Don't give up Mr Grumpy! I can just imagine how exhausting this whole situation must be, seems like you can never catch a break... A big hug to you and Teresa, show us your kitchen when it'll be finished!

@NeilBradleyMS

2 жыл бұрын

Ha ha Kara, you spotted my cup then!! lol. Yes, it really does feel like I never get a break, I started to feel better, walk a bit better, then it's pulled from under me. It's just doesn't seem fair somehow.

@kara7197

2 жыл бұрын

@@NeilBradleyMS It is not fair at all! You know I've been called grumpy as well, I think the best definition for us is that we are fed up with all this s**t! Let's just hang in there.

@NeilBradleyMS

2 жыл бұрын

Ahh bless you, you're not grumpy! I think what able bodied and pain free people simply do not understand what being stripped of mobility feels like. In addition to that, add pain into the mix! They just don't know, it robs us of our happiness and well being. Yes, we definitely need to hang in there and stick together.

It's so good to see you both. Praying for you to start feeling better. Can't wait to see the updated kitchen. Blessings.

@NeilBradleyMS

2 жыл бұрын

Thank you Kathy, I appreciate that. The kitchen is still in progress, in fact the plasterer is here today, so there is some good progress being made. Take care.

Neil! Good,to see you and Teresa again. So exciting to be getting a new kitchen. Sorry you are experiencing so much inflammation and pain. I hope it settles down soon.

@NeilBradleyMS

2 жыл бұрын

Hi there! Yes, things are pretty crazy here at the moment.. we have people working on the kitchen even as I type this message. We're very much looking forward to the end results. Thank you for your kind words, take care.

Hi Neil and Teresa Great to see you both again A new kitchen fab! It's worth the mess and chaos for a while. X

@NeilBradleyMS

2 жыл бұрын

Hi Michelle, thanks. Mess and chaos is definitely correct!! But like you say it will be all worth it in the end. xx

Great video info, looking forward to your fast recovery...

@NeilBradleyMS

2 жыл бұрын

Thank you, unfortunately I got much worse after reducing the Pred, so I had to resume my normal dose, albeit reluctantly.

Great to see you. Sending lots of love xxx

@NeilBradleyMS

2 жыл бұрын

You too Dawn, much love coming your way. Xxx

Great to see you again Neil don't give up the good fight I recently had a relapse after 5 years It was sudden and shocking Nothing compared to what you go through on a daily basis I will keep you in my prayers and I wish you and yours all the best

@NeilBradleyMS

2 жыл бұрын

Hey there, and thank you for your lovely message and prayers.

Lovely to hear from you both. Would love to see your new kitchen when it is done xx

Nice to see you again Neil but it's tough to know your suffering. Sometimes we just have to take the meds just to get through the day I hate taking mine. Hope things start to look up for you. 😊

@NeilBradleyMS

2 жыл бұрын

Thanks Adrian, you too mate.

keep up the good fight. you ain't alone. Tom OB Connecticut USA

Nice to see you both, stay well and enjoy your kitchen.xx

There they are! So great to see you both! We were upside down for two years here, ugh! But the finished remodel made my life easier. So well worth it. My left eye started the squiggle floaters recently, not sure why but it has subsided somewhat now. I have a MRI scheduled, maybe the answer will come out then? You take care! Stay positive and keep moving. I’m going to try swimming, or water exercise.

Wonderful to see you both🥰 No doubt the roller coaster ride can be so very frustrating and challenging for sure. Sometimes you can ride with your hands in the air and other times your white knuckling it! But…Never give up!!! You have a whole team supporting you🤗😘 Can’t wait to see what you do with your kitchen!!!

