LOOKING BACK: Day 8 after steroids, COMPARING TO LAST YEAR | Worrying Visual Disturbances.

This is footage I took on Day 8 after I've had IV Steroids (Methylprednisolone / solumedrol). I decided it would be good to compare my recovery to video footage I took at almost the same time last year.
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👀 WATCH NEXT 👀
▶︎ My VERY FIRST Symptoms - • Multiple Sclerosis - M...
▶︎ My MULTIPLE SCLEROSIS Diagnosis in 2013 - • Multiple Sclerosis - T...
▶︎ The VERDICT, MS or NMOSD - • The Letter | The Verdi...
▶︎ My SHOCKING Consultant Visit - • NEIL'S SHOCKING CONSUL...
▶︎ This is what happened to me after IV STEROIDS - • WHAT HAPPENS WHEN YOU ...
▶︎ BEFORE and AFTER IV Steroids - • CHRONIC ILLNESS DAY IN...
▶︎ Never thought I'd be WALKING like this again!! - • NEVER THOUGHT I’D BE W...
🤒 CURRENT SYMPTOMS 🤒
Numbness, Burning, Tingling, Humming, Buzzing, Squeezing, Skin Sensitivity, Altered Sensation, Balance problems, Chest Pain, Muscle Weakness, Stiff Lower Back, Stiff legs, Stiff knees, Blurred Vision, Anxiety, Depression
👣MOBILITY ISSUES👣
Muscle Weakness, Spasticity, Clonus, Abnormal Gait, Tremors, Walking difficulties, Falling.
😷DIAGNOSIS HISTORY😷
▶︎ Transverse Myelitis (2008)
▶︎ Multiple Sclerosis (2013)
▶︎ Optic Neuritis (2019)
▶︎ Neuromyelitis Optica (spectrum disorder) NMOSD (2019)
💊FREQUENT MEDICATION💊
▶︎ Methylprednisolone (IV)
▶︎ Prednisolone (oral)
▶︎ Azathioprine (oral)
💉PROCEDURES💉
▶︎ Multiple MRI Scans
▶︎ Evoked Potentials (2013)
▶︎ Lumbar Puncture - Spinal Tap (Feb 2019)
----- Links to Social Media -----
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----- Playlists you might be interested in -----
▶︎ Tree & Neil's VLOG's - • Chronic Illness VLOG's
▶︎ My Life With Multiple Sclerosis - • (MS) My Life with Mult...
▶︎ Relapses, Steroid Treatment & The Effects - • (MS) Relapses, Steroid...
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▶︎ Molly's VLOG - • Molly's Vlog
▶︎ Birds and Animals - • Birds and Animals
-------------- Music Credits --------------
Artist: Pipe Choir (P C III)
Title: Reach Out Return (to Me)
Album: Ad Astra, Vol. 3
License: CC-BY
Link: • Pipe Choir (P C III) -...
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[@paololungaro5004]

It saddens me to see you struggle Neil. You can see compared to last year the frustration and exhaustion on your face. I pray after 14 days you’ll start to feel better 🙏🏼

[@NeilBradleyMS]

Hey there Paolo, and thank you for your message. its much appreciated! I've not long had three very painful days with severe burning in my legs which has gotten me very down. But today, is a better day and I've also had reasonable sleep which really does make a difference. I hope all is well with yourself, and you're staying safe from this dreadful Covid. Take care my friend, and all the best for 2021. 🙏

[@kpskingdom]

I sympathise with you Neil on so many levels. I have PPMS and there is no affordable treatment that I can go on. They tried me on Baclofen and said that I would be fine taking it. They were wrong on so many levels as it made my symptoms 3 times worse. It is good to see that you are still behind the wheel (I had to stop driving last year as it took too much concentration to keep the car on the road) As far as your eyesight is concerned, I have a very strange symptom, I had an eye test this week which was recommended by my Neuro Physio to see if it was my eyes causing me to walk the way I do. I am pleased to say that my eyesight and eye health is perfect and it is my brain that is not communicating. My sight does go fuzzy from time to time and it sometimes switches from one eye to the other in a matter of half an hour. I can relate to your legs and the trouble you have walking. I use a cane at the moment to keep me upright. I also have good and bad days using my legs and feet, some days my legs feel like they are made of lead and I need to kick my legs forward to keep momentum Your channel is so important to fellow sufferers of this crappy disease, it gives people your perspective of your everyday troubles and triumphs. My channel on the other hand showcases the failures that I have in a funny way (that's how I deal with it) . As I say to my customers, I need to keep my eyes forward (no pun intended) and keep going for as long as I can, I also intend to do as the great Frank Sinatra once sang I Did It My Way. Have a great 2021 and keep up the great content! Lots of love from "Downunder"

[@NeilBradleyMS]

Hey There .. I'm sorry to hear you've had to give up driving, that's tough and very difficult to come to terms with. There was a time I got so bad that driving became too difficult and I recall having to abort journeys and go home.. simply because it was too painful (legs and back). I have no doubt in the years to come I'm going to have to give it up too, this will have a massive impact on me, I just know it. It's horrible feeling slowly having everything taken away isn't it. :( As you probably know, Baclofen is a muscle relaxer and it's meant to ease stiff muscles and reduce spasticity. The only problem is, and this is the case with a lot of drugs, if you've already got muscles (weakened) with reduced signals because of spinal course damage, all this is going to do is make you weaker and wobblier. This is exactly why I gave up Baclofen after only a few days, I basically turned into Spaghetti. I do take Clonazepam, 1 x 500 microgram tablet at night.. this does help with my stiff back muscles reducing the excruciating pain but if I take anymore than the one tablet, I struggle to even get up the stairs or even stand from the settee for that matter. So it's about striking that balance. The positive to this drug is it does help me sleep a bit better. Yes, I can also relate to the leg issue whereby you describe having to kick them forward. The way I've said this is whilst I'm "trying" to walk I can't seem to 'motion' my legs forward? I think we're talking about the same sort of thing here.. it's disconcerting isn't it. Thank you for your kind words about my channel, it's comments such as yours which inspire me to keep doing videos. In fact I've just been over to your channel and checked it out, and subbed! I see that your somewhat of a chef!! Do you also do video about your MS? All the best - Neil.

