Thanks Willow, yes very powerless. Considering already how much my quality of life has been impacted with poor mobility. I rely heavily on my vision for other interests, but already that is now taking its toll.
When I was dealing with Optic Neuritis my left eye was basically blind for two weeks. At that time in my life I was running 3 to 8 miles every other day, or more. As my eye was healing and as I ran, I heated up and the damn blurryness would return! Thankfully it did 100% go away and has never returned. : ) That was 17 years ago. Bless you Neil, I pray you will experience much the same as I did. Look forward to hearing from you again. Ciao, Jim
Hi Jim, the eye is such a pain. The blurriness worsens when I eat a meal and digestion (body heat) kick in. A little like when you used to run, this is called Uhthoff’s Phenomenon. My poor mobility impacts my quality of life so much, and I rely on my vision to do other things I enjoy such as reading, or replying to comments 😉 such as this one. It’s never ending.
My vision was the first sign of my MS. I had optic neuritis and woke up with no vision in my left eye, but gradually it came back but in black and white. So1eye was in colour the other was in black and white. Now that was weird but it gradually got colour but in a washed colour. All we can do is take it day by day..
That must have been so scary Bill, and extremely difficult to cope with. I’ve got colour but it’s blurry and not sharp which I’m used to. Day by day, yes.. sometimes hour by hour.
@@NeilBradleyMS Neil, sometimes the occipital area of the brain is affected. Sent a comment a while back about the wahls protocol diet and wondered if you had looked into this. Best wishes to you and theresa. Yes, this condition is very frustrating! maralynmatt@gmail.com
Hi Maralyn, a recent brain MRI has revealed no lesions so no idea what’s going on. I am aware of the Whals, but for me different foods don’t seem to effect me in any way. Apart from, after a meal and digestion starts my mobility symptoms worsen.
Keep up the brave fight. My own personal journey with ms is fairly new but my condition is getting worse and I tend to get down. As always I enjoy very much your videos and updates. God bless you both.
Hi Matthew, thank you 🙏 I’m very sorry to hear your condition is getting worse but I do understand. Sometimes I’ve got no fight left in me. Super pleased you enjoy the videos, thanks for your support.
So sorry to hear you are still struggling with your eye. Its so strange how different MS teams treat MS differently. Where I am they would send you to the eye clinic A&E, put drops in the back of your eye to see if your Optic Nerve is enflamed. Plus when I had Optic Neuritis I was given steroids (but that was 4 years ago so things may have changed now). I really hope your vision comes back soon. Keep us updated x
Thank you Tara, I’m not very impressed with my level of care at the moment as it’s been over a week since I reported it to the hospital. Looks like I’m going to have to chase. 🤷♂️ My MS nurse said they don’t normally treat Optic Neuritis with steroids, but she’s going to speak to my consultant and get back to me. Watch this space. I hope all is well with you. 😊
I had many symptoms before the bad onset of Optic Neuritis however my vision was out in one eye for over a month during Thanksgiving and Christmas. Hang in there,sending you and Theresa good healing energy!!!
Thank you Avril, I’m guessing your vision improved after Christmas so that is reassuring. Thank you for the good healing energy, really feel the need for that right now. Thanks 🙏
Hey Neil, I'm sorry that your vision has not improved as of yet. It sometimes seems to take forever, as we depend so much on our sight. My vision had always been 20/15 in both eyes (better than most people's vision), but after my first bout with optic neuritis without treatment my vision was never the same. After each bout (there has been three) I have had residual dimming, blurring, and sometimes double vision in my left eye. I am now forced to wear 200 strength reading glasses for any close up work, and that sometimes just doesn't help. I am so thankful that so far MS hasn't affected my right eye at all. I know this is scary to go through, but trust that it will get better and it will (and stressing out only makes it worse). Sending hugs across the ocean to you and Theresa, as always you are both in my thoughts and prayers.
Thank you so much Rona, your words are very reassuring to me. My vision has always been better than 20/20 as well, and so this is why it’s so distressing. Sending some hugs 🤗 right back over the ocean to you also. Take care.
Hello you two nice people, I have followed your youtube page for a cuple of days, to read about your symptoms, and today I had my MRI ,was so scared BUT it turned out to be a more plesent experience than I thought, thanks to the very kind radiologist, and a medicament my Nurolog gave me, I had a Brain Spine scan, and are going to se the Neurolog the 9 May, so he can tell me what he found.. Thank you for sharing your wideoes, it helps a lot, dont feel so alone with the symptoms, others have them to- BUT I have to wait and se what Im told from my scan. Greetings from Denmark.
Hello Lillian, and thank you for your message. I’m guessing you were in that scanner for a good 45 mins having had a brain and spine scan together. I’ve been there, but after a while I kind of settled into it. Sounds like you did as well. Good luck with getting your results on the 9th, hope you get some answers.
I have the same problem after eating!! I had never heard the theory about digestion creating body heat, but it makes perfect sense. My fatigue goes away about an hour after eating. Crazy. I have had mild ON, but it goes away. Hang there, Neil. It's always a joy to see Teresa.
