Apology | Continued Visual Difficulties | MS & Optic Neuritis
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- Опубліковано 13 кві 2019
- I'm still really struggling with my vision, and I'm having difficulty with close up. I've also been in touch with my MS nurse.
Thank you everybody for your continued support.
Neil & Teresa.
You're doing the right thing, Neil with technology, should this happen again. Loving how much you and Teresa genuinly support each other. :)
Thank you Dean.
Hi Guys!! So sorry for the issues with the eye. If you see a Doctor of Optometrics,they can see and I've had mine send me for steroids. Sending you all healing vibes!!
Neil, please please please don't let this stress you out. I lost all sight in 1 eye and about 50% in the other. It has got better and it will for you. The stress is going to do you more harm than this Relapse.
Thanks Ian, I’m trying my best to adapt and cope. Hope you’re well.
God bless you both
No need to apologize this is life with a chronic condition! You've always responded to me and especially with what is happening with your right eye and vision overall. Get well my dear! 💕
Thank you Cariad 🙏
I’m sorry to hear you’re still having problems with your eye Neil, that sounds really tough 😕 & I’m so sorry about the situation with your doctors & the difficulty you’re having with accessing treatment, it doesn’t make sense for them to put so much emphasis on your diagnosis when you already know that steroids help you. & just liking our comments is more than enough for me & the rest of your lovely viewers. I have my fingers crossed for you that things start to improve a little bit soon x
Thanks Georgina, yes things are pretty tough at the moment. As you say I’m going to be emphasising precisely those thoughts about treatment when I speak to my MS nurse next week. Hope all is well with you. x
Vision problems are definitely scary. I have had optic neuritis twice - the second time it was quite bad - so I can relate. I said no to steroids (and was also told that they rarely work when it comes to optic neuritis), and I don´t have any noticeable effects of it today. But I really do understand your frustration, and the wish for steroids as your mobility has also gotten pretty bad again, which I am so sorry to hear. I am glad you contacted your nurse, because it´s just not right to leave you to yourself while you feel worse and worse. I HOPE you will get an appointment with that professor dude very soon. This is your life we´re talking about, so you just keep contacting them and bugging them if necessary.
No worries about not responding to comments. I think everyone will understand. Take good care of yourself, Neil.
And hi Teresa! Once again it´s clear that you are gold to Neil and such a great support to him (and I have no doubt he is the same to you)
Thanks Rikke. 🙏
Go to opticians Monday Neil . They will be able to tell you straight away if it’s optic neuritis or not . They can see the optic discs and nerves. If you’ve been in the last year it doesn’t matter if you explain to them why you need a re test you will still get it free. Quicker than waiting for referral.I used to work in optics.
I’ve had blurred vision for 2 years that came out of the blue and still no better . Had my follow up professor neuro appointment last Thursday . My mri spinal is all clear just bulging discs no lesions. So it’s a migraine and Fibromyalgia diagnosis. Even with saddle numbness and weakness Mobility issues ,apparently fibromyalgia can do that . He’s the professor so I have to hope he’s right and carry on regardless.
All the best Angie
Hi Angie, I’m amazed it’s Fibro diagnosis especially with weakness issues as well.
Neil Bradley yep and tremors and double vision/ blurred vision. Dreadful numbness and pain .
To me I’m kind of pleased because I’m hoping the progression won’t be as bad as MS . Even though he said Fibromyalgia can put you on crutches/ in a wheelchair. It’s a lot worse than people seem to think . Hope you got to the opticians. I went when my blurred vision started, to rule out optic neuritis.
It’s certainly opened my eyes, I’m going to do some research on Fibro. I went to the Opticians about two weeks ago, passed with flying colours. Had really detailed photos of my eyes taken showing the insides, they examined them with me and my are were very healthy. So not sure what to think, feel at such a loss.
