View Full Version : MS FAQ (please anyone with MS knowledge contribute)
Since so many people with HA have gone through MS fear (myself included, have been terrified the last 3 weeks), I though it would be good to make a FAQ with rational facts about MS. I'll start with what I know and will add some questions, but please everyone with some knowledge, contribute to the thread. I'll try to keep the FAQ organized.
MS is a rare disease. In the US and North Europe about 1 in 600 is affected. Near the ecuador it's 1 in 50,000.
In most cases people (about 90%) with MS are diagnosed after extreme fatigue. In about 20% of cases they have eye issues. About 50% have pain somewhere.
Usually people with MS will fall down often or drop things often, but they don't fall down because of a weak leg...the fall down because of lack of coordination (leg doesn't respond)
Tingling is not associated with MS (please someone confirm?)
Symptoms present in one specific part...not over the whole body
Symptoms get gradually worse and don't change from the morning to the evening
If under 40 years of age, the most common type (>90%) is Relapsing-Remitting. It means that although there will be relapses, most of the time you can work normally.
About 35% of Relapsing-Remitting do not get progressive, which means it will go in cycles and not get worse. The remaining 65% it needs about 15 years to get progressive, so it's likely that for at least 15-20 years you can have a fairly normal life.
The effect on life expectancy is small (5-10 years)
There are new meds that help to manage MS although it depends.
There are reports that through diet and lifestyle changes, people have cured or at least managed MS (this is a bit contradictory, but in some cases it seems it's true)
Hi matrix. I really do think you need to speak to your dr, this worry is going to make you ill. As for the ms knowledge I don't know the answers to all of your questions but what I do know is ms is a complicated disease and affects each sufferer differently. But many people do live a normal life for many years and its never ms that kills some one xx
cassy thanx for your reply....I'm actually feeling positive today. The reason I'm making this thread is to have a place with some rational facts to help all those people scared of MS.
Glad to hear you are feeling positive :-). The only person who can really give good information and proper facts on ms would be your dr. You could speak to them? They can't force you to have an mri and tbh they probably wouldn't even suggest it because you don't need one but it might put your mind at rest xx
Since my leg is feeling better I'm starting to accept that it was probably just anxiety and maybe some muscle tension that made me worry. If it continues to get better, I think I'll accept it as anxiety and move on :)
Hiya
How about going onto the ms-peoples forum and asking questions to the people that are living with MS? I am sure that it affects people in different ways.
Pleased you feel positive today:)
Trish x
Sarahjosephine
25-06-12, 11:54
Thanks for this post, it definitely makes me feel better :)
Hi, I can understand your fear. I have suffered from what I thought was MS symptoms over the last four months. I had a tingling sensation in my shin for a month. I was feeling dizzy, a buzzing feeling in my body as I was waking up, flashing lights in my vision, tingling fingers, a sunburn sensation, wet sensations in my leg, tightness in my belly, weak arms and legs, twitches and more. I was convinced i had ms for the last 4 months and couldn't think of anything else. It made me think about it all the time. I saw a dr who said it's likely to be anxiety but becauase I'm female, have a cousina nd uncle with it, vitimin D deficiency and strainge sensations that he'd refer me to a neurologist who suggested an MRI. I just got back from his office and he said that I do not have ms. He said the mri was clear and that I was healthy as and could even fly a plane. He said my brain is "beautiful"! I am so relieved and happy and now can actually enjoy my life. I wish I hadn't wasted the last four months thinking about it twenty four seven. I told the dr about googling symptoms and coming across sites that say " I had these symptoms and my dr said i was fine and now i'm suffering from XYZ" To which he replied that he sees 50 people a week with MS and has been doing it for thirty years! I know who I would rather trust and it's certainly not dr google. The reason that so many people get these anxieties is because the symptoms can be very similar if googled. Anxiety symptoms are not made up in our heads, but rather a result of the muscle tention and over breathing that can really cause so many problems! I would strongly recommend to anyone feeling so desperately scared of this disease that it's taking over their life to see a psychologist. Mine is lovely and is really helping me through this horrible thing! She said that googling is often actually an obsession almost like obsessive compulsive disorder, and the way that you deal with that is but not doing what ever the behaviour is as that leads to the mind thinking there is something wrong and the cycle continues! So if you have symptoms, go see a dr. If he says it's all fine deal with the terrible mental illness of anxiety. They know way more than Dr google!!