[@adrianbryant7342]

Sorry to see that things haven't worked out as usual its very depressing to find its not the usual outcome. I hope you'll come back and say its worked and you both had a great Christmas. Take care my friend 😉

[@NeilBradleyMS]

Hey Adrian, and thank you for this .. yes it is very depressing feeling quite excited knowing I'm going to get a treatment that normally works really well, and then it doesn't. Very deflating indeed. Today is a better day, mobility is still poor but not quite in so much pain as the previous three days or so. I hope this message finds you feeling as well as can be Adrian, and hopefully you too have had a nice Christmas. Happy new year to you friend. Take care - Neil & Teresa 🤗

[@TealStarSusan]

Hiya! 2am here and still not asleep. I’m hoping you are feeling a bit brighter and that your IV steroids are kicking in. Much love to you both 😷⭐️💖⭐️😷

[@NeilBradleyMS]

Hi Susan, I'm guessing your weren't having such a good night then as you were still awake at 2am. I'm up and down all night to be honest, as a rule I'm just happy for it to be morning again. Much love - Neil & Tree.

[@j.svensson7652]

Your first symptoms showed up the same time mine did. My feet began buzzing in 2007. My first fall was in 2007 (separation with a child too). I think if they'd pay closer attention to you and your health it would be better for you. Stay on them. Theresa you get on them if you have to. They need to pay better attention to you! I'm all pissed off for you now. Mama bear rising up! Hugs to you both. I hope you are feeling better now. I worry about you!!

[@NeilBradleyMS]

Thank you J .. it's interesting that your symptoms started in 2007 the same time as mine, and buzzing in the feet as well wow! Yes, it's unfortunate that I've not bounced back this time like I have before .. ho hum such is life. I suppose it doesn't mean to say it will be like this every time, well hopefully not. Sending hugs right back there to you 🤗 Take care.

[@j.svensson7652]

@@NeilBradleyMS When was your last MRI? I am diagnosed with MS but my lesions (as far as I've been told) are all in my spine. You probably need to be scanned to see what is going on there. But.. heh... I'm no doctor... as Monty Python says and now for something entirely different. Happy New Year guys!

[@NeilBradleyMS]

Hi J .. I was last MRI scanned in Sep 2019 (I think) full brain and spine with contrast and I got the all clear. Happy New Year.

[@j.svensson7652]

@@NeilBradleyMS I'm glad to hear it. I'm supposed to have them every year. UGH! Happy New Year guys!

[@bevmagee2141]

Hi Neil& Teresa Looking back at your progression with you.its up and down for still. But like Teresa said" Don't lose sight! 🙏 Crossed Hope it's a better new yr for you take care guysall the best🥰

[@NeilBradleyMS]

Hi Bev, thank you for your message. Yes, since having the Steroids this time I've been fluctuating quite a lot, up and down as you say. I'm not too bad, but I've been better and I've not bounced back this time as I have done in the past. All the best to you also for 2021, and yes lets hope it's better than last year. Neil & Teresa. x

[@leewaken5059]

Well................SHIT! Interesting, the look back of your previous videos.(which I have all viewed before) I am still hopeful, 2021 is nearing. Take care guys.

[@NeilBradleyMS]

Hi Lee, and yes indeed! Definitely not feeling it this time .. ho hum. I hope you had a good Christmas, all the best for the new year. You take care.

[@knotyeoldecrochet]

It is wonderful that you have been doing these vlogs because yes, it is a video diary of things relating to symptoms, treatments, highs & lows, but you've never given up! You've always told it to go get knotted & you keep trying! Bless you! 💖 Have you looked at what meds you were on last time you had the IV? Maybe it is the Pred tablets that are stopping the IV from working as efficiently as in the past? With yoir heart rate that high I would be really stern-ish with your Team of Drs, etc as it's affecting your heart too greatly. I'm reading a book at the moment called: The Body Knows by Gabor Mate. Omg right at the beginning he talks about MS & said there's a suspected correlation between a person going through a traumatic event such as marriage breakdown & then divorce, and then getting MS! When you spoke about that on ypur video I was amazed as I had just read about that theory based on data collected. The book is about stress (mostly everyday stressors), but it may be worth a read! You need to listen to Mrs Bradley, she's right you know, about just waiting it out longer to see how the IV kicks in, etc. She said it so tenderly & in a caring way you can totally see how much she loves you & also how much it impacts her also as she's with you each day & night seeing what you go through! You met an Angel in that one, but I'm sure you don't need me to tell you that! Lol Keep your chin up, it's not the end for your journey yet! You're changing lives in more ways than one right across this big World of ours & your video updates are a huge part of peoples lives! Take care, love to you & Teresa! 😘💖😘💖

[@NeilBradleyMS]

Hi Susannah, and thank you. That's a very good point, the last time I had IV Steroids I wasn't on any of the Pred tablets, and I feel strongly that they are responsible for a lot of the side effects I'm now experiencing. My heart rate does slow down to it's normal resting rate of about 50 - 60 beats, but it does become very elevated simply by walking to the kitchen and back. Walking however does take a great deal of energy for me now, it even makes me out of breath .. crazy. With regard to your book, yes I've also read or come across it in my research that a traumatic event can activate a dormant disease. I truly believe the incredible stress and anxiety I endured with my family break up in 2007 triggered my illness. I was basically traded in for a younger model, but it was me that had to move out of the family home. I lost everything!! EVERYTHING!! I couldn't even give my beautiful daughters a kiss goodnight and a cuddle, or tuck them in and read them a story which I'd been doing for years. At the time they were 5 and 7 years old. I can't begin to explain how this completely and utterly broke me!! I can say now, Teresa saved me.. I believe your correct, she was the Angel that was sent to save me. I Can't believe I've got a tear in my eye whilst writing this. Looking back to that time, it was just trauma in a big way. I'm so pleased you think our video updates are doing good, it's words like yours which inspire me to keep doing them. Thank you so much. Much love to you - Neil & Tree xx 💞🤗🙏