Hi Neil & Teresa 👋🏻 Wonderful to see you both! Neil I can see the decline you are talking about. Praying that when you increase the Prednisone, your pan and mobility will improve 😊 I also can understand where you feel you want to give up. But you’ve come this far to stop now! Praying that the right combo of meds come your way to give you a consistent remedy. Thank you for keeping s all posted! Much love to you both 🤗❤️ xoxo Kelly

@NeilBradleyMS

2 жыл бұрын

Thanks Kelly, sending much love your way also. xxx

@peteperic1783

11 ай бұрын

Hi I'm on 20mg my thoughts are with you it's hard very hard my family don't getting it I'm try to do od jobs about the house after been very active I now what your going through ❤❤❤❤

@NeilBradleyMS

11 ай бұрын

@peteperic1783 Hey Pete, I’m so very sorry to hear this, that your having a tough time. I’ve learned over the years that actually EDUCATING people to you new normal, can be the hardest thing ever! Thoughts are with you my friend, always here if you want a chat. 🦋🙏🤗

Hello Neil. Have been wondering how you were doing. Sorry to see you're struggling. Its so frustrating isn't it. The mind is willing, the body not🤦‍♀️!!. My mobility down a notch again, and needing two crutches to get around indoors now. Keep strong Neil. Dont lose that willpower. Im fighting with you 🫂. Xx for you both.

@NeilBradleyMS

2 жыл бұрын

Hello Julie, how lovely to hear from you.. I am nevertheless sorry to hear you are too struggling and now having to use two crutches. Frustration for sure!! I'm in charge of a completely useless body, there's so many things I want to do but cannot (that I used to be able to do). It breaks me, I'm sure you can relate to a similar feeling. Take care.

You 2 are the sweetest couple. You both smile together, and support each other, I love that about the both of you. I only have my online MS friends or online autoimmune diseases friends support. My husband used to be better, but his health occupies his mind, and he’s forgotten about me. My family doesn’t understand. I beg you to see an eye specialist, not a regular eye doctor, but an Ophthalmologist. I just had serious cataracts removed last year at age 54, right before my 55th birthday. Now I’m 56, so Neil pay no attention to the ages. My Swiss cheese brain. The University of Michigan Eye Center, found them, she said it was all the steroids, throughout the years. It also gave me severe to moderate Osteoporosis. I don’t think men get that, but please get your spine and hips checked out. Mine are so brittle, they could fracture at anytime. I know you’re younger than me, but please be aware of long term steroids on the body. I know they help us greatly. You were doing much better in January. They cold and humidity affect my walking. I live in Michigan. Surrounded by the Great Lakes. It’s always humid here. Something I have noticed too, before it rains or snows my back is in so much pain, I cannot hardly function. I am taking care of my 82 year old mother full time now. I never thought I could do that, but she had 3 strokes, and it left her unable to do much. My adult children help me, but pulling and tugging on her, makes me want to collapse. With the plague and horror stories of Nursing homes during it, there’s absolutely no way I will ever put her in one. So it keeps me moving Have you tried Nuvigil for fatigue? It is what gets me through the days with my mother. Praying for you both, I’m not sure if Teresa has medical conditions, but you both said, you were not feeling well. So I continue to pray for you both. Looking forward to seeing the new kitchen too. Love and healing vibes to you both. Xx

@NeilBradleyMS

2 жыл бұрын

Hi Andrea, you really do have a lot on your plate! Life becomes even more difficult when family members become poorly, especially when your not well yourself. Yes indeed, the steroids! Sadly I'm all too aware of their long term side effects effecting eye and bones to name but a few. Cataracts can form prematurely due to the steroids raising sugar levels. As Teresa is diabetic I often take my blood sugar readings and keep an eye on things, as a rule it's pretty good. On the plus side of taking Steroids though, I've proved to myself they are keeping down inflammation because it was amazing how much worse I got when I stopped taking them. I hate taking them, but just feel I don't have a choice at the moment. Teresa has Arthritis pretty much in every joint, so she's in pain a lot of the time and really struggles, especially at night when it seems to get worse. Yes, it's lovely to interact with the online community isn't it, speaking to people in very similar circumstances brings us calming effects I think. In fact Andrea, I'm quite sure you're one of my first subscribers from way back. Take care - Neil.