Thanks Jane, I noticed this increase in symptoms years ago back in 2007 when all my symptoms first started and I was undiagnosed. I’d eat a meal, and like clockwork shortly afterwards my hands would burn like crazy. They still do a little bit, but worst of all now after a meal I can hardly stand and I’m not kidding either. My vision is now being effected in the same way, so a pattern has formed now. Soon after eating (an hour or two) things settle down.
Neil Bradley I’ve been poking you about diet every time catch up on your videos. Go complete plant based for 6 months and see if it helps. Get your vit d level checked. Be good to know what it is.
Any eye issue is definitely stressful. I think the only way to know for sure is to have an Ophthalmologist check to see if there's any damage to your optic nerve. I certainly understand your frustration. It took 3 months for them to diagnose me...and it seemed to be brought on by flu-like symptoms. I had been quite ill for several days and then noticed my vision was 'off' when I returned to work. It wasn't till testing that I found out I lost some color vision in my left eye. My right eye was compensating for it! All the while, I just thought I had waited too long to get my new eye prescription. And then.....within 7 months, I had a 2nd attack. Optic Neuritis is what led to my MS diagnosis. It is strange...I was very near-sighted and always feared "going blind before I turned 30"....and there I was....29 years old and not knowing what the heck was going on! It's definitely a scary feeling. And then the final MS diagnosis basically totally encompasses all of my worst fears into one. Not that all those fears will occur, they're just a greater possibility than before. Sometimes it feels like a cruel joke to be honest. But I know the only thing to do is try to hope for the best and try and be positive. The first bout of Optic Neuritis....I think it was too late putting me on the IV steroids. When I had the 2nd bout...the pain was terrible, and I got on the IV steroids, followed by tapering of oral Prednisone. It made the headache go away....and thankfully no vision loss associated with my right eye. Personally, I think it helped me. I'd like to think I got on it fast enough and it helped the inflammation go down so that it prevented any potential vision loss on that side. Since the beginning of the diagnosis, I did drastically change my eating habits. I had started reading the Wahl's Protocol. I've heard good things about the "Overcoming Multiple Sclerosis" diet as well, though they are quite opposite to each other in some major ways. I have thought of doing the Autoimmune Protocol (or elimination diet)....to try and pinpoint which particular foods may give me issues. I haven't noticed it affecting MS symptoms per se, but I do definitely notice that some foods just make me feel worse, whether it be the feeling in may stomach or mood-wise. I wish you all the best.
Hi there, that’s exactly what happened to me at the beginning of March. I’d been ill with a cold virus, and this is when I started to notice my vision. In my right eye was blurred. I gave myself time to get better but the blurry eye remains, even as I’m typing this message. For me personally, I’m not a big believer in the diets but that is not to say they don’t work. Ive just not had much success with different foods myself, and I eat very healthily. Rarely get takeaway, and we eat lots of fresh veg every day. Thank you for telling me about your experience with Optic Neuritis, and your MS diagnosis. I read your message with interest, I always find it interesting to hear other people’s experience.
My optic neuritis didnt respond to steroids or plasma exchange. I 'm now permanently blind in my right eye and distorted vision in the other eye and praying my next relapse doesnt go in for the good eye again !
That’s terrible Becky, and I’m really sorry to hear your vision has been attacked so badly. My vision in my right eye is still blurry, three months now and no improvement so I think this is it. Fortunately my left eye is still good, but it’s a worry if I get another attack. One of the first things my MS nurse said is they don’t usually give steroids for ON, as it doesn’t usually resold to them. Look after yourself.
My heart goes out to u, Neil 💪I have some of ur symptoms along with the frequent need to pee and double vison etc but u hang in there and you'll be ok . P.s. you and ur partner are very adorable 😙😊 never give up!
Hi Adam, and thank you for your message. I too pee frequently, in fact it drives me absolutely insane. If I don’t pay attention to my bladder “signals” it will and has ended in disaster if you know what I mean. I’m sorry you have to deal with double vision, is it like this all of the time? Thank you again for your kind words, I’m doing my best not to give up but honestly, it’s difficult at times. My family and loved ones help ground me. Take care of yourself. 🙏
I have hydrocephalus from a car wreck a long time ago. First sign was double vision. To the point I couldn’t see anything. Everything went down hill from there. After a major life changing surgery,had a vp shunt installed. I was able to regain some vision. But lost a lot of vision. My optic nerves are damaged. It will never get better for me. It slowly gets worse. I now wear prism glasses. I have a eye condition as well. Where my eyes do not line up when I’m looking at something. Just don’t put off going to an eye doctor. Best of luck
Thanks Sharee, it sounds like you really struggle with your vision and I’m sorry to hear this. I’ve already seen my Optician, who gave my eyes a clean bill of health. I’ve since contacted my ms nurse and explained what’s happening. She needs to speak to my consultant so may take a few days to get back to me.