[@meaghancool6868]

I hope you both are doing as well as can be expected! Just checking in on you 😁

[@NeilBradleyMS]

Hi Meaghan, we’re doing ok’ish .. I’m not so great in all honesty, just taking every day as it comes. Thanks for the check in, we have just in fact recorded a video, but I’ve yet to edit it up and publish. So you might like to look for that in the next few days. I hope you are doing well, and trust you are staying safe. 🙏

[@paololungaro5004]

Miss you guys. Hope all is well. Sending love and prayers your way 🙏🏼❤️🙏🏼❤️🙏🏼❤️

[@NeilBradleyMS]

Hi Paolo, not too bad thank you.. ups and downs. Thank you so much for checking in, appreciate it. Much love and prayers to you also. 🙏💖

[@paololungaro5004]

@@NeilBradleyMS thank you. So far 2021 has been “ok”. I suffer from debilitating anxiety and as weird as it sounds, I watch a lot of your older videos to put me to sleep and calm down because even amongst your suffering I find extreme calmness in your voice. I know strange , but the world has been just as strange so I just go with it. Take care and I look forward to your next update

[@NeilBradleyMS]

@@paololungaro5004 Thanks Paolo, that’s kind of you. I’m pleased that my videos are helping you😊 I’m sorry to hear you suffer with Anxiety, I do too terribly. This has become more apparent due to my illness over the last four to five years or so. Know that I really do understand how debilitating it is. I actually prefer to stay home these days, I feel safer here.

[@paololungaro5004]

@@NeilBradleyMS I’m in the same boat Neil. The virus has shaken my partner up to the core where she has me taking multiple showers because of maybe coming in contact with Covid. I’m currently standing in the kitchen for 45 minutes while she cleans what she needs before I can move. It’s absolutely awful. I’m in an absolute prison. She makes a example out of me and verbally abuses me if I forget or go against what she has set up for us to keep us safe. Will literally say it’s all my fault now that she has to do ABC. Puts all the blame on me. Makes me feel awful.

[@NeilBradleyMS]

Hey Paolo .. reading your message I'm kind of lost for words, on one hand it's very unfair how your partner is taking her anxiety out on you, I hope she's able to realise the effect this is having on you both. But also, I feel for her because of how Covid is having such a negative effect on her mental health. To feel like you're in a prison is just terrible, something has got to change.. it's not your fault, I'm sure your doing the best you can. So sorry my friend, I can only imagine how terrible this makes you feel. I hope things improve for you.

[@bodhimarkprinz8001]

Yes Neil it does take a little time after Solu-Medrol to get the body rejuvenated again. But as I have seen or felt it is like a roller coaster ride. Some days good and others bad. My eye sight is going to some days so so and then can't see out of the right eye. I still ride a motorcycle but it looks like I will have to give it up. I am really worried because I don't want to lose that function since I would have to be so dependent on others to help me function through the day. I have a specialist looking into my eyesight issues and hopefully can find a solution. Stay the course Neil and say hi to Theresa for me. Talk soon.

[@NeilBradleyMS]

Hi Bodhi, I'm sorry to hear about your eye sight also .. on the whole mine isn't too bad I can still see quite well but I have spells of it being very blurry, especially in the evenings. I hope you manage to get some resolve with your vision, it would be such a terrible shame to have to give up your motor bike. Unfortunately, it doesn't look like the Solu-Medrol has done it's magic this time for me. During the time of actually having the medication I was feeling a bit better and stronger, but since then I've gone back down hill. So I'm feeling pretty fedup at the moment with lots of pain and disability. I hope you had a good Christmas, and all the best for the new year - Neil & Teresa.

[@gittekronb9824]

I love you guys so much ..you give me hope with every video ..thank you so much xx

[@NeilBradleyMS]

Thank you Gitte, that means so much to both Teresa and I. I’ve actually just re-watched this video as a result of your comment, and I found the different time lines very interesting. I’m so glad I put this in. I hope your feeling as well as can be?

[@lw5682]

Here's a virtual hug sent over from Michigan for both of you!! 🙂🙂

[@NeilBradleyMS]

Well thank you very much for that LW .. here's one right back 🤗

[@willowithywindle]

Hang in there. Keeping these vlogs has proved to be very productive hasn't it for you both and for us too. And we got to see dear Molly again:) Coming off those drugs sounds like a good plan. Then you will have a real knowledge of your natural baseline now. I can sympathize with your concern about your sight Neil. That would be very scary to experience and I am so pleased it resolved again. Love to Teresa.💕

[@NeilBradleyMS]

Thanks Willow, I'm trying .. and you spotted Molly!! :) Yes, that footage was taken from 2017 when we still had her, I thought it was nice to include that footage again. A lot of my more recent subscribers don't know about her, unless they look back on older videos. Yes I will be so pleased once I can come off this dreadful Prednisolone, but I've got a feeling they'll keep me on it now for a while or a least until I can have the Rituximab 2nd line treatment, so finger crossed. I hope you and Rod had a lovely Christmas. Both Teresa and I wish you all the very best for the new year, lets hope it's much better than 2020. 🤗💞

[@Tom1972able]

my apologies should not of sent an idea in that fashion. Your following is unbelievable. was just thinking Fampyra might help. even though it is a ms symptom med.

[@NeilBradleyMS]

Hi Tom, as I say in previous comment no apologies necessary. Myself and I'm sure others appreciate you sharing your thoughts.

