My Early Multiple Sclerosis Symptoms
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- čas přidán 11. 09. 2024
- Dry eyes can be a cause of Multiple Sclerosis and I have suffered with this condition since I was 19 years old. It was one of my earliest symptoms of MS along with numbness of my toes and feet but it was something that went unrecognised as a linked symptom of MS and it took me 20 years to finally get some relief from it.
Multiple Sclerosis can lead to severe dry eye. In MS, poor corneal sensory impulse conduction can result in insufficient tear production, and lagophthalmos associated ded can occur (the inibility to close the eyelids properly) due to poor motor control. Things like punctal plugs, humidifiers and blepharitis therapies may be crucial.
-extract taken from review of optometry
In this video I want to share my symptoms, what I did to help myself and my dry eyes, explaining the things I have tried and showing you the things that I use now to help give my dry eye relief. I hope this may help others who may be going through similar things.
Link to googles : dryeyeshop.com...
Link to Blephasol:
www.visionexpr...
(This is the cheapest online price I've found so far, I'm not sure if they ship world wide but if not this is sold on Amazon too)
Link to Thealoz Duo Eyedrops:
www.visionexpr... (again this is a UK based website so not sure if they ship worldwide)
Amazon do a great deal for 3 x 10ml for £31.89 which works out a lot cheaper than the normal £13.99. But you should be able to get this on prescription.
Link to the optase heat mask:
www.walgreens....
Or
scopeeyecare.c...
These seem to be the most reasonable prices online
How the mask works - The heat mask absorbs moisture from the air.
Once heat activated it releases moist heat from the mask onto the eye lids.
This then loosens the oils in the Meibomian Glands allowing the oil to flow more freely.
The oil helps prevent evaporation of your natural tears and provides symptom relief from dry eyes.
I am now at a very good place in my life with my eyes, I barely think about them and by doing this routine daily it helps keep the dry eye under control. I've also not had a corneal erosion for 6 years. From where my eyes were and where I was mentally, I am a different person because of a few simple changes, if you are going through the same thing I hope these changes will help you as much as they did me.
Thank you very much ❤️ I was diagnosed in 2019. I thought Ocrevus had fixed everything 😢 I started developing this and it has been so painful. I went to the ophthalmologist and I was left feeling like if I was exaggerating. I feel like I have been punched on my eyes and my life really. You brought me tears of happiness, thank you for being so brave to help MSers.
Ah Anton I really feel for you so much, don't dispair with this please you can help yourself, it will never fully go away but there are ways to manage it. If I were to suggest anything, definitely get the heated eye pad as that helps the meibomian glands to produce your eyes natural oil. Good luck with everything, there is always a solution ❤️
THANK YOU!!! I've been suffering from dry eyes for years (I've had MS for over 25 yrs) and I'm developing scar tissue on the cornea of both eyes and I can't afford the drops they prescribe. They are ridiculously expensive. I would wear those glasses when I'm in nature, absolutley!! Thank you for the recommendations, I will look them up 👍🏼❤.
Hi, you're welcome. The dryeyeshop.com is where you will find the goggles (and they have such a huge range) as well as so much information about dry eye. There is also the dryeyezone.com which is a forum where so many people with dry eye conditions get together to share information and support each other it really helped me so much. The prescription eye drops can be so expensive but the thealoz eyedrops that I use at £10.00 from the chemist and can be brought over the counter as can the blephasol.
Good luck and I hope they help your eyes.
You had me wondering what the deal was with the goofy glasses in the thumbnail😁
It so wise to take care of your eyes. Problems with the eyes can be scary. Especially with MS . I hope you get over that bug soon.
It wasn't supposed to go out until Monday.. Whoops...it was set to public instead of private 😬 a new thumbnail is required definitely! Ha. Hope you're well
yep goofy, made me laugh, and Laura owned it, It's the only way.