Neil Bradley I know how you feel Mate it’s horrible not knowing. If you’ve only just been to the opticians I doubt it’s optic neuritis which is great news.I can tell you though mine has been blurred like this for 2 years and it sucks they don’t know why exactly. I hope you get your prof appointment soon. I paid private as it was a year I’d waited and I was peed off waiting . It’s only £200 if u can afford it ,might be worth going private . He did all the necessary scans and tests after on the Nhs for me . Keep your chin up least you’ve got the lovely Mrs B x
Sorry to hear your still having issues. I fully understand your worries. I hope it clears up soon for you xx
Hi Neil. Sorry to hear about your vision issue. I had a terrible experience like two years ago with mine. If I looked straight ahead, I had no problems, but if I looked side ways the image started to move left and right very fast. It was crazy. But thanks God it haven’t happened again. So sorry for your issue. By the way I wanted to let you know that I am doing very well with Ocrevus. After one year, better balance, better cognitive response, and my last MRI’s that were done last month showed no activity or new lesions and the doctor was very happy and surprised because my biggest lesion on my spinal cord had shrunk a bit. That’s the one that affects the most the numbness and weakness in my legs. Is like the size of a jellybean but it did shrink with Ocrevus. So the mes is doing well. No side effects till now. Thanks be to God. Praying that you get better soon. Say hi to Teresa. Blessings to both. 🤗 Stay strong 💪🏻
Thanks for that Anthony, and I’m so so pleased that Ocrevus is suiting you and shrinking lesions. Amazing! Best regards. Neil.
No need to apologise, I can understand the frustration too. Iv been waiting for a c-2 nerve block for a year now for occipital neuralgia. That was put down as a urgent referral! Look after yourself guys
Thanks Adele, good luck with that .. and you too.
Hello you two. Firstly, you WILL be back. I could not reply to your last video as unwell and nasty fingers/touch feeling. ( and told off by our Teresa😢 )
However, most importantly we all know how important this Channel is to you, most of us input a little of our own experiences. It is important to us, and I always try to pop in for an update if you don't post a video.
So everyone would understand if you can't reply and certainly if you can't no matter, as everyone wishes you both good health and improvement daily. Time for a trip to A&E perhaps?.......
Thanks Mark, I’m just trying to get through each day. Some days it’s much worse than others. I’m hoping it doesn’t come to A&E, we shall see.
I too suffered with neuritis for years they suggested that I wear a patch that has helped me because it kept me from using the eye which helped calm the neuritis and helped decrease the pain, I at times just wanted them to take the daggone eye out or I was, but each time the patch proved to work. Stay Strong!
No worries. We love you.
Thanks Jane🙏
Don’t worry Neil we all know what a wonderful person you are and what you are going through. Thank God you have a supportive wife to help you .. take care Neil
Thank you 🙏Rodney, your message really means a lot.
Dear Neil and Theresa, My heart goes out to you concerning your current issues with your eyes and mobility. It is so true that eye issues can cause so much fatigue and distress. Your eyes send messages to the brain and when they are out of synch with each it creates so many problems. What is very distressing is the feeling of as you put it " being dumped" just because they can not place a diagnosis on your current symptoms. I have lost so much faith in neurology. If you don't fit in a neat little box which they can check off then you fall into a gray area. I had a neurologist last fall tell me ( all within a ten-minute exam) that I had FND which is some sort of conversion disorder. I had a hard time accepting that diagnosis and I am so glad I didn't because last week I finally had an MRI of the brain and cervical neck where they discovered a tumor on my c7 vertebrae. So now they are taking my symptoms a bit more seriously. The last straw was when the neck tremors started to affect my eyes. My eyes would wobble as I walked and it is very distressing and tiring. The fatigue at the end of the day was unbelievable! We always have to be our own health advocates and push for answers. My thoughts are with you as you try to push your way through this roadblock. I hope your consultant can help you quickly so you can get back your quality of life. I miss seeing videos of you walking around in your garden!! Love and hugs to you both, Tamara
Thanks Tamara, wow a tumor on c7.. this explains all your symptoms. What’s the next step, is it possible to have it removed?
@@NeilBradleyMS thank you so much for replying as I know it is difficult for you to read at this time. I have an appointment tomorrow to see what the next step is. Fingers crossed that it is benign and treatable.
Fingers crossed 🤞 for you Tamara. Keep me posted, we’re thinking of you.