[@caroleventhem3261]

Hi guys! Really hoping you are feeling better now. Watching your early videos helped me no end when I was trying to work out what was happening to me. Keeping you both in my prayers 😘

[@NeilBradleyMS]

Hello Carole, great to hear from you! I'm super pleased our videos helped you towards figuring out what was happening to you. Hopefully you're coping with your illness and it's not distressing you too much. Blessings to you 🤗

[@elainesmusic473]

Gosh, you are being so brave, Neil!! I imagine that all of this lumped together has become almost too much to bear, and that's the reality of chronic disease. I just sit and weep a lot over the idea that nothing to really DO about this MS thing that makes a ton of sense, or even truly helps. I am usually quite upbeat, and HOPE-ful, and yet some days are just really hard. I feel you. And as for Teresa's comment about your heart, mine does the EXACT same thing. My heart pounds so. Anyway, hang in here with us, and together as helpmates to each other. You are blessed to have each other!! I realize you know that. Thinking of you both often, and still enjoy ALL of your videos and have for quite a while now.

[@NeilBradleyMS]

Hi Elaine, and thank you for your lovely message .. I'm so pleased to hear you enjoy our videos, I know I have a fair few subscribers now but your name always stands out, it's always nice to hear from you. I'm terribly sorry to hear however hear how upset this dreadful disease makes you though, I do however understand.. and it's the same for me. Sometimes when the pain and symptoms (and not being able to sleep) are just so bad I just want it all to end. Sending much love and hugs. 🤗

[@elainesmusic473]

@@NeilBradleyMS Ya, the "end it all" thing gets pretty deep inside of me, too. But it's not always there, as you say. We swing with the ups and downs. I love you both.

[@kathycollett8774]

Thank you for the update. Continuing to pray for you both. I hope you will be feeling better soon. Many blessings to you. 🤗

[@NeilBradleyMS]

Hi Kathy, and thank you so much for your kind words. Blessings to you also 🤗

[@dean200993]

I'm really sorry the infusion isn't working as quickly as it did last time. I'm sorry for both you Neil and Teresa, becsuse you're both lovely people, who deserve every happiness. I hope there's some improvement soon.

[@NeilBradleyMS]

Thank you so much Dean, and it's lovely to hear from you. I hope you are keeping well, and staying safe my friend. All the best for 2021. 🤗

[@michellemountier5409]

I get that totally. When my backs sore my legs are crap. I had steriods for 5 days once.did nout but put me in bed for 2 weeks. I always said I've never have them again but when my ON kicks in I'll have to. Thats is so frustrating not being able to walk normal speed when your mind wants too. I am so grateful for your support and journey and love watching you both Chin up kiddo x

[@NeilBradleyMS]

Hey Michelle, nice to hear from you .. sorry to hear the steroid never had a positive effect for you. And yes, I really can't explain it when my back pain is worse my legs are terribly. For example, I'm currently sitting at my computer desk typing this message to you, if I were to reach for the light switch it will stretch my back and it will really hurt, this in turn will send my legs crazy!! The question is why? I really can't explain it. Take care - Neil . x

[@sheridanrose9880]

Keep staying strong minded!

[@NeilBradleyMS]

Thank you so much Sheridan, and the same goes for you too. Wishing you the best for 2021 🤗💞

[@sryburn641]

Hey. I hope y’all are doing well. Smile. God loves you.

[@NeilBradleyMS]

Hey there, and thank you so much.

[@jaynebuck5163]

Keep hope, we have to otherwise this disease we have gets in our heads. When it gets in our heads it creates stress, and that causes symptoms. I had to laugh at your MS nurse response, my clinic is very “non” in my battle. My primary Dr will say a symptom is MS my MS Dr says it’s not MS. In my prayers

[@NeilBradleyMS]

Hi Jayne, yes the "hmmm" basically means I'm not convinced and really they don't know what else to do. But I suppose after just having the IV Steroids they've done everything they can so far. I haven't bounced back like I normally do though unfortunately. I can understand your frustration with the different Dr's saying it's this and then another saying it's that, kind of makes you loose faith in them doesn't it. Thanks for the message Jayne 🤗

[@brucevecranges6438]

@@NeilBradleyMS thank you again sir and God bless you

[@murphymcsmooshface7004]

Hi Neil and Tree, I’ve caught up on all the videos and wow!! Neil, my symptoms are exactly like yours now. The small of my back seems to be the catalyst of everything. My standing , my gait, my energy is all dependent on my back muscles and the pain from. I’m taking aspirin and codeine for the pain which lasts for about two hours. Still got a dead left side and left drop foot & blown Achilles on right foot. Ouch now for a full year. The Parkinson’s meds do nothing. My vision is weird. The burnt, gritty eyes are driving me crazy. I’ve just got to close them. I’m poised to just throw in the towel and just live the best way I can away from drs. Ggrrrrr. 💖💖 Love from Australia, Andrea (watch your heart rate and rhythm with steroids mate - I’ve got AFib & steroids give it hell)

[@NeilBradleyMS]

Hi Andrea, it's really good to hear from you .. WOW I find it fascinating how similar our symptoms are, the fact that the lower back seems to be the catalyst, I also take Codeine but it hardly does anything for the pain. I also have Oramorph, which does help but I have to be careful as it can cause severe constipation, and I'm not into that! For me when my back is painful and weak, my legs seems to be much worse a well. The muscles that run either side of the spinal cord which help us stand are like concrete for me (too much tone due to the illness) and prevent me from moving properly and cause so much pain!! Definitely a connection? But when I mention this to the Dr's they don't seem to acknowledge it, or in fact agree with me. I'm very analytical, and I observe myself very carefully.. I'm aware of the very slightest change, so I feel I really do know what I'm talking about. Sending you much love and hugs right back 🤗💞

[@michorote106]

Neil God bless hoping we in new year you be better

[@NeilBradleyMS]

Bless you Dee, yes indeed .. lets hope this new year brings us better health.

[@michorote106]

Hi Neil you afraid cause your eye sight how u walking?

[@michorote106]

I worry about you both of you cause I could imagine how teresa worrying about u

[@michorote106]

She have take care of here self too cause here sugar, you have any children neil? Family members in the state

[@NeilBradleyMS]

Hi Dee, my walking has been better to be honest.

[@alitablackangell5770]

Love the updates!!!

[@NeilBradleyMS]

Thank you so much Lita, I'm so happy to hear you're enjoing the videos.

[@mikemoon8037]

You have to stop driving. I'm sorry to inform you of this. If you drive into somebody or something. You have to deal with the consequences. I Can say this to you as I have had to let go of this myself. Bad vision? Time to change!!