@andreawheatley5528

2 жыл бұрын

@@NeilBradleyMS Thank you Neil, for the calming words. I appreciate that! I think I was, your very first subscriber, way back in the beginning. Hopefully, the warmer weather, will make us all feel better 🙏. Praying for you both. Andrea

I really wish I could say something to make you feel better but I can't also know is shitty things always happen to really nice people and you're one of the good guys so I'm sending healing and lots of love X

@NeilBradleyMS

2 жыл бұрын

Thank you Jackie, that's so very kind of you.. and yes you're right xx

Congratulations on the new kitchen!! You've been on my mind lately (both of you... waving madly at Teresa). Hang in there. I know how exhausting and depressing it is. Hang on. I find my symptoms worsen in the cold and damp. I hope you can get back to January level again! Hugs to you both!

@NeilBradleyMS

2 жыл бұрын

Thanks J, and yes will do. I tend to be a bit worse in the warmer weather with heat worsening my symptoms. Personally though, I do prefer the warmer weather. Just can't win can we. xx

@j.svensson7652

2 жыл бұрын

@@NeilBradleyMS Every day that we get out of bed and move, we win. Hands down, we win. Don't give in to despair my friend!

Don't give up!!!!

Hello my two adorable people. I was getting worried and wondering how you were doing. Never give up we love you both. 😘🥰😍❤️

@NeilBradleyMS

2 жыл бұрын

Hi there, ahh thank you that's so kind of you to say. Yes we're still here 💞🙏

Oh yeah!!! Never say that bad word again “ Giving Up”, no Sir, you will not do that, you fight as hard as you can 💪💪💪🧡🧡🧡🧡🧡🧡 Warmer weather and the birds are healing too! Never give up trying, no, no, no!!! 🙏🙏🙏💪💪💪🧡🧡🌟🌟🌟🌸🌸🌺🌺🦋🦋🦋

Hi Neil, long time no speak! Keep up the good fight, Neil. Not always easy I know, but hoping the increase in steroids help you immensely. Anyway, still watching all your videos on KZread, so always here, my friend. You and Teresa take care of yourselves.

@NeilBradleyMS

2 жыл бұрын

Hello Laura, how lovely to hear from you .. I spotted the notification come through on my phone with your name and I thought, "I know who that is". Yes, I keep plodding on taking it day by day, in fact hour by hour mostly. How's things with yourself?

@lauracameron2753

2 жыл бұрын

@@NeilBradleyMS I'm doing OK, thanks Neil. My balance has been a bit hit-and-miss lately, but I'm keeping busy. I gave up work to look after my mum as she has become a bit forgetful, so she is my main focus right now. Always lovely to see all of your and Teresa's updates on your videos, Neil. Take care of yourselves and will speak soon. 😊

Three weeks ago, you were still walking without a crutch. Today? Still doing that? Anyway, it was good to see you both......despite the sufferings you are both going through, you got the energy to do this update for us. Bless you.

@NeilBradleyMS

2 жыл бұрын

Hi Elaine, in answer to your question, no where near as much. For example, back in Jan I could venture to our outer gates and close them, confidently without my crutch. However now that has once again changed, I know longer feel so well balance and in control so I always walk with my stick. There has been a few occasions (now that I'm back on the 5 x Prednisolone) that I can do it, but I don't feel safe. Ho hum! It's really good to hear from you, take care.

I hope you are doing better. I think about my adorable couple often. 😘🥰😍

@NeilBradleyMS

2 жыл бұрын

Ahh thank you so much, that really kind of you. We are in the midst of having a new kitchen installed, so we’re rather upside down at the mo. It’s coming on nicely though. Health wise, nothing has really changed, we’re just ticking along day by day. I hope all is well with yourself. 🥰xx

wish something would help ,at least you could walk alittle, I'm down too a wheelchair now , its so hard to stay positive and hopeful, keep plugging away my friend God bless

@NeilBradleyMS

2 жыл бұрын

Hi Chris, Yes I do feel lucky that I can still walk a bit. I'm so really sorry to hear you're down to a wheel chair, damn! That's NOT what I wanted to hear, this condition strips us of all our dignity an well being doesn't it. It IS VERY hard to stay positive, I struggle a lot with my mental health now (never used to) and how this condition is making me feel, as I'm sure you are doing as well. I'm 50 this year, but for 40 years of my life I could walk and do pretty much anything, now I'm having to learn to cope not to. It really doesn't feel fair does it Chris. Stay strong my friend, Blessings to you.