Mine they did because mine had almost taken all my sight in my left eye. It got better after the steroids but I do still have a blurry spot. I do wear glasses but when my eye was attacked it looked like I had touched my glasses but when I took them off the spot was still there. It can take up to a year for it to clear up on its own. Depending on how bad it is and how bad it gets before it starts to heal.
That must have been very scary Jessica. My vision is no where near as bad as that, nonetheless it’s still distressing having had perfect vision all my life. My MS nurse says they don’t usually treat it with steroids which is a bit worrying because I’ve not seen any improvement as yet.
Hi Neil, My symptom which led to my diagnosis was optic neuritis. I worked a whole weekend eye pain. Then Monday morning, when I awoke my sight, was totally gone in my left eye. I visited my local optometrist and they looked into my eye with nothing more than a light and a giant magnifying glass and recognized that my optic nerve was swollen. They then forwarded me to my now current neurologists. Then an MRI etc.. I do not remember anything going on other than the eye pain but It could have been slightly blurry before it went dark. You should go back to your optometrists and mention your MS too. I still could see partially after the steroids calmed things down. I still do washed out colour and super bright vision when i look bright screens etc..It feels like when you get eye dilated. It continues today 2 years plus.
Thanks Jason, must have been real scary for you at the time. Glad the steroids calmed things down from you. I had these amazing photos taken of the inside of myeyes, they were so detailed and clear. They talked me through each photo and said they looked perfect. My vision definitely worsens when I’ve eaten.
Hi Kim, that also seems to be the same trend for me. I quite often have a few hours where my vision corrects itself and I think, ohh is it ok now. Then it blurrs again, usually after eating a meal and digestion takes place which generates heat in the body.
Hello Niel, I think I found my twin! You and I are seem to be on the same boat in terms of Symptoms and test results. Everything you talked hit home and when you talked about the test results and now the eye, I had to make contact. I have the same leg, back, eye symptoms; and the kicker, I have clear mri and lumbar results. It's hard to go into details here but if you want to touch base and compare notes, message me and let me know. Best wishes and best of luck.
Hey Alex, wow that’s just amazing! Nice to know I’m not alone, but not nice that you’re suffering all of these horrible symptoms. I’m struggling terribly with vision at the moment. Take care my friend.
Hi Neil. For eating I notice dairy products cause extended types of fatigue. I mostly eat like a vegan which lets me eat and go. For the vision stuff perhaps ask Theresa to watch your eyes while you look forward.
Hi Neil & Teresa, I've had eye problems for 3yrs now, it comes & goes I have it at the moment and everything is fuzzy it's been 3 days and it's also mostly in my right eye but I was telling my nurse when it happens it sometimes feels like I've got an eyelash in my eye but I haven't but it makes me rub my eye which makes it worse, I find also that going on my computer makes it worse so I try not do do that as much when I'm having a flare up of it, it's very frustrating, Hope it clears up quick for you hun xxxx
Thanks Sue, frustrating isn’t the word especially as we suffer so much with our mobility as well. As I can’t move about much or go anywhere now, my eye are a huge part of my quality of life. My right is also becomes very fuzzy especially after eating a meal. Xxx
I'm getting abit of a cold & my God my right eye is doin my head in I'm really tired too, today I stupidly missed my morning meds and I dunno why but I took morning & afternoon meds together and woke up 5hrs later, they knocked me out, Dave said he couldn't wake me lol wont do that again! So I got up ready to go upstairs to watch TV and bounced off everything, my God my balance was terrible, I feel like I've had 5 vodkas lol Hope your doin ok Neil, I know this problem with ya eyes is frustrating I just hope you dont have it too long and it clears up. Hows Teresa's hands? Is she still in pain, I feel for her, it cant be easy having hand pain as you use your hands alot, shes such a lovely lady, I love her I think shes Amazing the way she supports you even though shes in pain herself shes a trouper, Anyway take care both of you and fingers crossed Neil this will clear up for you, It's always lovely to watch your vlogs, they really cheer me up so Thankyou for that & it's great to see you both 😊 Take care luv ya 😘😘 xxxx
Thanks Sue, Teresa is in constant pain with her hands every day but has reached the end of the road with treatment. It’s all about pain management now. Xxx
Hey there... I've missed a few videos while dealing with kidney stones and other issues but I remember watching a video where the doctors said you didn't have lesions and it may not be MS but has it been confirmed you have MS? I know you did a lumbar puncture and watched a few videos where you had great mobility from using diazepam? Sorry just clarifying.. :) I've spent the week at the optometrist too!! If your MS symptoms get worse after eating have you had your thyroid and diabetic tests done?
Kidney stones - ouch! I hope you’ve recovered from these now. Yes I have an official MS diagnosis in 2013 (see older videos) with Imaging, Uhthoff’s Phenomenon (heat intolerance) and classic clinical mobility issues. But yes, all imaging and LP have now come back clear. I’m in the process of waiting for an appointment to see a professor of Neurology. I’ve had all blood tests which have comes back clear. My wife is diabetic so I’ve even tested my own blood sugar levels which are spot on (between 4 and 6). The Diazepam isn’t having such a good effect now, I’m not taking it regularly though. When I do, I feel I do improve very slightly. Get so tired of it all. Thank you for your message.