[@NeilBradleyMS]

Hey there Mike, I truly appreciate your concern about my driving, thank you for this. It wasn't so long ago that my mobility was so poor I felt unsafe to drive, so I stopped for a while.. but then (after steroid treatment) I improved, so I started to drive once again. Driving isn't really an enjoyable thing anymore for me either, it's more of a chore because usually now it's a painful experience. I actually purchased a DashCam to record every journey that I do, because I thought to myself if something did happen and it truly wasn't my fault, I could quite easily be blamed because of my condition where as in fact it might not be my fault. So I think a DashCam is an essential tool for anybody these days. Rest assured, I am a very sensible person and I would never consider getting behind the wheel if I felt my vision was too bad to drive. I actually test myself by successfully reading number plates at a good distance. As a rule my vision seems to do its "weird thing" in the evenings, and by morning and for the most part during the day it's still very good. I'm terribly sorry to hear you've had to give up driving yourself, it's a bitter pill swallow for sure. Take care - Neil.

[@TealStarSusan]

Oh Neil! Thank you goodness for the videos because yes, they are giving you a clearer view of exactly what went on when! We are sorry you weren’t feeling good by the 15th (David’s birthday ;) ) and are desperate to know how Christmas went and how you are now! A thought struck me so....When did your eye problems start, are the events all similar, how long does the event last? I’m only asking as I know you believe it’s your steroid pills, and you have been diagnosed with related eye problems but...is it possible that sometimes it is perhaps a migraine attack? They aren’t always painful but can cause some really odd effects similar to what you described. Some go totally blind in one or both eyes , some go blurry like you, some even get a paralysis like an old friend of mine who was only in her 20s when it started... and every time she got migraines..she was partly down one side! I hate migraines! We really hope you ARE feeling better, and no more eye problems by now. We can’t wait for your new video! Much love to you both. (I’m the same as usual so hope to ring the neurosurgeon for an appointment. ). ⭐️⭐️⭐️❣️❤️❣️⭐️⭐️⭐️

[@NeilBradleyMS]

Hi Susan, and thank you for your message. The news isn't good I'm afraid, I've not bounced back like I usually do when I have the IV Steroid treatment. My mobility is terrible and the pain levels are up! I don't think I got any sleep last night, saw pretty much every hour thanks to the burning in my legs and pain in my lower back. Feeling pretty sorry for myself to be honest. I'm pretty sure the visual disturbances are not migraines.. it seems pretty random to be honest, sometimes the blurred vision can come on in the day time (like now), but as a rule it's night time whilst watching TV I notice it come on the most. First thing in the morning it's usually pretty good. This all started since taking the meds back in Nov 2019, prior to that, even after an IV Steroid infusion my vison has been crystal clear. I hope you get that appointment with your Neuro sooner rather than later. Take care 🤗

[@TealStarSusan]

@@NeilBradleyMS I’m sorry to hear that your spring back has not happened ! I pray that the eye problems stop, or can be stopped soon. It’s awful when you can’t see properly like that. You must worry about driving too. I can’t remember, does Tree drive as well? I feel lousy today..but have to go out to get Meds from the pharmacy. And some food as no one is being allowed out of their councils from midnight tonight until 5 am on the 4th January! And during this time we are under curfew from 1 pm until 5 am every day from tomorrow until 4th, except for urgent medical reasons !! Much love to you both. Sending you virtual Portuguese double hugs and kisses, for both of you, and prayers for a better New Year! ⭐️⭐️💖💖💖⭐️⭐️

[@chriseisenbraun5541]

Sorry to hear this ,as I told you before steroids do nothing for me nor does the ocrevus infusion I'm on ,this disease sucks the life out of you sorry Neil

[@NeilBradleyMS]

Hi Chris, yes it really does! As a rule over the year when I've had the steroid infusions, I've bounced back quite well, but not this time unfortunately. Feeling pretty fedup at the moment with worsened mobility, pain is up and not sleeping either.

[@michorote106]

It hurts me see you not doing good next Friday next week the 13 i believe I do ocrevus infusion

[@NeilBradleyMS]

Thanks Dee, no I'm afraid I've not bounced back like I usually do.. and unfortunately I'm still not doing great. Good luck with your Ocrevus infusion, I hope it goes well for you.

[@knotyeoldecrochet]

I'm sure you've probably already been tested for this, but on the off-chance you haven't, Ankylosing spondilitis. My cousin has it. I didn't know it can also affect eyes

[@NeilBradleyMS]

Hi Susannah, I've just looked up the symptoms of "Ankylosing spondilitis" as I wasn't sure what it was. I'm pretty sure they would have ruled it out though with the many MRI scan I've done. Thanks for this, hope you're doing well.

[@billielewis5562]

Well, I don’t know really what to say. I’m sorry it didn’t go as expected, tbh I was in shock to that it didn’t work like last time. I have a question, what is your diagnosis because I am confused? Oh and the ms nurse ‘monitor it’ I can relate, every month when they ask have you any new or worsening symptoms I just say no because it goes absolutely NOWHERE. I’m booked in sometime in the new year with my incontinence nurse to be shown how to evacuate my bowels manually because the ms is causing the problem. Long story short catheters last year and now this. So two weeks ago when I had my infusion I just didn’t bother saying only no to the questions. Just feels like, your on tysabri that’s the best it gets. It’s not the case, yes it’s fantastic at stopping relapses but it’s not stopping the progression. I accept that but I can’t accept the poor symptom management help that I don’t get. Sorry Neil, I’m ranting. Anyway, you two take care, especially with this COVID. Try and keep your spirits up, I know it’s harder said than done. Sending positively and strength your way. Del

[@NeilBradleyMS]