So lovely to see you both ♥️ sorry things aren't great..but to me the fact you still take time to update everyone shows what a kind couple you are..stay positive and strong.We are all so proud of you .Love and hugs to you both♥️♥️♥️ I got floaters the biggest spider ones are named spot and blob 🤣🌹

@NeilBradleyMS

2 жыл бұрын

Hey there, it's great to hear from you once again! Thank you for your kind words, we really appreciate it.💞🙏 I had to smile when I read you'd named your floaters. For me it's like looking through cobwebs, I must have had them since my early 20's and I'm 50 this year. I honestly don't know what caused them in the first place, I've never really suffered with my vision. Perhaps it was looking at computer screens for a long time each day (I used to write computer software) I'm used to them now, but they're annoying.. but it concerns me when I read Prednisolone can add to the problem of floaters. I hope all is well with your good self, take care.

@MichelleMybelle61

2 жыл бұрын

@@NeilBradleyMS All is well thankyou Neil...I see my floaters first thing...the white ceiling makes them more obvious..mine are blobs with legs 😂 hence the names ..it could be a number of things that cause them.. thankyou for the lovely reply .Love and hugs to you both 🌹

Always good to hear from you. It certaianly appears the steroids are helping in your favor.👍🏼 I honestly know how you feel with the "giving up" comment. An ocean apart I feel your frustration. Enjoy the new kitchen. Please update us on the progress as it happens. See you next time.

@NeilBradleyMS

2 жыл бұрын

Thanks Lee, appreciate your thoughts as always.

Hi Neil and Theresa. I don't know how I missed this, as I am always watching for you guys. Neil, I am so sorry that things are not going too well. I broke down and got a wheelchair a few months ago... never ever dreamed I would be here! But, I got tired of pretending that I was doing okay with the walker... every step was an excruciating struggle 😪 but, I am quite a bit older than you, so please don't think I am trying to bring you down, or anything like that. I only wish the very best for you. I hate this disease so much!

@NeilBradleyMS

2 жыл бұрын

Thank you for your kindness Cynthia, it's lovely to hear from you. I am however saddened to hear that you've now had to bring in the wheel chair. I've been there! So I know how you are feeling. Teresa used to have to push me to appointments at the hospital because my body wasn't up to it. In fact there are videos on my channel with me using it at the hospital. Fortunately for me, at the moment I don't need to use it and honestly, I don't want to go back there. It's really difficult when you have to admit defeat isn't it. I'm sure you understand when I say there are so many things in life that have been taken away from us. So many things we enjoyed doing but can no longer. I've even had to give up my job (Computer software programmer) of 30 years recently which really upset me, because I loved my job. Oh, then there is the pain which is just endless .. even as I'm typing this message my legs are having the life squeezed out of them, well that's how it feels. I'm very sorry to hear that for you every step is painful, I really am.. and I don't feel you're trying to bring me down at all so please don't worry. I too wish you the very best. Wouldn't it be nice if our illness just gave us a break for a while. I'm so tired of it all. Anytime you want to chat, please feel free to drop me a message. I wish you the very best Cynthia. Take care - Neil.