I totally understand what you're saying no body is taking notice of what iam saying with my feet and legs not working iam constantly hurting my feet with my legs just stop moving when walking its fruststating
Bless you Ann, yes it’s very frustrating isn’t it especially when you feel nobody is listening. I’m up against the same problems as well. Sending thoughts. 💞
Sorry for everything you’re going through Neil. The system is horrible.....I know.
Big hug to both of you!
Thanks Linda 🤗
Have you thought about a patch for that as I think it would help you.😉 And thanks for me being one you replied to.
Yeah I have Adrian, feel I need to keep using the eye though.
Hi Neil. No worries at all if you don’t respond to comments. I hope your eye improves. It is so frustrating dealing with the medical system when something is wrong. Peace to you and your lovely wife. You two are very cute together🥰
Thanks Lynn 🙏
First thing I thought of when watching was a patch. Hi to Teresa. I empathise with your frustration. Be strong 🤗
Thanks Nik🙏
When my eye acts up I have difficulty typing. I have alot of spelling errors. I think because I have distance issues with my eye sight. In terms of doctors, I've had 8 nuerology appointments and only seen the Same doctor once. Continuity can be a real problem from one doctor to the next, and I find that I spend half of each appointment giving background information on previously discussed issues. It's can be quite annoying. Good to hear from you both and I wish the best.
Thanks Matthew, explaining the same problem over and over is definitely a pain. Especially when it should be written up in your notes. Take care.
We understand
Hi Neil,please please go and see an optician.I had to go recently for a check up and I told her I have ms.They will tell you there and then if you have a flare up of optic neuritis.Its better than all this uncertainty.It could be something else not related to ms.Alot gets blamed on ms.In January I thought I had ms hug.It turned out to be a blood clot on both lungs! That's why I had out of puff feeling.Its caused by lack of mobility from the ms.I have blood thinners now and have to try and remember how I felt during that build to that diagnosis.Doc said I am now five times more likely to get another clot.please go so as too rule it in or out.sorry you so frustrated ,I do understand that myself.Be kind to yourself and chill.stress is a killer Neil.It will pan out and you will feel better.God bless to you both.😘
Hi Sharon, I’ve seen an Optician who gave me the all clear. They even took really sharp photos of my eyes which they said were in perfect condition. I saw the photos, they were good. Wow blood clot on the lung, that can be life threatening. So pleased they caught it in time. I always try my best every day to do exercises and a small walk, it really important to keep moving isn’t it.
Steroids have never helped my vision and have been told it generally doesn't. My meds however need to change and that may improve it.....may.
During my relapse my eyes go blurry and I get double vision. Usually when flare up over it goes back to normal to a point never fully. As far as the steroids go with ms it can make the next relapse worse so be very careful. Also steroids can mask other problems. So that us the main reason he doesn't want u to take them. I've had ms since I was 22 to 23 yrs old but was misdiagnosed until I was 45 when they finally got the correct diagnosis. And I'm over 50 now so the normal aging process also has an effect on my eyes. I have now progressed, so that nothing goes back to normal. The bad thing with ms what damage is done is permanent it can't be reversed. Do see an eye doctor reading glasses do help and u can get those at the local pharmaceutical companies. Start with the lowest strength first and go up until u see better. Let me know how it goes. Sending love and hugs to u both.
Neil please stop apologising, you dont have to reply to every single person & I dont think people would expect that anyway, if you want to reply then just do one message for all, your putting stress on yourself worrying about other people so please dont do it, I have glasses for reading & glasses for TV the problem I had at the opticians was that my vision changes all the time so sometimes I cant wear them & then other times they work great,
Last night I had abit of a scare, I know were the damage is on my brain and every now & then I can feel tingling, last night I had a boiling hot tingling in my head which went down my face and was quite uncomfortable and I thought I was having a stroke, I didn't tell Dave I had it but after about 30mins it disappeared thank God but I have been getting some real banging headaches lately.
The amount of pain we put up with with all these symptoms is unbelievable, we act everyday like were ok just for other people's benefit, people ask how we are and that's nice but I always say I'm fine cos I dont wanna be telling them all this cos they just dont understand it, my friend got me some Beautiful flowers on Thursday & that cheered me up but she knows I'm not ok, shes an ex nurse, I've known her 14yrs now, shes more like a sister to me shes lovely, my other friends I love too but I dont tell them much about my Ms.