Thank you SO MUCH! For months and months I’ve been dealing with extreme dry eyes...especially upon waking! I can’t describe the pain I feel when trying to open my eyes and then trying to blink! My eyes are always red and itchy! I was finally able to see my ophthalmologist (due to the Covid19) but she said it’s dry eyes and to use drops. She found nothing wrong (thank goodness) but I have that sinking feeling like I used to get when a doctor told me I was fine, when I knew something was wrong. I will contact my neurologist and look for the products you referenced. Love your videos. I find them very helpful. I feel I’m still new to this...December 23 will be 5 years that I was diagnosed 🙄.
staying strong and positive is the hardest thing to stay on top of, (I know)
I struggle with that on a daily basis, as we all do,
You are an MS Warrior.
Hi Carol, you're welcome. I know exactly what you're going through! I forgot to mention that the products that I show in the video can be brought over the counter without prescription even the thealoz duo eyedrops. I'm in the UK, not sure which part of the world you're in but I'm sure you would be able to get these online also from a reputable pharmaceutical company. If you are also walking up with extreme dry eyes, then you can also get something called lacri-lube eye ointment. It's thicker than a drop and will lubricate your eyes throughout the night. My eyes got so dry, and in the morning on wakening my own eyelids ripped the outer most layer of skin off causing my corneal erosion - this will help to keep them lubricated and not allow this to happen. The goggles although awful to look at are a god send and you can purchase these on a website called dry eye zone - here you will also get sooo much information on dry eyes and how to help them including how to make your own rice baggys for your eyes 👍. 5 years is a long time, but at the same time seems like no time at all to understand this disease. It does happen though, in time and the more information out there to arm yourself with the better prepared you are. Hope these help, let me know how you get on 🧡
@@lauraironstalksms thank you so much for your help and support, Laura. How awful for you that a layer was ripped off! I can absolutely believe it because there were mornings that it felt like my eyes were “stuck” to my lids. I’m in the US so I’ll google where to get the products. As for the glasses...I’m sure it will give my family a laugh! Lol. I never thought it could be related to MS so thank you for sharing your story with the world! Please stay safe! 🧡
You're really more than welcome, if I feel I've helped then I honestly feel happy.
Here's the link to the products:
Goggles
dryeyeshop.com/collections/over-rx/products/evader2
They do so many different styles, if you don't want the funny looking googles they have more discreet glasses 😊. I've had the micky taken so much but I laugh along with them ha.
I've googled both the blephasol and the thealoz duo (shipping to USA) amazon seems to come up and looks like they are with a reputable company so they might ship to you and its the same prices. Xailin Night Lubricating Eye is an alternative to the lacri-lube ointment and again it looks like you can get this online.
Good luck with it, once you get dry eye under control you barely even think about it! I just wish I'd have known all those years ago too but it's all good now and I have happy eyes 🧡
@@lauraironstalksms oh yes! I can’t begin to tell you how much you’ve help me! I’m sure you’ve helped others that you are just not aware of! I did see the Thealoz drops on Amazon. So I’ll try it and I also can get the others from a local pharmacy (I’m a bit shocked). I was looking at the goggles and yes, many different kinds. I will order the ones that look like yours. The mask I was hoping to find locally. I’m sure I can but it’s sometimes more difficult to search for items online as opposed to shopping at the local medical supply store. I’m also thinking the mask will probably (hopefully) help the horrendous “MS” headaches! Thank you again, Laura! I’ll drop you a line once I get all the items and let you know how it all goes. Please stay safe! 🧡
Also I have to say this is a great video so thank you . I am definitely going to try sort my eyes out they’re irritating me so much xxx
Great news, I have dry eyes with ms, thankyou
I sympathise with you! I have dry eyes too, however I have finally managed to keep them relatively under control. I have done a video on this which might be of some help to you?
It's under my early MS symptoms - dry eyes.
Amazing Channel!
Thank you
Hey fellow MS WARRIORS.
to start with, I did not there was vitamin P.
MY first symptom was a cloudy left eye.
second symptom i went blind in the left eye.
i now realise I was suffering fatigue and weakness.
even today my left has pain when I move it, but that varys on a weekly bases.
the dry eye bit, I was not aware of, and again you have answered a issue with my left eye and sometimes both.
it feels like I have a bit of grit in the corner of my left eye (no surprize there)
I always put it down to conjunctivitis, as I'v always ridden motorbikes.