@@NeilBradleyMS oh ok so I'm not too far off I knew something came back clear and it was mysterious for all involved.. it's such a goofy disease you just never know what's happening if it's MS or something else.. I'm having surgery Monday for kidney stone all other procedures and methods have not worked had a lithotripsy procedure done it didn't work so now have to have full surgery ughh :( oh when I was at optometrist he did special tests for me for neurologist called visual field testing have you had that done?
I’ve not had the visual field tests, but then I’ve only been to a regular Optometrist. I’m hoping when my MS nurse comes back to me, I be asked to see a Neuro Optometrist. Oohhh, those kidney stones sounds stubborn, wishing you luck with the surgery. I’m sure it will go very well. Take care.
Hi Neil, I can totally understand that this is getting you down , I’m surprised they don’t offer you steroids for this ?? , it’s obvious you’re having some kind of a flare up . I’m keeping everything crossed for you that your eyes get better. I don’t notice my symptoms temporarily getting worse after eating. My symptoms just wax and wane in the day like a lot of us do lol !! Could you perhaps asks your neurologist to prescribe you with a course of anti inflammatory medication, there are others that you could perhaps take , they’re called nsaids (non steroidal anti inflammatory). It’s always worth a try , and they might just do the trick and alleviate this additional inflammation. Take care of yourself, Grace
Other than that, I have blurry vision and double vision every day. I go into a food coma after supper. Nice seeing Terisa in the video to, hiya Terisa 💕💞
Hi Andrea, it’s interesting to know your experience with ON. I had a through eye exam at the Opticians including detailed photos of both eyes. They talked me through the photos and they said my eyes are very healthy. Food coma, oh yes I can relate to that. My eye also blurrs every time for a couple of hours after I’ve eaten a meal. For this reason alone it has to be neurological. Ho hum.
It's so funny how different we all are when it comes to this disease. When I eat, my strengths and mobility improves. Whenever I am really weak, I always say, I need food. I turn into a new person once I get some fat and carbs in me. have you made an appointment yet to see the specialist you were going to see due to the fact that you had a negative lumber puncture? Hope all else is going well. I'm sure the situation with your eye causes a lot of anxiety, just because it's again, that unknown. It's interesting that the opthamologist didn't notice anything. I know when I have seen my eye doctor, he is able to look in the back of my eye and assured me that I my optic nerve has not been affected. I know I have a blurry left eye but that is due to really bad astigmatism, which I've had for years, but when I wear glasses, it corrects the problem I see 20/20. I would definitely Make sure you see an eye doctor that specializes in diseases of the eye. Keep us informed. 🤓
Hi, my Ophthalmologist was very thorough, not only did she take detailed photos of my eye she also look into the back of them with the bright light. All very healthy she said. When you eat, I would say that is how the body should be functioning, low on energy you refuel! I’m waiting for an appointment to see the professor, it about a three month wait I think. I just have to sit tight.
The ophthalmologist told me that my optic nerve was curved which was new from the last appointment. Not sure if it’s related to ms but it has something to do with glaucoma. Not sure what is happening with my right eye but it sucks.
Hi Neil. Sorry to hear about your eye issues. I have not yet experienced issues with my eyes from MS, but can definitely relate to the mobility issues, and that fact that it is always something with this damn disease! It seems like if one symptom feels okay, another symptom is worse. It’s so frustrating! So I hear you. Take care😊
I hear you too Lynn, and couldn’t agree more. Just as we settle in to things and think right I’m starting to cope, it’s as if someone thinks we haven’t got enough wrong with us and gives us something else. You take care too👍💪
Hi dean, Unfortunately not. When I had the cold in March my overactive immune systems kicked in and got rid of the cold, but it also damage some good tissue in the optic nerve of my right eye it would appear. Unfortunately this is irreversible.
Thinking of you both and wishing for a quick resolution of the eye issue Neil, I can imagine how powerless you must feel.❤
Thanks Willow, yes very powerless. Considering already how much my quality of life has been impacted with poor mobility. I rely heavily on my vision for other interests, but already that is now taking its toll.
When I was dealing with Optic Neuritis my left eye was basically blind for two weeks. At that time in my life I was running 3 to 8 miles every other day, or more. As my eye was healing and as I ran, I heated up and the damn blurryness would return! Thankfully it did 100% go away and has never returned. : ) That was 17 years ago. Bless you Neil, I pray you will experience much the same as I did. Look forward to hearing from you again. Ciao, Jim
Hi Jim, the eye is such a pain. The blurriness worsens when I eat a meal and digestion (body heat) kick in. A little like when you used to run, this is called Uhthoff’s Phenomenon. My poor mobility impacts my quality of life so much, and I rely on my vision to do other things I enjoy such as reading, or replying to comments 😉 such as this one. It’s never ending.