I'm stressed atm, my daughter is gonna be getting a house soon with Jack my grandson & her partner,
Kate has always lived with me, shes 30 now & Jack is 12, he has Autism & my daughter has a type of Autism although you cant tell really, well I'm gutted, haven't stopped crying and she hasn't even gone yet lol shes moving to Wales as that's were her partner is from and his job is there, it's quite far from Liverpool, I'm gonna miss them alot especially Jack, I've never lived on my own with Dave, we might kill each other lol 🤣😂🤣😂, house will be quiet although I still have 4 cats, I'm still missing izzy so much, I'm not over her yet so my M S symptoms are all over the place atm, I'm trying to stay positive and I'm sat here with headphones on again with no music 🤣😂🤣😂🤣😂🤣
Anyway take care both of you, it's always lovely to hear from you and Neil stop apologising to people lol
Luv Sue xxxxxx 😘😘
Neil & Theresa, guys I’m absolutely livid hearing how you’re being treated , yes I totally agree you’re being fobbed off big time . How dare the doctors just let you wait whilst it’s clear things are getting worse!! Please my advice is go to a&e and get seen by someone else. Ask them for steroids, if they refuse the IV steroids then ask for the small 10mg prednisone tablets which are the lower strength steroid tablets. You need to be seen by someone ASAP , like you quite rightly say how would they feel if they were experiencing scary symptoms, they’d be freaking out , & they wouldn’t be sitting being patient like you are . You’re entitled to a second opinion regarding the treatment of steroids.
Please don’t apologise about not responding, everyone understands. Praying for you , please go and get seen, Grace
Dumped. I know the feeling. Many with ME get NO support or treatment. It is hard to come to terms with how we with chronic conditions are treated. Hang in there mate ღ
Thanks Willo, you too🙏
My right eye is bad. It's like I have reverse tunnel vision. I can around me but not what I'm directly looking at. I also have the wierd viel thing. It is like looking through plastic or a blanket. I've also been getting alot of eye sores, styes the doc calls them. Good luck myy friend. Maybe ask the doc for a low dose prednisone . It may help you. Love to you and Theresa
Thank you Melinda 🙏 And I truly hope things improve with your vision too.
Hi Nanar and grandad xxx
Hello Gorgeous ❤️xx
Neil Bradley ❤️❤️
My regards to Cedric
Hi both,now you really are a worry.alot going on with you and no one giving you answers.I have noticed that if you present with a problem they not sure of ..then they either ignore you or pass buck or even worse..look at you as though you fibbing.I know cos it's happened to me.Keep bugging them Neil cos you can't be in limbo and suffering the way you are and no answers.kick ass neil.stay strong and keep them legs moving and never ever give up.It can't beat us .👊👊
Thank you Sharon🙏
It simply activates different muscle groups. Sorry for being superboring. Also stretching or yoga style moves. Whatever suits you the most.
Thanks Mike, not boring at all ! I do the Yoga stretching exercises (well some) in my daily routine. Having said that my routine has been out the window today because I’ve just felt too weak to do anything. Ho hum.
It is very difficult to try reading when the eye issues. I recommend putting an eye patch on when you try to read a screen.
Thanks for that Jared. 🙏
@@NeilBradleyMS Yes an eye patch. Jared offers good advice. Amazon sells them, but you might look like a pirate. :)
Thanks for that John 😲
I wonder why they dont recommend steroids when some sort of inflammation causes acute symptoms. although i suspect it is difficult for someone to understand the dominate stuff we face all the time verse a new little symptoms and what impact they cause.
They won’t give me steroids until they have reaffirmed my diagnosis. For that I’ve got to wait to see this Professor, (2nd opinion) which could be several more weeks. In the meantime I suffer. It’s not right.
I have a potential solution for lower body pain/movement... VIBRATING PLATE. I've used mine for the past 4 months. It does have holders each side for stability. Hope this can be of help
That’s an interesting one Mike. How do you feel it helps you? I suppose it gives the muscles a work out without actually moving they much.