Up until 5 years ago, I parked it up and I haven't had the energy to or passion for my bike,
I even considered selling it.
If you know me then you would have known something wasn't right with me, (Selling my bike Is Never Going To Happen,) I went to my garage looked at my bike , and knew at that point I was having problems, and admitted to myself.
It was very soon after that,
my relapse really kicked in. This turned out to be the the turning point in my now new life, living with my MS, not living with my mums MS.
I have every intention in getting my bike back on the road,
and starting a motorcycle club M.C.C.
this journey will be recorded and uploaded on utube, there I'v said it out loud, I will make it happen no matter what stands in my way. I give you the word of a biker. (We stand by our word) I want to travlel around the UK bringing awareness for ,Mental health, living with depression, living with autism or any of the spectrum,
how to live on a budget with MS.
advice with DWP,(you are in your honeymoon period with the DWP) belivie me it won't last long before they are trying to get you to take a job you know is no good for you, and if you don't take the job, they will sanction you, THERE WORD FOR STOPPING YOUR MONEY.
that in mind, can you get any of the eye treatment from you Doctor, on the NHS, If not how much was it, where did you get from, Where and whats the cheapest place you can get it.
and are there any alturnatives. This is what people claiming a benefit will want to know.
your goggles, I would ware on my Bike, cheap version, large swimming goggles, who gives a monkeys what you look like in your own castle, but you did own that goggle look,
A Sexy look, not so much, but you did make me laugh,
Laura you know what I'm going to ask, so i'll be direct, WHEN ?
keep fighting all MS Warriors, we might lose the odd fight. But we will win the war,
love peace and happy ness to all you hold dear in your heart, (by me)
Hey Kit, nice to hear from you and thanks for the questions about the products which are really good points so I'll start with that first :
The Thealoz duo eyedrops are available on prescription.
Here in Wales prescriptions are free (in England one prescription is £9.15) I'm not sure how it would work for other countries?
The blephasol is not currently on prescription - I've tried for the past 5 years but unfortunately they can't add this on. I buy this here in Boots the chemist and its £10.00 for a 100ml bottle which lasts me 1 month.
I purchased the googles online from the dryeyeshop.com and they were $35 I've never had to replace this and I've had it for 6 years. (this is an amazing website not just for products but for help, support and information on dry eyes)
The optase moist heat mask is £9.00 which I ordered online but again I've had this for a few years now and it's still going strong!
I'll leave a separate message about your other comments, hope this helps.
Oh yes Vit P helps to build up the body's immune system - got these bilberry in Holland and Barratt but equally just eat lots of fresh fruit and veg too.
Thanks for sharing the story on your eyes and the plan for your motor cycle journey, it sounds like a really great idea and one which I definitely would like to follow. I especially like the part about how to live on a budget with MS and the part around how you deal with your depression. Bringing awareness about mental health issues is vital, these things are happening to people everyday all over the world but it's invisible. It's also a symptom that creeps up on you when you have a chronic illness because of ongoing pain which sometimes makes things difficult to deal with. Don't sell your bike, it sounds like it's a huge part of who you are and a place to escape to and we all need that place to feel good. Proud of you and what you're doing, If you need any help with anything just shout.
@@lauraironstalksms Thanks, your words have weight,
they are appreciated thank you, and that's from the heart.
You have been inpart, responsible for me making this life changing idea.
( I may have mentioned that) and I would love it if you came on that journey,
the role you play can be as little or as big as you make it, but you will be a founding member regardless, just a mention on your channel every now and then gets you lifetime membership, and hopefully a worldwide M.C.C platform for you and your channel, but I want to get the British meda involved at some point to spread our message It's going to take about a year to get off the ground, that's how much time I have set myself so it's all flexibel, i have to get my head strait and on the Icrevus that's i call it, and I cant not get MS news on board, anyone really'
get healthy, start my new life, learn how all of this shit works ???
hopefully you can help me there. As I know f.....all about how or what i need to do a vid.
Is it fairly new to you, I can learn from you if that's ok.
and have you worked out what my other question is going to be
Yes of course I can help, let me know what you need me to do. If it's easier get me on email
@@lauraironstalksms cool, thank you founding member, my email is KitShrapnel@gmail.com
you might be the one 2 friends I have left, even my sister is blanking me, not because of my MS, she still hasn't heard, I think??