Yesss after food is horrible..hymmm im glad u mentioned that
Healing thoughts and vibes your way! ❤
Hang in there Neil - take care!
Thank you, I’m trying.
My vision was the first sign of my MS. I had optic neuritis and woke up with no vision in my left eye, but gradually it came back but in black and white. So1eye was in colour the other was in black and white. Now that was weird but it gradually got colour but in a washed colour. All we can do is take it day by day..
That must have been so scary Bill, and extremely difficult to cope with. I’ve got colour but it’s blurry and not sharp which I’m used to. Day by day, yes.. sometimes hour by hour.
@@NeilBradleyMS Neil, sometimes the occipital area of the brain is affected. Sent a comment a while back about the wahls protocol diet and wondered if you had looked into this. Best wishes to you and theresa. Yes, this condition is very frustrating! maralynmatt@gmail.com
Hi Maralyn, a recent brain MRI has revealed no lesions so no idea what’s going on. I am aware of the Whals, but for me different foods don’t seem to effect me in any way. Apart from, after a meal and digestion starts my mobility symptoms worsen.
Hey Bill do color blind test show you a difference in your eyes?
Like your logo!
Keep up the brave fight. My own personal journey with ms is fairly new but my condition is getting worse and I tend to get down. As always I enjoy very much your videos and updates. God bless you both.
Hi Matthew, thank you 🙏 I’m very sorry to hear your condition is getting worse but I do understand. Sometimes I’ve got no fight left in me. Super pleased you enjoy the videos, thanks for your support.
You're not alone, we're in this together.
Thank you 🙏
So sorry to hear you are still struggling with your eye. Its so strange how different MS teams treat MS differently. Where I am they would send you to the eye clinic A&E, put drops in the back of your eye to see if your Optic Nerve is enflamed. Plus when I had Optic Neuritis I was given steroids (but that was 4 years ago so things may have changed now). I really hope your vision comes back soon. Keep us updated x
Thank you Tara, I’m not very impressed with my level of care at the moment as it’s been over a week since I reported it to the hospital. Looks like I’m going to have to chase. 🤷♂️ My MS nurse said they don’t normally treat Optic Neuritis with steroids, but she’s going to speak to my consultant and get back to me. Watch this space. I hope all is well with you. 😊
I had many symptoms before the bad onset of Optic Neuritis however my vision was out in one eye for over a month during Thanksgiving and Christmas. Hang in there,sending you and Theresa good healing energy!!!
Thank you Avril, I’m guessing your vision improved after Christmas so that is reassuring. Thank you for the good healing energy, really feel the need for that right now. Thanks 🙏
Hey Neil, I'm sorry that your vision has not improved as of yet. It sometimes seems to take forever, as we depend so much on our sight. My vision had always been 20/15 in both eyes (better than most people's vision), but after my first bout with optic neuritis without treatment my vision was never the same. After each bout (there has been three) I have had residual dimming, blurring, and sometimes double vision in my left eye. I am now forced to wear 200 strength reading glasses for any close up work, and that sometimes just doesn't help. I am so thankful that so far MS hasn't affected my right eye at all. I know this is scary to go through, but trust that it will get better and it will (and stressing out only makes it worse). Sending hugs across the ocean to you and Theresa, as always you are both in my thoughts and prayers.
Thank you so much Rona, your words are very reassuring to me. My vision has always been better than 20/20 as well, and so this is why it’s so distressing. Sending some hugs 🤗 right back over the ocean to you also. Take care.
Hope you feel better soon. I had a bout of optic neuritis with my TM diagnosis . Lasted for maybe 2 or 3 months and went away.
I’m really hoping mine will too Jon. Thanks 🙏
Hello you two nice people, I have followed your youtube page for a cuple of days, to read about your symptoms, and today I had my MRI ,was so scared BUT it turned out to be a more plesent experience than I thought, thanks to the very kind radiologist, and a medicament my Nurolog gave me, I had a Brain Spine scan, and are going to se the Neurolog the 9 May, so he can tell me what he found.. Thank you for sharing your wideoes, it helps a lot, dont feel so alone with the symptoms, others have them to- BUT I have to wait and se what Im told from my scan. Greetings from Denmark.
Hello Lillian, and thank you for your message. I’m guessing you were in that scanner for a good 45 mins having had a brain and spine scan together. I’ve been there, but after a while I kind of settled into it. Sounds like you did as well. Good luck with getting your results on the 9th, hope you get some answers.
I have the same problem after eating!! I had never heard the theory about digestion creating body heat, but it makes perfect sense. My fatigue goes away about an hour after eating. Crazy.
I have had mild ON, but it goes away. Hang there, Neil. It's always a joy to see Teresa.
Thanks Jane, I noticed this increase in symptoms years ago back in 2007 when all my symptoms first started and I was undiagnosed. I’d eat a meal, and like clockwork shortly afterwards my hands would burn like crazy. They still do a little bit, but worst of all now after a meal I can hardly stand and I’m not kidding either. My vision is now being effected in the same way, so a pattern has formed now. Soon after eating (an hour or two) things settle down.