Hi Neil and Teresa. I'm so sorry that things are not good right now for you. I have had pain over my eyes with visual impairments too. Usually accompanying vertigo and a awful Migraine. I usually get violently sick to my stomach too. I do have MS they checked my spinal fluids and it came up positive but I was active with symptoms so I wonder if you are not having an active attack if it changes your spinal fluids is that possible. I'm in the US and I wonder if it makes a difference with your medical treatment. I don't know. All I know is my attack were pretty violent 1st my whole right side numb couldn't walk and moving to my left side then 5 infusions of steroids which I recovered most I lost strength is all. Then 2 or 3 weeks later I had another severe vertigo attack no balance hospitalized 1 week in local hospital then transferred to Rochester research hospital and so many tests including a spinal tap then recieved 3 more steroid infusion before I left with diagnosis of MS and by September was put on Ocrevus infusions every six months. I've been on it 2 years and my last MRI had no new lesions. I am very lucky but it was very scary. within 3 months of my onset I was on Ocrevus infusions. I got back most everything but I still has exasperation of my previous symptoms. I can walk but running is out of the question. I'm just grateful I can walk. I didn't have a warning I mean I had Migraines all my life but so do a lot of people you know? I jokingly say that my MS is angry from being ignored for so may years. I never had any numbness or anything weird. I know with your with your eye issue you will be slow to reply that is understandable ok? I was told I was advanced that's way they put my on they strongest stuff they had available. From some of your symptoms it doesn't make sense not to be MS but maybe I'm wrong. You and your wife are such sweet people I would hope for something different that could be reversed you know? I'm hoping if you do find you have it you can get on Ocrevus infusions because it has human DNA that helps rebuild the damage. It's called remodeling and I had 1 big lesion on my spine and 4 lesions 1st time then 5 2nd time. They were light up bright and not small but sense being on the Ocrevus it has repaired the damage. Like I said I'm am very lucky. You guys are so sweet I want the best for you. I hope this is not too much but I feel strongly about good people should get the best treatments and you need a chance for a better life. I'm rambling now. So peace my friend. I wish you the very best. 😇😇🤗😊
Thank you for writing such a lovely message, it was really fascinating to read about your experience. 🙏
@@NeilBradleyMS You both are very welcome. I wish the very best for you my friend. I want the best care for you. You know? I've seen how you both have suffered and I want better for your lives. A better qaulity of life because it's important. I hope you are feeling better soon my friend. Take care both of you and good luck with the new Drs I hope they give you answers and help you find something that helps you my friend. You are in my thoughts and my prayers ok? Peace be with both of you. God bless.😇😇🤗🤔😁
I understand and thank you. Blessings to you too my friend 🙏
@@NeilBradleyMS I wish you well my friend. I hope you are doing better. You are very welcome I don't know if my experiences will help you or not. I want the best for both of you so hopefully something good will come from it. I don't really share except with your family. I watched your vids after getting diagnosis and I relate to you and your family more than any other videos. I think it's because you are going through so much but you keep a positive attitude towards everything and that's how I feel myself. I don't know I do understand getting upset and everyone has there way of dealing however I'm just grateful for having what I have. No one has a guarantee of tomorrow but for MS people it's more than the average person is all. Does that make sense? I could be angry sad but to what end? It won't change my situation. So I live everyday one day at a time but just keep going which is what I admire about you. You suffer and as do I but it's not everything we are. I hope that makes sense to you. I shared with you because of who you are my friend. Anyways I wish the best for both of you and I hope you get answers finally. Take care. God bless. 🤗🤗😇😇
Thank you so much 🙏 And yes it makes complete sense. Teresa and I are very humbled that you are able to relate to us and our channel, and that you share your experience with this horrible condition. Thank you again and blessings to you.
That is really unfair your consultant and nurse treating you like that. I really feel for you and hope your MS nurse comes back with a more helpful response. Don't worry about always replying back to comments, those of us with MS completely understand. and hope you can rest in aiding to get better.
Thank you🙏
Glasses would not help...sorry you are having a rough time...
That is my thought also Michelle. Thank you🙏