Good luck everyone i hope you can see sunshine again soon
Hiya
How about going onto the ms-peoples forum and asking questions to the people that are living with MS? I am sure that it affects people in different ways.
Pleased you feel positive today:)
Trish x
I'm kind of afraid to go there and see the full list of symptoms, because I may get them :) My idea was to have this thread with the major guidelines for people scared of MS. For example if 80% of people with MS can manage it for a long time, there's no reason to be so scared of it. Or if 90% of the cases the first symptom is a blind eye, there's no reason to be scared so much by muscle twitching, etc
---------- Post added at 13:43 ---------- Previous post was at 13:41 ----------
Hi, I can understand your fear. I have suffered from what I thought was MS symptoms over the last four months. I had a tingling sensation in my shin for a month. I was feeling dizzy, a buzzing feeling in my body as I was waking up, flashing lights in my vision, tingling fingers, a sunburn sensation, wet sensations in my leg, tightness in my belly, weak arms and legs, twitches and more. I was convinced i had ms for the last 4 months and couldn't think of anything else. It made me think about it all the time. I saw a dr who said it's likely to be anxiety but becauase I'm female, have a cousina nd uncle with it, vitimin D deficiency and strainge sensations that he'd refer me to a neurologist who suggested an MRI. I just got back from his office and he said that I do not have ms. He said the mri was clear and that I was healthy as and could even fly a plane. He said my brain is "beautiful"! I am so relieved and happy and now can actually enjoy my life. I wish I hadn't wasted the last four months thinking about it twenty four seven. I told the dr about googling symptoms and coming across sites that say " I had these symptoms and my dr said i was fine and now i'm suffering from XYZ" To which he replied that he sees 50 people a week with MS and has been doing it for thirty years! I know who I would rather trust and it's certainly not dr google. The reason that so many people get these anxieties is because the symptoms can be very similar if googled. Anxiety symptoms are not made up in our heads, but rather a result of the muscle tention and over breathing that can really cause so many problems! I would strongly recommend to anyone feeling so desperately scared of this disease that it's taking over their life to see a psychologist. Mine is lovely and is really helping me through this horrible thing! She said that googling is often actually an obsession almost like obsessive compulsive disorder, and the way that you deal with that is but not doing what ever the behaviour is as that leads to the mind thinking there is something wrong and the cycle continues! So if you have symptoms, go see a dr. If he says it's all fine deal with the terrible mental illness of anxiety. They know way more than Dr google!!
Good luck everyone i hope you can see sunshine again soon
I know that seeing a doctor is the best, but still think that some guidelines would help people scared of MS. Since you have relatives with it, can you provide some answers to the questions above...or add something you know?
Estellenoire
25-06-12, 14:12
I did a project on MS last year (training to be an OT) so here's some stuff I can remember.
Early Symptoms
As MS can strike anywhere in the central nervous system, early symptoms can be any neurological sign, but can include fatigue, tingling or numbness, temporary problems with vision, trouble keeping balance and incontinence.
The original questions you asked (this part is from experience of working with people with MS, and I might google as well because I'm trying to distract myself from the feeling of impending doom I woke up with this morning).
I've read that weakness in MS is severe...not like it feels weak, but it's so weak that you have trouble getting up from a sited position. please confirm?
This affects different people differently. One patient I worked with did indeed have this trouble but he had lived with MS for nearly 40 years, and it had only been in the last 10 years that he had started to have this difficulty. From what I remember he had had some weakness, which had subsided when he went into remission, but got worse with every "attack". It didn't happen overnight. This particular patient had a very demanding job, which he stayed working in until he was in his 50s.
- Any stats on how many cases of MS end up bad? how many can still work for 10 or more years, how many will have a fairly normal life until getting old, etc
This is a tricky one. MS isn't considered a terminal condition (average life expectancy is between 5-10 years below the national average). How it all pans out depends on the type of MS you have, amongst other things.