Neil Bradley I’ve been poking you about diet every time catch up on your videos. Go complete plant based for 6 months and see if it helps.
Get your vit d level checked. Be good to know what it is.
Any eye issue is definitely stressful. I think the only way to know for sure is to have an Ophthalmologist check to see if there's any damage to your optic nerve.
I certainly understand your frustration. It took 3 months for them to diagnose me...and it seemed to be brought on by flu-like symptoms. I had been quite ill for several days and then noticed my vision was 'off' when I returned to work. It wasn't till testing that I found out I lost some color vision in my left eye. My right eye was compensating for it! All the while, I just thought I had waited too long to get my new eye prescription. And then.....within 7 months, I had a 2nd attack. Optic Neuritis is what led to my MS diagnosis. It is strange...I was very near-sighted and always feared "going blind before I turned 30"....and there I was....29 years old and not knowing what the heck was going on! It's definitely a scary feeling.
And then the final MS diagnosis basically totally encompasses all of my worst fears into one. Not that all those fears will occur, they're just a greater possibility than before. Sometimes it feels like a cruel joke to be honest.
But I know the only thing to do is try to hope for the best and try and be positive.
The first bout of Optic Neuritis....I think it was too late putting me on the IV steroids. When I had the 2nd bout...the pain was terrible, and I got on the IV steroids, followed by tapering of oral Prednisone. It made the headache go away....and thankfully no vision loss associated with my right eye. Personally, I think it helped me. I'd like to think I got on it fast enough and it helped the inflammation go down so that it prevented any potential vision loss on that side.
Since the beginning of the diagnosis, I did drastically change my eating habits. I had started reading the Wahl's Protocol. I've heard good things about the "Overcoming Multiple Sclerosis" diet as well, though they are quite opposite to each other in some major ways. I have thought of doing the Autoimmune Protocol (or elimination diet)....to try and pinpoint which particular foods may give me issues. I haven't noticed it affecting MS symptoms per se, but I do definitely notice that some foods just make me feel worse, whether it be the feeling in may stomach or mood-wise.
I wish you all the best.
Hi there, that’s exactly what happened to me at the beginning of March. I’d been ill with a cold virus, and this is when I started to notice my vision. In my right eye was blurred. I gave myself time to get better but the blurry eye remains, even as I’m typing this message.
For me personally, I’m not a big believer in the diets but that is not to say they don’t work. Ive just not had much success with different foods myself, and I eat very healthily. Rarely get takeaway, and we eat lots of fresh veg every day.
Thank you for telling me about your experience with Optic Neuritis, and your MS diagnosis. I read your message with interest, I always find it interesting to hear other people’s experience.
My optic neuritis didnt respond to steroids or plasma exchange. I 'm now permanently blind in my right eye and distorted vision in the other eye and praying my next relapse doesnt go in for the good eye again !
That’s terrible Becky, and I’m really sorry to hear your vision has been attacked so badly. My vision in my right eye is still blurry, three months now and no improvement so I think this is it. Fortunately my left eye is still good, but it’s a worry if I get another attack. One of the first things my MS nurse said is they don’t usually give steroids for ON, as it doesn’t usually resold to them. Look after yourself.
My heart goes out to u, Neil 💪I have some of ur symptoms along with the frequent need to pee and double vison etc but u hang in there and you'll be ok .
P.s. you and ur partner are very adorable 😙😊 never give up!
Hi Adam, and thank you for your message. I too pee frequently, in fact it drives me absolutely insane. If I don’t pay attention to my bladder “signals” it will and has ended in disaster if you know what I mean. I’m sorry you have to deal with double vision, is it like this all of the time? Thank you again for your kind words, I’m doing my best not to give up but honestly, it’s difficult at times. My family and loved ones help ground me. Take care of yourself. 🙏
I have hydrocephalus from a car wreck a long time ago. First sign was double vision. To the point I couldn’t see anything. Everything went down hill from there. After a major life changing surgery,had a vp shunt installed. I was able to regain some vision. But lost a lot of vision. My optic nerves are damaged. It will never get better for me. It slowly gets worse. I now wear prism glasses. I have a eye condition as well. Where my eyes do not line up when I’m looking at something. Just don’t put off going to an eye doctor. Best of luck
Thanks Sharee, it sounds like you really struggle with your vision and I’m sorry to hear this. I’ve already seen my Optician, who gave my eyes a clean bill of health. I’ve since contacted my ms nurse and explained what’s happening. She needs to speak to my consultant so may take a few days to get back to me.
Mine they did because mine had almost taken all my sight in my left eye. It got better after the steroids but I do still have a blurry spot. I do wear glasses but when my eye was attacked it looked like I had touched my glasses but when I took them off the spot was still there. It can take up to a year for it to clear up on its own. Depending on how bad it is and how bad it gets before it starts to heal.
That must have been very scary Jessica. My vision is no where near as bad as that, nonetheless it’s still distressing having had perfect vision all my life. My MS nurse says they don’t usually treat it with steroids which is a bit worrying because I’ve not seen any improvement as yet.