Hi Del :) nice to hear from you and thanks for your message. My diagnosis is complicated to say the least, long story short in 2013 I was diagnosed with MS, but over the last 18 months it is no longer secure. They now feel I've got a different Auto-Immune disease called Neuromyelitis Optica (NMO), I suppose it can be looked at as a severe form of MS which effects spinal cord mainly hence lower body mobility issues, and also the optic nerves. So I'm kind of in this grey area, have been for a while whilst they figure it all out. I'll keep you posted on that one. Moving on and reading the rest of your message, gosh Adele both Teresa and I are so terribly sorry your having to deal with these continence issues, this must be very distressing for you. Know that you're not alone.. I don't really talk about it on my channel but I too have similar issues, although I don't have to catheterise. The MS slows downs all the signals to our muscles (the bladder being a muscle) and of course the bowel muscles which move things along. I really struggle in this area also, so I do understand. My heart really does go out to you, it's really isn't fair having to deal with these horrible problems. I really do hope your appointment goes well and you're able to start managing this ok. Yes, the Tysabri will be keeping your immune system lowered and help preventing the attacks, but as you say it these drugs don't seem to stop the progression. It's scary when I look back over the years, 10 years ago I was as full power 100% and now I struggle to just get around the house. I worry about the future, which I'm sure you do as well. I know what you mean about the symptom management, the only drugs that seem to help me a bit is the IV Steroids (which didn't this time) and Clonazepam .. I also take Codeine (which doesn't seem to help) but Oramorph does for pain, but that is a much stronger pain killer. Please don't ever think your ranting, happy to chat with you any time you need a listening ear. I will indeed try and keep my spirits up, yes it's difficult but we have to try don't we. That goes for you as well Del, it's difficult to remain upbeat especially with what you've got to deal with, know that we're thinking of you and sending thoughts. Much love - Neil & Teresa 🤗💞🙏

[@hedgehogwildlifejunction9119]

I never had steroids even with Optical Neuritis. I am glad i didnt to be honest as i have heard others who have had the infusion and felt rough. dont give up hun i have been fighting since before 2000. i only found your channel by error. stay strong. I think i got your wifes name wrong on a post this morning i apologise its down to PPMS brain fart lol. xx CAN I just say last year we were not in a pandemic. your overal health will be different we have gone through a lot of stress and therefore the streoids may not work as well. x

[@hedgehogwildlifejunction9119]

dont over do it though. i was told by neurologist stop pushing myself as i ended up in hospital recently. with suspected stroke.

[@NeilBradleyMS]

Hey there, good to hear from you and thanks for coming back and posting a comment. I have a theory about the Steroids, and this tends to happen every time to me. I feel ok whilst actually having the infusion, but then in the days that follow, yes your right I always feel pretty rough afterwards, but I think this is due to coming down off them, almost withdrawal. Kind of have to go through that to try and get to the benefits of them. Unfortunately though this time I've not actually bounced back like I usually do.

[@NeilBradleyMS]

Gosh, that must have been really scary .. I decided early last year to stop pushing myself and put myself and my health (what's left of it) first. Best thing I ever did.

[@justMe-rd4sw]

I get the heart thing, at rest , thudding in chest, but don't take any meds and it's not anxiety( some drs Love to use that one.....alot 😩)

[@NeilBradleyMS]

I've only had the thudding in the chest since being on Prednisolone (tablet steroids every day) I have to take them to help suppress my immune system but there are so many side effects, I hate being on them!

[@NeilBradleyMS]

Hi there, I spotted a comment come through from you a few days ago .. came up on my notifications but as has recently been the case when I select it, the comment has vanished. The summary on the notification starts "glad you both have, I've got my first tomorrow". I'm guessing you're talking about the Covid vaccination. Thanks for the message, and sorry KZbin have removed it for reasons unknown. All the best.

[@justMe-rd4sw]

@@NeilBradleyMS yes,ve had my first jab the Fizer ( spell it differently maybe it will confuse the algorithm that keeps censoring my very non controversial comments 😂, tbh I can't remember what I put. All the best to you N&T xx

[@NeilBradleyMS]

Hey there, your message came through this time .. good to hear you've had your vaccination! I had mine back in Jan, and my wife had hers only a couple of weeks ago now. We both had the Astrazeneca, and we need to have a 2nd dose in a few weeks time. I hope all is well with you, I do recall you've not been feeling well so hopefully this message will find you feeling a bit better and more upbeat. Take care xx

[@ponynose]

The fact that you haven’t posted makes me anxious for you. I assume that the steroids haven’t been as effective as they have in the past.

[@NeilBradleyMS]

Hi There, you're right there .. I haven't bounced back like I usually do with the Steroid treatment and I've been feeling pretty rubbish to be honest. As for posting, well it just so happens that Teresa and I have, over the last few days put a video together and I'm hoping to publish it today if I get chance. It's just a bit of an update really, nothing too exciting. Thanks for the check-in, I hope all is well with yourself. Take care.

[@justMe-rd4sw]

Perhaps ask to see a neuro ophthalmologist? I've had and got big problems with my eyes ( again I'm still undiagnosed, I get repeated negative afterimages of everything I look at like a photo negative ( palinopsia its called) floaters increase and eyesight used to be brilliant too. ) have they done visual evoked potentials on your eyes , probably have? Hope you are both holding up ok have you both had covid-19 vaccine yet? I can't remember how did you get on & which one did you have ( if you did) best wishes 23rd Feb 2021 👍✌❤

[@NeilBradleyMS]

Good morning .. I'm sorry to hear you're having such difficulties with your eyes, those symptoms seem like they must be very hard to deal with. I hope you get to the bottom of it, and manage to get a diagnosis. Yep, done the Visual Evoked Potentials, video here: kzbin.info/www/bejne/a5Spoayqbd5gfqM I had my Covid Vaccination quite some time ago now as I'm Clinically Extremely Vulnerable having a suppressed immune system, so I get to jump the queue lol. My wife had hers last week, who also has underlying health issues. We both had the "AstraZeneca" vaccine. Both of us had a bit of an achy arm, not much really but for me I felt really tired for the next few days, so tired I could fall asleep standing up, well I suppose not much change there really ha ha.