The most common type (about 85%) is Relapsing-Remitting. Where you have a relapse (some people call it an "attack"), this can last a couple of months, and then you go into remission, where symptoms fade or get completely better. People with RRMS might have to take time off work during an "attack", but when they go into remission they are usually able to go back to living a normal life. It's likely that a person diagnosed with RRMS in their 20s would still be working 20 years later.
About 65% of people with RRMS go on to develop Secondary Progressive MS, where you have a steady decline in function between attacks. Average time between onset of MS (not diagnoses) and conversion to SPMS is about 15 years.
About 10% of people with MS have Primary Progressive MS, where symptoms gradually get worse from first diagnoses. This is usually diagnosed in people in their 40s or 50s and is generally considered more severe than RRMS.
Hungry now, I'll answer more later after I find the work I did. The answer to a lot of the FAQs is no though. :D
Thanx for your valuable information. However I didn't understand the last phrase (The answer to a lot of the FAQs is no though). Are you referring to:
There are new meds that help to manage MS (anyone with some more knowledge on this?)
There's a report of a new med that seems to cure MS (anyone with some more knowledge on this)
There are reports that through diet and lifestyle changes, people have cured MS (confirmation please?)
Does it means there are no meds?
Yes there are various drugs and other treatments that may help or may not help a person with MS - as others have said, the effects of MS are a very individual thing, and so are responses to treatment.
Research into treatments and potential cures is ongoing, so new things are emerging all the time. There is no medical cure at the moment and I'd love to meet anybody who has cured it through diet to homeopathy or whatever. My husband tried both and it made not a jot of difference.
Tbh, Matrix, I'm not sure this thread is a great idea. Sorry, I sort of understand why you have started it but to my mind it would probably better if you tried to focus on it less.
My children have at a higher risk of developing MS for genetic reasons. My 19-year-old son has a symptom that concerns me. We had a conversation about it one day. His attitude is that, yes, he may well develop MS in the future - he may even have it now - but he's not going to spend the time until that happens worrying about it. One of his favourite phrases is YOLO (you only live once, for the uninitiated). I'm very proud of him.
Please take care, try to forget about this and, if necessary, consider treatment for HA x
Add: Sorry I should have said that while I don't think there are "alternative" cures from MS, I am open-minded about the possibility of such things being of benefit in managing symptoms x
Estellenoire
25-06-12, 15:07
There are meds. And a lot of people have had a lot of success with diet and lifestyle changes, apparently. I don't really know much about this side of it.
I was talking more about the rest. MS is rare, it affects closer to 1 in 1000 people in the UK, I imagine it'll be a similar number for northern Europe. Weirdly it affects people in warmer climates less, no one really knows why this is. Some people think it could be something to do with vitamin D. Apparently moving to a warmer country later in life (after the age of 12 I think I read) won't make you less likely to get it.
I don't think most cases are diagnosed after someone going blind or being paralysed. Generally 9 in 10 people present with extreme fatique, 1 in 5 present with eye problems (pain, trouble focussing, loss of vision), about half present with pain (either neuro or actual).
The falling down and dropping things is true, it is a lack of co-ordination rather than weakness, usually. Think of your nerves as electrical wiring and your limbs as the toaster, the microwave, the kettle and the blender (or whatever, I'm hungry so my brain is obviously in the kitchen). If the sheath over the wiring becomes exposed, your toaster is more likely to suddenly spark up and set fire the the bread, and then if the wiring the controls the kettle becomes exposed too, one day you could be trying to make toast and the kettle goes on. It's the same with the nerves. When the myelin becomes exposed your movements can become quite unpredictable.
Symptoms can be either general or specific, so it could affect the right foot, or the right side of the body. It depends on the nerves involved.
And you're right about symptoms generally not getting worse as the day goes on. Some people do find that heat makes their symptoms worse, again I have no idea why this would be.
Yes there are various drugs and other treatments that may help or may not help a person with MS - as others have said, the effects of MS are a very individual thing, and so are responses to treatment.
