diagnosed with MS
Discussion
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
Good luck OP. Here's what my mate with MS is currently doing.
https://www.justgiving.com/thebeaconbike
Riding a pushbike around the UK coast visiting all the lighthouses en route to raise money for shift.MS
Top bloke is Ed.
https://www.justgiving.com/thebeaconbike
Riding a pushbike around the UK coast visiting all the lighthouses en route to raise money for shift.MS
Top bloke is Ed.
Serrapeptase? Good for getting rid of mucus and dissolving proteins, like myelin...
The theory goes that it dissolves the scar tissues around the lesions, however, MS is a result of the myelin ( protein) sheath around the nerves breaking down and broadly causing short circuiting. Nothing ( yet) can rebuild myelin, so removing even scarred myelin with a protein dissolving enzyme to leave the nerves further exposed is almost certainly not a good idea.
Everybody knows somebody who knows somebody who has been fixed by taking (insert improbable substance here). Beware of miracle cures.
The best thing to do from received wisdom is to get on one of the currently proven disease modifying therapies as soon as possible I.e. The interferons or copaxone. There is ever increasing evidence that the sooner you get on them ( like even pre full diagnosis) then the generally better you stay for longer - allowing for the fact that everyone's MS runs its own course. Both types of DMT have roughly the same efficacy but the interferons can build up antibody effects over time and give some people flu type symptoms. Copaxone appears to be far more neutral with the main issues being that you should rotate the injection sites so you don't get any reactions in the same place.
My other half was diagnosed with RRMS some 14 years ago now - she injects Copaxone directly every day and takes 5 x the RDa of Vitamin D. She has various deficits, including simialr style pain in her back and various weak muscles which she counters with Pilates exercises and going to the gym. Effectively she has built other muscles up to cope and she is convinced that the pain has reduced as a result. A positive frame of mind is also very importantly with MS - you are living with it, not dying from it - so don't let it win.
My other half is very stoic and determined - she had never knowingly run a step in her life (45years old now) yet has taken it up recently ( and did the London 10 km run the other day) as she firmly believes in the endorphin effects as well as strengthening her body to cope with any imbalances caused and she swears that's she has less pain and strange effects than previously as a result as well as a far more positive outlook on life in general.
The theory goes that it dissolves the scar tissues around the lesions, however, MS is a result of the myelin ( protein) sheath around the nerves breaking down and broadly causing short circuiting. Nothing ( yet) can rebuild myelin, so removing even scarred myelin with a protein dissolving enzyme to leave the nerves further exposed is almost certainly not a good idea.
Everybody knows somebody who knows somebody who has been fixed by taking (insert improbable substance here). Beware of miracle cures.
The best thing to do from received wisdom is to get on one of the currently proven disease modifying therapies as soon as possible I.e. The interferons or copaxone. There is ever increasing evidence that the sooner you get on them ( like even pre full diagnosis) then the generally better you stay for longer - allowing for the fact that everyone's MS runs its own course. Both types of DMT have roughly the same efficacy but the interferons can build up antibody effects over time and give some people flu type symptoms. Copaxone appears to be far more neutral with the main issues being that you should rotate the injection sites so you don't get any reactions in the same place.
My other half was diagnosed with RRMS some 14 years ago now - she injects Copaxone directly every day and takes 5 x the RDa of Vitamin D. She has various deficits, including simialr style pain in her back and various weak muscles which she counters with Pilates exercises and going to the gym. Effectively she has built other muscles up to cope and she is convinced that the pain has reduced as a result. A positive frame of mind is also very importantly with MS - you are living with it, not dying from it - so don't let it win.
My other half is very stoic and determined - she had never knowingly run a step in her life (45years old now) yet has taken it up recently ( and did the London 10 km run the other day) as she firmly believes in the endorphin effects as well as strengthening her body to cope with any imbalances caused and she swears that's she has less pain and strange effects than previously as a result as well as a far more positive outlook on life in general.
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.
qube_TA said:
Sent Ed some money, I'd have to take too much time off work to do something like that, but TBH it would kick the crap out of me anyway.
Cheers fella. Didn't expect that, was just for inspiration really. Ed didn't train hardly at all for his trip, just upped and left. By no means is he superfit, just your average bloke. And a top one at that. Thread bump. I'm wondering if my OH has MS. She gets what she calls hot pins and needles in hands and has very little strength in her hands which she thought was carpal tunnel. She gets incredibly tired (she does lead an active life) and also gets bad headaches, back pain, and needs to take a lot of wees. She has also had difficulty concentrating which she put down to the after effects of Covid. She's currently on medication for lupus but after looking at the symptoms for MS I'm worried that she's ticking a lot of those boxes.
Just wondering how those who posted on here eight years ago are getting on today and if they can recommend anything to improve her life a bit. Apart from me moving out obviously.
Just wondering how those who posted on here eight years ago are getting on today and if they can recommend anything to improve her life a bit. Apart from me moving out obviously.
If I’m honest it could be MS but it could be a lot of other things, many not that life changing- I once had a girlfriend who had many of those symptoms and she had lymes disease. Another guy I knew had ME. I’ve had MS for 20 years and not had many of those symptoms! It’s very varied?!
The best advice I can give is to eat healthy, watch her weight and, when she’s up to it, do exercise.
That advice is good for everyone to be honest!
The best advice I can give is to eat healthy, watch her weight and, when she’s up to it, do exercise.
That advice is good for everyone to be honest!
Edited by stuartmmcfc on Sunday 16th April 10:55
stuartmmcfc said:
If I’m honest it could be MS but it could be a lot of other things, many not that life changing.
The best advice I can give is to eat healthy, watch her weight and, when she’s up to it, do exercise.
That advice is good for everyone to be honest!
Great post Stuart.The best advice I can give is to eat healthy, watch her weight and, when she’s up to it, do exercise.
That advice is good for everyone to be honest!
Your positive attitude is a breath of fresh air, not easy when you have medical issues,
Wacky Racer said:
stuartmmcfc said:
Wacky Racer said:
Great post Stuart.
Your positive attitude is a breath of fresh air, not easy when you have medical issues,
Easy when you support City Your positive attitude is a breath of fresh air, not easy when you have medical issues,
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