[@brucevecranges6438]

Hi Neil I'm been experiencing weak legs for the last two weeks I also have ms and now I'm thinking could this be a relapse or is this the start of being in a wheelchair. Did you ever experience week legs then it got better or was it a slow decline. It's hard to come to terms knowing that I might never walk again. How do you stay positive. Thank you

[@NeilBradleyMS]

Hi Bruce, and thank you for your message. I've continually got weak legs, pretty much every muscle in both my legs are effected. Stiff muscles in my back are also play a big role in my poor mobility. The nerve signals (due to the damage in spinal cord) no longer deliver the correct 100% signals to my muscles, so they don't function properly and are weakened as a result. My ankles are stiff painful and weak, the muscles around my knees too, thighs, hip flexors, back muscles. I do understand about the fear of a wheel chair, in fact I've been there more than one occasion. There are videos on my channel going back 18 months or so ago whereby my wife was having to push me to appointments because I couldn't walk more than about 15+ feet. I also thought, is this the start of permanently being in a chair but for me it wasn't but I know at the time I was thinking this also, it's hard not too. I know it's easier said than done, but try and remain positive. It was given IV Steroid treatment which got me up and walking about again, and out of that chair .. and I will say I've not been in it since I'm pleased to say. If you have an onset of new symptoms, or old symptoms are returning or worsening then yes you could well be having a relapse. If you feel this is the case, contact your MS Nurse team or hospital ASAP because if you are having an attack it's important to hit it hard with steroids and reduce that inflammation quickly before too much long term and permanent damage could result. I don't want to scare you with this information, but if there is any doubt in your mind contact your Dr. We have to think longer term here. I wish you well my friend, please feel free to return anytime if you need to talk. Take care.

[@brucevecranges6438]

@@NeilBradleyMS thank you for your response it's been four weeks now since I have struggled walking and scares me that I might have to go on steroids cause the side effects. Every morning I wake up with a burning sensation in my legs and hip. This make me feel like I need to always go to the toilet. I admire your strength and have great respect for you and your wife. I keep in touch with you if I have any questions. Thank you greatly. One question how long did your relapse last

[@NeilBradleyMS]

Hi Bruce, there’s no set time period for relapses unfortunately. I’ve had many, and I’ve always contacted my MS team who give me steroids. I can appreciate your worries and concerns about the steroids, it was the same for me. But there comes a time when you have to consider quality of life, and the steroids gave me that back (no more wheelchair and much improved mobility, this was in 2019 though). The side effects of the steroids are usually short lived and aren’t too bad anyway.

[@brucevecranges6438]

@@NeilBradleyMS so once you go on steroids do you get better and stay that way or do you have to keep on going back

[@NeilBradleyMS]

Hi Bruce, as a rule the Steroids do make me better and quite quickly as well. There is a period of time (a few weeks) where I start improving, I will then plateau for a few months and then start going down hill again (documented in past videos). This is the trend with me. However, there have been a few occasions I've not responded in the same way to the steroid treatment, the latest being one of them (most recent videos). So, yes I do have to keep going back but I feel it's important because looking long term I feel it keeping my mobility going a little bit longer and helping reduce damage to effected areas in my body. Everybody however is different and will obviously respond differently. A lot of people on my channel are like me and respond really well to them, but others have come back and said no improvement. I'd just like to make it clear, the steroid treatment I'm talking about is in Infusion (canular in the arm) delivered by IV (into the blood stream) over three consecutive days (as an outpatient), rather than taking tablets. I do have the option for tablets but I've always felt they haven't worked as well so never bother with them, always have the infusion.

[@amandaherman]

Hello Neil and Teresa, Did you think about possibly going to an eye doctor to have your eyes examned? With your heart rate going up when you are just sitting so you Check your blood pressure if you have a blood pressure cuff ? If you do have one and Check your blood pressure to See has it been. In the normal range? If your blood pressure is high you might have high blood pressure If you don't which I hope you don't, but could that maybe why your heart rate goes up? Or could it just you that you have Anxiety possibly? I am on medication for Anxiety and it helps me a great Deal. If you think it's Anxiety if you are Not in medication for that Talk to your MS Nurse about your symptoms about your heart rate when you are Not doing anything that would jump your heart rate up ask your MS Nurse if it could be Anxiety if the Nurse or your Doctors could possibly put you on medication for it to help slow your heart rate down I mean I am Not a doctor but just a though. Or is your heart rate going up from the IV treatments that you just started getting or for some reason just it From of your oral medication that you have been taking? So the treatment has not lasted long that it was helping you at all? Die your MS Nurse give you a possibly Time frame on how long the treatment would possibly Work? I understand if you were told how long it could treat you, I know it's probably Not possibly that you could be told Because everyone is different. I hope your Issues get better day by day Just take one day at a Time. Just keep positive. You both take care - Amanda

[@NeilBradleyMS]

Hi Amanda, I've had my eyes checked quite regularly by the hospital on my recent visits and it's ok. But it all depends on whether I'm having a blurry episode which quite often I'm not. Yep, got my own blood pressure monitor, take it regularly and it's always pretty spot on. As a rule if I'm really not feeling well I take my blood sugar (Teresa is diabetic) and Blood pressure at the same time to try and figure out what's going on, usually it's always ok though. So who knows. I've only started having the increased heart since Nov last year when they put me on Prednisolone (steroids tablets) .. I'm slowly being weened off them because they've been causing me all kinds of horrible side effects. Prior to this, I've not suffered any heart related issues. I hope you had a good Christmas, and we wish you all the best for the new year.

[@Tom1972able]

sorry I should not have sent an idea about fampyra in the manner I did. I thought it might help. I will refrain from sending ideas in that fashion. Your following is beyond belief..... Fampyra is off label here. for the responders, it could improve walking, vision arms, heat intolerance. It is a MS symptom management drug and I believe could possibly be used off label for NMO. just an idea. but I forget you are obviously very much on top of the situation.

[@NeilBradleyMS]

Hello Tom, please no apologies necessary! I like the fact that subscribers share their thoughts publicly because then others can read them and decide for themselves whether or not they're interested in pursuing. I do in fact know about Fampyra, and I've also researched it too .. I also have spoken to people that have been on it, it looks to be a very good drug but only works in about one third of people. Unfortunately here in the UK Fampyra is not available on our National Health Service so we would have to fund the drug ourselves. I hope all is well with yourself Tom. Best to you - Neil.