@cynthialewis2096

2 жыл бұрын

@@NeilBradleyMS thank-you for your kind words. Yes, it is so hard to admit defeat, when you try and try so hard to ward it off, and it happens anyway. Six months ago, my main goal was to stay out of a wheelchair. Yep, I sure wish this demon of a disease would give us a damn break!! I am still working a couple of days a week as a skin care therapist, but working short hours. I am so exhausted just trying to get across my living room that working feels like running a marathon. So when the women I work with complain all the gd time how tired they are, I just want to scream!!! It is so hard to believe that less than 5 years ago, I was running my own business and working 6 days a week, 9-10 hours a day or more. Today I am going to my grandsons 5th birthday at a park, and then going to a memorial for my friend's son. He was 33 and took his own life 2 weeks ago. He and my son grew up together... so very sad for his family, especially his 2 little kids. I hope so much that you get feeling better soon. Please tell Theresa I say hello, and I hope your weekend goes well. Take care, and I will certainly message you and be in touch if I need an understanding shoulder. This disease is so hard to fathom if you don't have it.... I sure couldn't have before experiencing it! In fact, I really thought ms was not a huge deal, but everyone I met that had it seemed to be okay. They obviously had rrms, and I really had no clue about how bad it can get, and that there were progressive stages.. Okay, gotta go... takes me so long to get ready to go these days, as I am sure you know. Take care, Neil.

@NeilBradleyMS

2 жыл бұрын

Describing this disease and a “Demon” disease is the perfect description Cynthia, I like that. I’m currently just sat outside on our patio (replying to you on my iPad) as I feel very down in the dumps today, and a bit fedup of being inside. I’ve discovered just being in the sun outside a little lifts my spirit. In between resting, I’m just pruning a few plants in pots we’ve got, but everything takes so much longer to do and it’s frustrating. It’s very sad to hear about your friend’s son taking his life at such a young age, awfully sad. He must have been in a very dark place to do that, especially knowing he has a family that love and rely upon him. I must say, when you mentioned about work colleagues complaining of small things making you want to scream, I CAN TOTALLY RELATE !! It is SO annoying, I just think they’ve got no idea and need to spend a day, or even just an hour in our bodies. This morning I got out of bed, and seriously it would have been easier to list what didn’t hurt 🙁 I’m not sure if I’m alone in this, but I tend to people watch if I’m out.. I see them walking and going about their business, and I just think they’re so lucky to be able to walk so easily. I feel envious. I think you’re amazing Cynthia, if you’re still working considering all you have to cope with. I really didn’t want to give up my job I started at 19 years old (I’m 50 in Sep) it was terribly difficult and upsetting to accept. But I got to the point I couldn’t deal with the pressure of the job, and the pain, sleepless nights, disability etc, it was just all too much. I have to say that now I’ve almost come to terms with it, I do feel better for it. But for me working was just a way of life, it’s what we do. I know what you mean about those people with MS who seems to be ok.. I still get wound up now if I see a video of somebody with MS going for a jog, or they’re at the Gym. I would think, well why can’t I do those things, I can’t even jog on the spot. It’s been really nice chatting with you Cynthia, I will indeed say HI to Teresa for you and I hope you have a good weekend. Take care now, Neil.

@cynthialewis2096

2 жыл бұрын

@@NeilBradleyMS thank-you, my friend.

Hi, sorry been busy. Had & got various appointments . Interestingly this last cple weeks I seem to hav a a worsening of symptoms/ flare up/. Will reply properly, best wishes both xx

Hi Neil I keep TRYING to play games for distraction oh well maybe the next attempt will be a success

@NeilBradleyMS

2 жыл бұрын

Hey there Rick, I take it you're feeling a bit rough at the moment then.. I'm sorry to hear this if you are. Hmm, when the pain is too bad quite often the distraction doesn't work but it's definitely worth a try. Something else I've been doing recently now that the slightly better weather is upon us here in the UK, is just sitting outside. I'm finding being inside A LOT of the time is getting a bit depressing. So, I get just a chair out from the garage and sit outside, listening to the birds, a change of environment as it were. The only problem is, I start looking at the garden and think what needs doing lol, then realise I'm actually too weak to do anything. SO ANNOYING AND FRUSTRATING! So, if you're able, and maybe you have a bit of a garden or outside area perhaps it might be worth giving a try.