Research into treatments and potential cures is ongoing, so new things are emerging all the time. There is no medical cure at the moment and I'd love to meet anybody who has cured it through diet to homeopathy or whatever. My husband tried both and it made not a jot of difference.
Tbh, Matrix, I'm not sure this thread is a great idea. Sorry, I sort of understand why you have started it but to my mind it would probably better if you tried to focus on it less.
My children have at a higher risk of developing MS for genetic reasons. My 19-year-old son has a symptom that concerns me. We had a conversation about it one day. His attitude is that, yes, he may well develop MS in the future - he may even have it now - but he's not going to spend the time until that happens worrying about it. One of his favourite phrases is YOLO (you only live once, for the uninitiated). I'm very proud of him.
Please take care, try to forget about this and, if necessary, consider treatment for HA x
Add: Sorry I should have said that while I don't think there are "alternative" cures from MS, I am open-minded about the possibility of such things being of benefit in managing symptoms x
Jane, I understand your point...and I'm trying to focus less on it (today I'm feeling better). My idea is that something like this may help others. For example the fact that you can work for 10-20 years after getting it is positive. To me now MS doesn't sound as scary as before.
P.S I'm getting medication for HA and hopefully they'll help
---------- Post added at 16:29 ---------- Previous post was at 16:28 ----------
There are meds. And a lot of people have had a lot of success with diet and lifestyle changes, apparently. I don't really know much about this side of it.
I was talking more about the rest. MS is rare, it affects closer to 1 in 1000 people in the UK, I imagine it'll be a similar number for northern Europe. Weirdly it affects people in warmer climates less, no one really knows why this is. Some people think it could be something to do with vitamin D. Apparently moving to a warmer country later in life (after the age of 12 I think I read) won't make you less likely to get it.
I don't think most cases are diagnosed after someone going blind or being paralysed. Generally 9 in 10 people present with extreme fatique, 1 in 5 present with eye problems (pain, trouble focussing, loss of vision), about half present with pain (either neuro or actual).
The falling down and dropping things is true, it is a lack of co-ordination rather than weakness, usually. Think of your nerves as electrical wiring and your limbs as the toaster, the microwave, the kettle and the blender (or whatever, I'm hungry so my brain is obviously in the kitchen). If the sheath over the wiring becomes exposed, your toaster is more likely to suddenly spark up and set fire the the bread, and then if the wiring the controls the kettle becomes exposed too, one day you could be trying to make toast and the kettle goes on. It's the same with the nerves. When the myelin becomes exposed your movements can become quite unpredictable.
Symptoms can be either general or specific, so it could affect the right foot, or the right side of the body. It depends on the nerves involved.
And you're right about symptoms generally not getting worse as the day goes on. Some people do find that heat makes their symptoms worse, again I have no idea why this would be.
Thanx for the clarifications. I didn't know that extreme fatigue was the most common cause. I'll update the FAQ with all the information you have provided.
I do hope the meds help Matrix, perhaps counselling would be an option too. If the thread has helped you then that's great but my worry is that there are a lot of people with MS fears on here and I'm not sure it's a great idea to be talking a lot about the symptoms: e.g., fatigue often accompanies anxiety - are we going to have more people now worrying they have MS because they're tired?
I've started counselling as well.
As for the thread, I though it would present some facts to fear it less. However if you (and others) think it's a bad idea, we can close it.
If it has helped you don't close it! I am glad it has reassured you (it's probably a positive sign that you can be reassured) and perhaps it is good for people to know that MS isn't necessarily as scary as some people might think.
It's just that there seems to be such an overlap between MS/anxiety symptoms that I think there is a need to be careful. As I've said several times before, there are tons of threads on here from people who think the might have MS but I've never seen one person come back and say they do.
I'm often struck by how many symptoms my husband and I seem to have in common. There's even a medication we share. But while his problems are caused by MS, mine are caused by CFS and anxiety x
Yes Jane, I can see your point as well. Let's see what others think...and if it's not good for most people we can close it.
Powered by vBulletin® Version 4.2.5 Copyright © 2024 vBulletin Solutions Inc. All rights reserved.