kind. No grantees but folk who get sensory MS as I did, tend not to get 'motor MS', which can affect movement/strength.
Primary Progressive MS is the type where sufferers are affected from day one and deteriorate steadily.
R-R can turn into Secondary Progressive, which starts a downhill trend.
There are no cures but there is lots if help. Stem cell therapy looks potentially promising.
Above all, there's a lot of info available...it really is a knowledge is power thing.
It turned out to be a function of optic neuritis...inflammation of my left optic nerve, which the doc called 'a harbinger of MS.
Scans showed seven lesions (scars) in my brain, one in the left frontal lobe (behaviour bit), some in the corpus callosum ( join between two halves of brain). Later, I had a relapse...another scan showed new scars in my visual cortex, which explained why I got diplopia (double vision) and had to wear a prism on my specs for 3 months.
I had to self - inject a drug (Google Avonex ) once a week for some years. I've had relapses roughly once a year...always affecting my left eye. The drug gave me flu every week so I was taken off it so we can monitor what happens.
In some ways I've been pretty lucky. My bad ( left) eye still provides depth perception, even though it can no longer resolve detail well and has only about 2/12 colour vision.
My MS is the relapsing - remitting kind. No grantees but folk who get sensory MS as I did, tend not to get 'motor MS', which can affect movement/strength.
Primary Progressive MS is the type where sufferers are affected from day one and deteriorate steadily.
R-R can turn into Secondary Progressive, which starts a downhill trend.
There are no cures but there is lots if help. Stem cell therapy looks potentially promising.
Above all, there's a lot of info available...it really is a knowledge is power thing.
My other half has it. RRMS diagnosed 14 years ago following a few clumsy falls, numbness I left arm and a dose of optic neuritis similar to as described above.
The initial chat with neurologists, after other things like a blood clot in the arm or some other eye issues were ruled out, was interesting as after scans he said " I'm not formally saying you have MS right now as you've only got 6 or 7 ticks in a set of boxes that requires 9 or 10 for formal diagnosis, but if you were to ask me whether I think it is or will be MS then I would probably answer in the affirmative ".. We didn't really get that he was saying get yourself sorted - maybe in terms of if you're going for a new job or getting insurance then now might be a better time than later on sort of thing, but, anyway, cutting a long story short there were a couple of more serious motor related relapses later on that brought the formal diagnosis. Since then it has been relatively mild. She went on Copaxone ( a daily injection) early on -unlike Avonex it's not an interferon so you don't get the flu like symptoms or develop antibodies in the same way and so far so benign. To echo stuartmcfc's commebt though- everyone's course is different and it is very hard to extrapolate form anyone else's experience except in the most general ways.
My other half is a firm believer in extra Vit D and fitness on top of the Copaxone and it works for her.
There is significant and growing evidence that the earlier you get onto the so called disease modifying therapies ( interferons or copaxone at the early RRMS stages ) the slower the cumulative deficit over time. There is also some evidence that Vit D is connected in that it is a disease of low sunlight countries far from the equator and people have low levels of Vit D in their blood when they are undergoing relapses. She takes 5 X the daily Uk recommended limit ( up to 10x has been demonstrated to be safe) and has remained in good shape - we've just come back from a week's skiing and she went out an ran a 10k road race two days later. She has some weakness in some areas but the extra fitness helps to compensate. How much is psychosomatic is another question - I think a significantly amount is; she is very stoic and just hasn't given in to it from day one.
Having said all the above, beware of snake oil vendors and I would repeat that everyone's course is different. Again happy to answer questions or share experience off line if you like.
The initial chat with neurologists, after other things like a blood clot in the arm or some other eye issues were ruled out, was interesting as after scans he said " I'm not formally saying you have MS right now as you've only got 6 or 7 ticks in a set of boxes that requires 9 or 10 for formal diagnosis, but if you were to ask me whether I think it is or will be MS then I would probably answer in the affirmative ".. We didn't really get that he was saying get yourself sorted - maybe in terms of if you're going for a new job or getting insurance then now might be a better time than later on sort of thing, but, anyway, cutting a long story short there were a couple of more serious motor related relapses later on that brought the formal diagnosis. Since then it has been relatively mild. She went on Copaxone ( a daily injection) early on -unlike Avonex it's not an interferon so you don't get the flu like symptoms or develop antibodies in the same way and so far so benign. To echo stuartmcfc's commebt though- everyone's course is different and it is very hard to extrapolate form anyone else's experience except in the most general ways.
My other half is a firm believer in extra Vit D and fitness on top of the Copaxone and it works for her.
There is significant and growing evidence that the earlier you get onto the so called disease modifying therapies ( interferons or copaxone at the early RRMS stages ) the slower the cumulative deficit over time. There is also some evidence that Vit D is connected in that it is a disease of low sunlight countries far from the equator and people have low levels of Vit D in their blood when they are undergoing relapses. She takes 5 X the daily Uk recommended limit ( up to 10x has been demonstrated to be safe) and has remained in good shape - we've just come back from a week's skiing and she went out an ran a 10k road race two days later. She has some weakness in some areas but the extra fitness helps to compensate. How much is psychosomatic is another question - I think a significantly amount is; she is very stoic and just hasn't given in to it from day one.
Having said all the above, beware of snake oil vendors and I would repeat that everyone's course is different. Again happy to answer questions or share experience off line if you like.
Couple of good posts after mine. The reason why I made the comment that everyone is different is to reassure a newly diagnosed person that just because I'm in a wheelchair doesn't mean that "you" will be, so there's no need to be scared.
Another good point is the value of exercise but it's important to do it while you're able. Things can creep up on you if you're not careful
I'm not convinced by the vitamin D theory, but there's no reason not to try it. That's the problem with MS, there's no studies that show that any "treatment" really alters the progression of your disease.
I was on Beta Interferon from early on (self funding, ouch!) but I recently read a report that said this actually has no affect on the level of disability, just makes the journey there smoother.
I had CCSVI a few years ago and despite an initial improvement the only long term legacy is that I'm several thousand £ worse off!
On the cheaper end of the scale I go for hyperbaric oxygen treatment weekly which has some effect on my fatigue. Not much but some. I also take 3000mg of biotin, which is the latest idea for secondary progressive, with some benefits with my toilet visits
Loads of benefits though, half price tickets, "free" car and watching daytime tv to name a few!
Another good point is the value of exercise but it's important to do it while you're able. Things can creep up on you if you're not careful
I'm not convinced by the vitamin D theory, but there's no reason not to try it. That's the problem with MS, there's no studies that show that any "treatment" really alters the progression of your disease.
I was on Beta Interferon from early on (self funding, ouch!) but I recently read a report that said this actually has no affect on the level of disability, just makes the journey there smoother.
I had CCSVI a few years ago and despite an initial improvement the only long term legacy is that I'm several thousand £ worse off!
On the cheaper end of the scale I go for hyperbaric oxygen treatment weekly which has some effect on my fatigue. Not much but some. I also take 3000mg of biotin, which is the latest idea for secondary progressive, with some benefits with my toilet visits
Loads of benefits though, half price tickets, "free" car and watching daytime tv to name a few!
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