Hi Neil, My symptom which led to my diagnosis was optic neuritis. I worked a whole weekend eye pain. Then Monday morning, when I awoke my sight, was totally gone in my left eye. I visited my local optometrist and they looked into my eye with nothing more than a light and a giant magnifying glass and recognized that my optic nerve was swollen. They then forwarded me to my now current neurologists. Then an MRI etc..
I do not remember anything going on other than the eye pain but It could have been slightly blurry before it went dark. You should go back to your optometrists and mention your MS too. I still could see partially after the steroids calmed things down. I still do washed out colour and super bright vision when i look bright screens etc..It feels like when you get eye dilated. It continues today 2 years plus.
Thanks Jason, must have been real scary for you at the time. Glad the steroids calmed things down from you. I had these amazing photos taken of the inside of myeyes, they were so detailed and clear. They talked me through each photo and said they looked perfect. My vision definitely worsens when I’ve eaten.
@@NeilBradleyMS yes I had no idea what was going on.
I've been having blurred vision mostly morning and evenings. I also have 20/20 vision normally. Saw Ms nurse only week ago and she says Ms flare
Hi Kim, that also seems to be the same trend for me. I quite often have a few hours where my vision corrects itself and I think, ohh is it ok now. Then it blurrs again, usually after eating a meal and digestion takes place which generates heat in the body.
Hello Niel,
I think I found my twin! You and I are seem to be on the same boat in terms of Symptoms and test results. Everything you talked hit home and when you talked about the test results and now the eye, I had to make contact. I have the same leg, back, eye symptoms; and the kicker, I have clear mri and lumbar results. It's hard to go into details here but if you want to touch base and compare notes, message me and let me know.
Best wishes and best of luck.
Hey Alex, wow that’s just amazing! Nice to know I’m not alone, but not nice that you’re suffering all of these horrible symptoms. I’m struggling terribly with vision at the moment. Take care my friend.
Hi Neil. For eating I notice dairy products cause extended types of fatigue. I mostly eat like a vegan which lets me eat and go. For the vision stuff perhaps ask Theresa to watch your eyes while you look forward.
Thanks Jared, I don’t eat much dairy but I’ll watch out for that. 👍
Hi Neil & Teresa,
I've had eye problems for 3yrs now, it comes & goes I have it at the moment and everything is fuzzy it's been 3 days and it's also mostly in my right eye but I was telling my nurse when it happens it sometimes feels like I've got an eyelash in my eye but I haven't but it makes me rub my eye which makes it worse, I find also that going on my computer makes it worse so I try not do do that as much when I'm having a flare up of it, it's very frustrating,
Hope it clears up quick for you hun xxxx
Thanks Sue, frustrating isn’t the word especially as we suffer so much with our mobility as well. As I can’t move about much or go anywhere now, my eye are a huge part of my quality of life. My right is also becomes very fuzzy especially after eating a meal. Xxx
@@NeilBradleyMS
Weird you saying about how you feel after a meal, I get really hot and have to put the fan on me 🤣😂
I'm getting abit of a cold & my God my right eye is doin my head in I'm really tired too, today I stupidly missed my morning meds and I dunno why but I took morning & afternoon meds together and woke up 5hrs later, they knocked me out, Dave said he couldn't wake me lol wont do that again! So I got up ready to go upstairs to watch TV and bounced off everything, my God my balance was terrible, I feel like I've had 5 vodkas lol
Hope your doin ok Neil, I know this problem with ya eyes is frustrating I just hope you dont have it too long and it clears up.
Hows Teresa's hands? Is she still in pain, I feel for her, it cant be easy having hand pain as you use your hands alot, shes such a lovely lady, I love her I think shes Amazing the way she supports you even though shes in pain herself shes a trouper,
Anyway take care both of you and fingers crossed Neil this will clear up for you,
It's always lovely to watch your vlogs, they really cheer me up so Thankyou for that & it's great to see you both 😊
Take care luv ya 😘😘 xxxx
Thanks Sue, Teresa is in constant pain with her hands every day but has reached the end of the road with treatment. It’s all about pain management now. Xxx
Hey there... I've missed a few videos while dealing with kidney stones and other issues but I remember watching a video where the doctors said you didn't have lesions and it may not be MS but has it been confirmed you have MS? I know you did a lumbar puncture and watched a few videos where you had great mobility from using diazepam? Sorry just clarifying.. :) I've spent the week at the optometrist too!! If your MS symptoms get worse after eating have you had your thyroid and diabetic tests done?
Kidney stones - ouch! I hope you’ve recovered from these now.
Yes I have an official MS diagnosis in 2013 (see older videos) with Imaging, Uhthoff’s Phenomenon (heat intolerance) and classic clinical mobility issues. But yes, all imaging and LP have now come back clear. I’m in the process of waiting for an appointment to see a professor of Neurology.
I’ve had all blood tests which have comes back clear. My wife is diabetic so I’ve even tested my own blood sugar levels which are spot on (between 4 and 6).