I haven't told her, she has her own baggage, from childhood.
not that i want to off load,
I have plans to make, and this IS where it all started. The new beginning
Eye problems as a kid eye pain and even in my left eye!
tk I do eye inflammation every month itchy painful Red eye light painful more than à year along ms sx can wait to have my Mri
DR Aaron has posted 7/12/20
Oh yes, EDSS scores. This is really important information. Has yours changed over the years?
@@lauraironstalksms Thats going to take me a moment to work out, plan on doing it later today, keep you posted, I did try earlyer but it's a bit hard to be confident i'm heading for the right box? it's the rectrospective look back that's throws me out.
Could you actually have Sjogrens? Sometimes that’s misdiagnosed as MS and has very similar symptoms. Up to 18% of people who are diagnosed with MS are misdiagnosed. There are blood tests to check for Sjogrens. Hallmark is horrible dry eyes. There is also another disease called neuromyelitis optica spectrum disorder which can also mimic MS and there are specific blood tests for that too. Many neurologists are too lazy to rule other things in/out and call it MS.
Hi, I was tested for Sjögren's syndrome but the results came back negative.. I think I've had way too many symptoms that match MS and my dry eye issue is pretty much kept under control now with a cleansing eyelid routine, along with dry eye drops and a heated mask. But I did wonder myself years ago too wetherspoons it was this, but my diagnosis came back as a firm MS result. I don't think they'd have put me on the lemtrada blinded trial if they weren't sure, but then again you never know! Thanks for taking the time to write
@@lauraironstalksms has the lemtrada reduced or eliminated relapses for you?
Hi, yes it did. I had a very bad relapse in 2008 which led me onto the blinded trial with alemtuzumab (lemtrada) I was relapse free for just over 10 years until I had a relapse in 2019
My doctor said I can’t have ms because when my leg stops working it lasts a few hours or days and that people with ms lose control completely forever. I am certain I have ms. I have done extensive research. I just know this isn’t right . But they have referred me to a chronic fatigue service, aka M.E. What u say about eyes Is me this evening , I thought it’s an allergy or my make up. But it’s in the corners and lash line. I too have dry eyes and I have ocular ulcers. My eyes itch so much I’ve basically no eye lashes left because I rub and pull them so much. I have intense migraines. Sound sensitivity and my skin hurts to even be touched on my legs. They have diagnosed me with hypersensitivity for that. I Also have pins and needles in my scalp , and face and now all over body, buttocks mainly and face and legs. My neck keeps randomly feeling like whip lash if I move a certain way too. Please tell me where I can see a person who actually listens because my life has changed so much. I used too actually have a life! I’m now so drained and fed up I’m half the person I was mentally xxxx
Mrs Rose, I'm so sorry. I really understand what you wrote there. Going through stuff and feeling as though you can't get to the bottom of things because people don't understand your symptoms is so difficult. Personally, I never see my doctor for anything that's related to my MS because many of them are not specialised in this area and I find myself just being sent back to my neurologist again anyway. A neurologist would be a good point of contact (I'm not sure where you are based and how it would work to see someone where you are?) The lash line thing I understand too, everyone kept looking to my eyes for the problem but dry eye starts with your eyelids and the meibomian glands which produce the oily substance to lubricate your eyes. That needs to be dealt with (the mask in the video will definitely help you with your eyes as a start) Do you have chronic fatigue? You said you get headaches too? I get headaches pretty much all the time, I have to manage these with meds.
The last thing is that symptoms with MS can last days, weeks, months or years (it can also be longer) but it depends on what's going on in the body.
Maybe try and organise to see a neurologist if possible and maybe get an MRI done? These are generally the initial steps to take. Good luck
@@lauraironstalksms thank you I am going to talk to them today. I will call my gp and ask to be referred. Yes I have been diagnosed with chronic fatigue so far. These migraines are making me so moody and I find my self
Really short tempered which isn’t like me at all xxxx
I think your the only one that can make goggles look sexy....
I'm sure there are so many others who can do these Googles justice 😎