Hi Neil & Theresa. Hey Theresa, I can't remember if u do Crafts or not. If u do, u may enjoy Olivia's Romantic Home. She does a lot of Christmas. Also Bargain Bethany makes fake pumpkin pies, fake hot chocolate, etc using inexpensive stuff. I've had a busy week. Thinking of u both.

@NeilBradleyMS

Жыл бұрын

Thanks Shirley, Teresa says 👍she is going to check out your suggestions. We’ve also had a busy week, especially yesterday.. day out at the hospital 🤷‍♂️ story of our lives. What has been busy for you this week?

Good Morning, Just watching this has helped motivate me as even walking up and down my Garden (same size as yours) is too much effort, sitting here in front of the TV and PC is not good, and drives my poor wife crazy who costantly nags me to move more before leaving me here for her work, THanks for the effort you put in making these Vlogs. I had me own Travel Channel for many years but sadly it got Hacked so i lost everthing 😞 So I do know the work that goes into making them. I havn't taken the 5mg Valium yet (scared 🙂) I'm sure it wont kill me with 30mg Codiene hmmm or will it!!! lol TAke care regards John (NOT A stalker honest)

@NeilBradleyMS

10 ай бұрын

Hello John, and Good morning to you also. I do understand your wife wanting to motivate you, I really do. However, when the strength in your muscles simply is not there, simply taking a few steps can completely wipe you out for the next few hours, or indeed the rest of the day. With all due respect, it's easy for an able bodied person to say and do, but for us it's very very difficult. I've found educating people as to my condition and what I'm able and not able to do is one of THE MOST DIFFICULT things I've ever had to deal with. I'm extremely fortune to have a very understanding wife, Teresa really does get it. She actually encourages me to take it easy, it's me that pushes myself. I know you say sitting in front of the TV and PC is not good, but I disagree. If you have something constructive to do on the Computer that will be distracting you from the obviously symptoms and pain you're more than likely in. The TV in a similar way. You may want to try what I do, I have a set schedule for the day. I usually spend the morning on my computer, I've got several interests which keeps me going (and distracted). The afternoons, I try to do something different if I can. I'm terribly sorry to hear about your Channel and loosing all of your hard work. Have you considered setting up another channel to document your condition? It would in fact give your something to focus on. KZread security is much stronger now, with 2-factor authentication, so I'm confident you would not get hacked. The other thing is, when I document my condition and share it with the world on KZread, it actually make me feel better, knowing there are other people out there that understand and are going through the same thing. Why not give it some thought. Goodness, look how long this message is.. Don't worry, I know you're not stalking me ha ha.. the thing is I know first hand how it can make you feel a little chatting with somebody that understands. Sorry about this long message, take care and I look forward to perhaps hearing back from you soon. Neil.

@user-kk9zf4fx9t

10 ай бұрын

@@NeilBradleyMS Not at All i enjoyed reading it.The thing is my wife is a lot younger than I am Sherry is from the Philippines weve been msarried 20 years now and have a Nice house over there (just sitting there at the moment due to RA and possible chance of a Knee replacement here,(that would be twice if it goes ahead) OUCH. Hopefully I see a Consultant later this month who, with a bit of luck can help me with proper medication as I'm pretty sure the Codiene my GP will only give me or allowed too isnt enough, My Anxiety has got a lot worce since covid which is when my Arthritis really started. Hence my wanting to take the Valium, which I still havent taken for fear of an interation with Codeine. Silly me I know. Take care and thanks for the advice

Thank You

@NeilBradleyMS

10 ай бұрын

You're welcome

Hi Neil Wondering how you are doing?