The Diazepam isn’t having such a good effect now, I’m not taking it regularly though. When I do, I feel I do improve very slightly. Get so tired of it all.
Thank you for your message.
@@NeilBradleyMS oh ok so I'm not too far off I knew something came back clear and it was mysterious for all involved.. it's such a goofy disease you just never know what's happening if it's MS or something else.. I'm having surgery Monday for kidney stone all other procedures and methods have not worked had a lithotripsy procedure done it didn't work so now have to have full surgery ughh :( oh when I was at optometrist he did special tests for me for neurologist called visual field testing have you had that done?
I’ve not had the visual field tests, but then I’ve only been to a regular Optometrist. I’m hoping when my MS nurse comes back to me, I be asked to see a Neuro Optometrist. Oohhh, those kidney stones sounds stubborn, wishing you luck with the surgery. I’m sure it will go very well. Take care.
@@NeilBradleyMS this was thru regular optometrist but he is excellent. Good luck i hope you find some answers ! 💜
Thank you very much🙏
Hi Neil, I can totally understand that this is getting you down , I’m surprised they don’t offer you steroids for this ?? , it’s obvious you’re having some kind of a flare up . I’m keeping everything crossed for you that your eyes get better. I don’t notice my symptoms temporarily getting worse after eating. My symptoms just wax and wane in the day like a lot of us do lol !! Could you perhaps asks your neurologist to prescribe you with a course of anti inflammatory medication, there are others that you could perhaps take , they’re called nsaids (non steroidal anti inflammatory). It’s always worth a try , and they might just do the trick and alleviate this additional inflammation. Take care of yourself, Grace
I have eye movement pain and partial vision loss with ON, the Ophthalmologist looks at my optic nerve and see if it's inflamed.
Other than that, I have blurry vision and double vision every day. I go into a food coma after supper. Nice seeing Terisa in the video to, hiya Terisa 💕💞
Hi Andrea, it’s interesting to know your experience with ON. I had a through eye exam at the Opticians including detailed photos of both eyes. They talked me through the photos and they said my eyes are very healthy. Food coma, oh yes I can relate to that. My eye also blurrs every time for a couple of hours after I’ve eaten a meal. For this reason alone it has to be neurological. Ho hum.
It's so funny how different we all are when it comes to this disease. When I eat, my strengths and mobility improves. Whenever I am really weak, I always say, I need food. I turn into a new person once I get some fat and carbs in me. have you made an appointment yet to see the specialist you were going to see due to the fact that you had a negative lumber puncture? Hope all else is going well. I'm sure the situation with your eye causes a lot of anxiety, just because it's again, that unknown. It's interesting that the opthamologist didn't notice anything. I know when I have seen my eye doctor, he is able to look in the back of my eye and assured me that I my optic nerve has not been affected. I know I have a blurry left eye but that is due to really bad astigmatism, which I've had for years, but when I wear glasses, it corrects the problem I see 20/20. I would definitely Make sure you see an eye doctor that specializes in diseases of the eye. Keep us informed. 🤓
Hi, my Ophthalmologist was very thorough, not only did she take detailed photos of my eye she also look into the back of them with the bright light. All very healthy she said. When you eat, I would say that is how the body should be functioning, low on energy you refuel! I’m waiting for an appointment to see the professor, it about a three month wait I think. I just have to sit tight.
I have one eye that is blurry, sometimes double vision in that eye. Vision has changed in the eye in last 6 months.
It’s just horrible Patty, I’m struggling to come to terms with this.
The ophthalmologist told me that my optic nerve was curved which was new from the last appointment. Not sure if it’s related to ms but it has something to do with glaucoma. Not sure what is happening with my right eye but it sucks.
Sorry the hear this Patty, yes it really does suck. Are you still off work at the moment?
I was told I can no longer do my job.
Hi Neil. Sorry to hear about your eye issues. I have not yet experienced issues with my eyes from MS, but can definitely relate to the mobility issues, and that fact that it is always something with this damn disease! It seems like if one symptom feels okay, another symptom is worse. It’s so frustrating! So I hear you. Take care😊
I hear you too Lynn, and couldn’t agree more. Just as we settle in to things and think right I’m starting to cope, it’s as if someone thinks we haven’t got enough wrong with us and gives us something else. You take care too👍💪
@@NeilBradleyMS Are you familiar with the channel Aaron Boster MD? I highly recommend it
Hi Lynn, yes I’ve been a subscriber for some time to Aaron.
Can you call your neurologist Neil and maybe have another mri? It may show optic nerve damage.🙏
Hi Karen, my MS nurse is in the process of talking to my consultant and she’s going to call me back with a plan hopefully.
Neil Bradley 🙏🧡
So there is no treatment for optic neuritis then? I can understand why is so frustrating for you then, Neil.
Hi dean, Unfortunately not. When I had the cold in March my overactive immune systems kicked in and got rid of the cold, but it also damage some good tissue in the optic nerve of my right eye it would appear. Unfortunately this is irreversible.