[@peterjansen5571]

Hello Teresa and Neal, nice to hear from you. I often think about what I would do if I were you. I have ms but I am not as disabled as you are. Lots of problems anyway but my walking is ok. Did it ever crossed your mind that you are more suffering from side effects than from the actual disease? It's just a thought of me but can't you just leave all those medications for a while? I know that you don't want new relapses but how long is it since you had a relapse? I am on tecfidera since 1 year because my neurologist says I have rrms. To be honest I don't believe that at all. I have no relapses at all and my mri is exactly the same as 2014. I told my neurologist as soon I experience too much side effects I quit with tecfidera. I learned one thing and that is that doctors aren't perfect. In your case they are not even sure what your disease is after so much years. Back to the beginning of this message, what I would do if I were you. I would try how I would feel without al those chemicals. I would follow my gut feeling. You can always go back. You know your body best. The doctors spend a few minutes a year on your case so they don't. I wish you both all the best. Greetings from the Netherlands, Peter Btw I had IV steroids twice and for me it was awful. Anxiety severe depression and terrible cognitive problems like I couldn't think normal and blurred vision. After 6-8 weeks those problems went away. Only my depression took a lot longer and I had to go stationary in a depression clinic for 4 weeks. I am 200% sure that the steroids did that to me. I know that every person is different but I will never take them again.

[@NeilBradleyMS]

Hi Peter, I'm totally with you on that .. I hate medication and have never taken it until recent years. I wouldn't even take a pain pill for a headache. The Doctors don't force anything on me, but I got to the point whereby this disease I've got reduced my quality of life so much, I felt I'd got to do something! The only thing was medication, and the first thing they offered me back in 2013 was the IV Steroid infusion. After being wobbly with no balance and walking like I'd had ten pints too many for weeks on end, all of a sudden about ten days after the infusion I was like a new person! My balance returned, I no longer walked like I'd had ten pints, I felt my life coming back slowly! It really was amazing.. so you see this then inspired me quite significantly. I've always been very anxious about taking medication, and I still am to a great degree but I feel my choice is out of my control now. Pain, disability and lack of sleep absolutely wipes me out on a regular basis, even typing this message to you I've got terrible pain. I have actually tried to reduce my pain meds, and I still do because I don't like their side effects and how they make me feel, but the only problem is it's just like a double edged sword. The pain comes back worse! Eventually, it becomes so unbearable the "dark cloud" of depression starts to loom and that is when things start to become a bit dangerous if you know what I mean. I hope that makes sense my friend. I also hope you had a lovely Christmas, and I wish you a Happy New Year. Best - Neil.

[@peterjansen5571]

@@NeilBradleyMS hi Neal, I totally understand. Not much options left. I really hope you get some relief soon. Do you still have that scooter you bought last year? I know for myself that when I'm a dark place it really helps to go out. It doesn't help for my ms but it sure helps me to free my mind a bit. Sometimes I really don't want to go out but as soon I'm out I am happy I did. Always remember that you are not alone and there is always something positive in life. Have a wonderful new year. Positive vibes to the both of you. Your friend Peter.

[@NeilBradleyMS]

Hi Peter, yes I do still have the scooter bought last year.. it's in the garage but I've not used it in a long time. Never know though, so I'm hanging on to it. Yes, I agree with you.. going out and having a change of scenery really does help doesn't it. Thank you for your kind words Peter, all the best for 2021.

[@Tom1972able]

The car is my spot unless my wife lets me out for a walk on a path. I use the motion to keep the muscles fired. no motion no muscle tone. and need a chair post haste. Keep the faith. I am trying my own temperament with metformin. a type 2 diabetes drug. has shown remylination in mice. and I believe in pet re dishes with human cells. that is what we need. As before can relate to much that you say. Thank you.

[@NeilBradleyMS]

Hey Tom, good to hear from you .. like you I try and keep moving as much as possible and as you say no motion no muscle tone which is important. The problem with me is, in order to produce motion, you need "signals" via the nerves to make the muscles work. A little bit like an electric cable to carry the current to the light bulb, if there is a break in the cable the light doesn't work properly. That's the problem with me, there's too many breaks in the cable (nerves) and the muscles don't receive the correct signals, hence don't work properly and malfunction. The Metformin sounds interesting. All the best.

[@michelleslifeonrepeat]

For me, no two rounds of Botox are comparable. It is frustrating isn’t it. I’m sorry Neil.

[@NeilBradleyMS]

Hey Michelle, and thanks .. yes it's very frustrating indeed, I'm hoping that perhaps next time will be different. There has been one time in the past I didn't notice a difference, but then other times the improvement is huge. But I also think it is dependant on how bad I am as well, for example last year Teresa was pushing me in a wheel chair to my appointments as I simply could walk more than a few feet. Yes, it's very frustrating for sure. I hope you had a lovely Christmas Michelle, and we wish you all the best for the new year - Neil & Tree x

[@MichelleMybelle61]

Sending you a huge hug...please report back to us .. hopefully you will be feeling somewhat better. love to both of you 💕

[@NeilBradleyMS]

Hey there, good to hear from you.. and thanks for the hug 🤗 Unfortunately I'm not feeling too great, but a little better today than the last few days.. that's partly due to actually getting some reasonable sleep I think. You take care, and we're sending much love to you too 🤗

[@MichelleMybelle61]

@@NeilBradleyMS here's to a happy and healthy new year for you both🥳❤️ hope you are feeling better

[@supergatos1972]

Hi Neil. Can I contact you privately?

[@NeilBradleyMS]

Hi There, please feel free to message me on here.. I like to think other people can benefit from every conversation. Thanks.

[@mikemoon8037]

Hopefully steroid will be of help. But when it's time for change...you must

[@NeilBradleyMS]

Thanks Mike .. easier said than done I'm sure you will agree!