@NeilBradleyMS

Жыл бұрын

Hi Michelle, about average I suppose .. thanks for asking though. Video is in the making, I just need to pull my finger out and finish it off. This week hopefully. I hope you are doing okay. 👍🙏

I had same, after finishing prednisone my sight improved. Is normal side effect

Hi Neil & Teresa , it’s so lovely to see you both as always. I’m so sorry Neil that you’re feeling rough, it’s the classic merry go round that we all face with chronic illness isn’t it , some days are good , others bad and some are just plain ugly. Hang in there , I’m sure you’ll bounce back once the inflammation reduces. As I’m sure you’re fully aware long term steroids bring with them a whole host of issues which is why drs are quite reluctant to prescribe them long term. Good luck with the kitchen renovation , can’t wait to see the finished look. Take care, Grace :) xx

@NeilBradleyMS

2 жыл бұрын

Thanks Grace, yes .. back in 2019 when I started these Steroids I was only in agreement because I was led to believe it would only be for 6 months. The thing is, I have improved a bit since resuming my normal dose which proves to me there is good in them. But, the long term side effects worry me especially with my eyes and bones. I feel the Dr's don't appreciate this sometimes. I hope you're as well as can be. xx

We’re you taking any other meds?

@NeilBradleyMS

2 ай бұрын

I was taking other meds, but only for pain. Prednisolone's primary side effects are eye related. This video is a couple of years old now, and I've been on 5mg of Prednisolone for quite a while now. Since reducing the dose my eyes have felt significantly better than when I was on a higher dose. When on the higher dose (25mg), my eyes always felt scratchy and well, just not right really. Also on this video, my face is so bloated, again this is Prednisolone doing this otherwise known as moon face. For me personally I'm very pleased I reduced the drug, I actually feel better than when I was on it funnily enough. When my consultant first started me on Prednisolone back in 2019, I was put on 40mg!! Never really told of any of the potential nasty side effects, so as many of us would I just assumed I was doing the right thing. It makes much more sense to start on a smaller dose and work your way up to the higher dose I think.

@vintagevibes1974

2 ай бұрын

@@NeilBradleyMS That’s interesting to me since here in the states they blast people with super high doses and don’t consider it to be a long term treatment. We have newer medicines they are pushing in replacement of Prednisone type drugs. I took 60mg blast and tapered quickly. I felt great till I hit the 21 or so day mark and had trouble continuing under 20/15/12mg but not sure if it was the side effects of prolonged therapy, withdrawing , or symptoms flaring. We slowed down taper and then I felt like the side effects were raging so I was able to get off by the 8 week mark. If my doctor agrees to this again, hopefully won’t be needed often or even more hopeful-ever again-then I would want to take a blast around 60mg and taper quickly before 21 day mark. I am glad you were able to reduce to lowest dose. This way your body still makes some if it’s own natural steroid. I am glad you are feeling ok on this as a compromise. I spoke with someone recently and they said the ups and downs of coming on and off this at high doses may be way worse than settling on a lower maintenance dose. That makes sense logically. Also, the research compares pulse dose at like 1500mg with low dose of 1mg but seems to lack anything in between. So their conclusion is over 1000 is better than 1mg. That’s an insane difference to compare. Anyway, I had a flare of sorts in the fall and finally decided to take steroid in February due to the intense nature of it, to calm things down, but now have to look at lifestyle and other factors. Bless you, I hope you are having a good day!

how long you suffer form blurry vision sir ?

@NeilBradleyMS

8 ай бұрын

Since this video I’ve reduced Prednisolone from 25mg to 5mg.. my vision has now improved but it’s not back to what it used to be like. Prior to going on Prednisolone in 2019, my vision was brilliant, always has been. Not any more though.

@sunilkumargautam6905

8 ай бұрын

@@NeilBradleyMS same here i am diagnosed with lichen planus a autoimmune disease doctor prescribed some skin medicine including prednisolone 5 mg twice a day after two days i stopped taking prednisolone and other medicine i faced severe side effects like tingling in hand and feet excessive and frequent urination and blurry vision (difficulty in focus on small objects and read small alphabet) all other symptoms are gone but i still faced blurry vision since one month

@sunilkumargautam6905

8 ай бұрын

@@NeilBradleyMS did you check your eyes through eye specialist like potential condition like glaucoma and. cataract

Tell teresa to text me too know how u guys doing

Hello lovely people! Well, on the bright side, at least the steroids are helping you - phew!! Isn't it a queer one though; I've only had steroids once (48hr drip thingie in hospital) and bugger me, they didn't work at all!! You know what - to hell with the 'long term', is what I reckon! I prefer a jolly good bit of 'feeling better right now'!! Christ alive, when you read the long term side effects of the drugs I take, blimey, it's a miracle I'm still alive! Personally, I swear by alcohol - nothing like a Spanish brandy, a chocolate curacoa and a nice drop of single cream. 3 doubles of those beauties (prepare them first, cos after the first 2, you'll never be able to mix a third!!) before bed cheers everything up! True, I'm even more wobbly on my legs but sod it, I just make sure I've got the old zimmer frame in arm's reach! I know what you mean, Neil, but 'giving up' is a terrible idea; think of all the sherbert dip dabs waiting to be eaten, all the daft dogs that need a scratch behind the ear to make their back legs go wobbly with delight(!) Talking of dogs, I am sore tempted to get another dog! I know it's bonkers, I know I'll have to find a good dog walker, I know it'll cost an arm and a leg but...I do miss having a dog! How about you two? Do you two ever umm and aaah and getting another dog or cat? Funny, you know, even when I felt absolutely rubbish, I'd still heave myself out of bed to see to the dog and, however, 'done in' I felt, it always make me laugh when she jumped on the bed, stood right on my rib cage and gave me that 'sideways' look! I am a very unpractical invalid!! Much love to you and Tree xx

@NeilBradleyMS

2 жыл бұрын

Hi Carol, it's lovely to hear from you .. you comments never fail to make me smile, so thank you. I know what you mean about the long term side effects of drugs, it worries me but then I think to myself I have to take on board the actual good they are doing. It's funny you should mention a drink at night, I like Port and I haven't had any in years, but spotted a bottle in the Pantry the other day. I'm very tempted!! But I take that much medication now for pain (which doesn't seem to work) I'm not sure whether to or not, they always say don't mix meds with Alcohol. But do you know (and you probably do) you get to a point where you just don't care anymore, stuff it sort of thing! In answer to your question about having another pet, the thought of another dog does go through our minds, a small dog perhaps.. you never know one day maybe. Good to hear from you and I hope you're keeping well. Sending much love - Neil & Tree xx

Hi Neil, that's an awful long time to be on steroids! The eventual side effects could be a lot worse than your current symptoms! I was told by my neuro consultant that the longest he would prescribe me for prednisolone would be 3 months and he wasn't even happy about that. John

@NeilBradleyMS

2 жыл бұрын

Hi John, you're right!! It's too long to be on these steroids and I've mentioned my reluctance to continue with them several times. When I first went on them back in 2019 I was told it would only be for about six months. The problem is, they are quite obviously doing some good because every time I try and come off them, my pain and weakness increases. So, I'm pretty sure they're doing their job by keeping down inflammation, the only problem is the worrying long term side effects. All the best - Neil.

If your jc positive why the steroids because of the continued suppression of you immune system 🙏 thanks

@NeilBradleyMS

5 ай бұрын

Hi there, thanks for your message. The steroids are super powerful anti-inflammatories, so (at the time) they were helping me by reducing inflammation in my spinal cord and hence slightly improving my mobility. This video is in fact a few years old now, sadly now the steroids have very little to no effect so quite some time ago I decided to no longer have them. I hope you are well. 🙏

@danielmcinerney9949

5 ай бұрын

@@NeilBradleyMS thank you sincerely for your reply but in the video you mentioned you felt worse immediately following the treatment then you slowly would get better? From what I understand about the JC virus,which I have, that it’s progressive mimicking symptoms of MS. I’m understanding my progression as it may relate to yours through your videos. That said if steroids reduce inflammation, and they do, in doing so it appears it may advance the JC, IMO. I have lesions as well on spine and on ocravus. I’m just trying to wrap my head around MS and doctors treatments. Thank you so much

Please text fb messenger 🙏🙏🙏🙏🙏 need to know how u and Teresa

@NeilBradleyMS

2 жыл бұрын

You can message me here.