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The effect of steroids in MS | Multiple Sclerosis Treatment | Chronic Illness 

Neil Bradley MS
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26 окт 2024

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Комментарии : 66   
@gittekronb9824
@gittekronb9824 3 года назад
I love your honesty and sharing your experience..once again it helps me so much. Thank you Neil
@NeilBradleyMS
@NeilBradleyMS 3 года назад
You are so welcome Gitte, we are so pleased the video has helped you. Take care.
@missdoglover1644
@missdoglover1644 2 года назад
Hello, just found this video as I’ve been searching RU-vid for steroid videos for MS. I hope you’re feeling a bit better now. I’m 2 weeks since completing a course of high dose steroids and my hands are still really bad. My MS Nurse said it could take up to six weeks so I still have hope.
@NeilBradleyMS
@NeilBradleyMS 2 года назад
Hey there, thanks for leaving me a message. The high dose steroids tend to hit the inflammation hard so if you think you're having a relapse it's important to try and catch it asap. I tend to find when I have these steroids, they work better for me delivered by IV as opposed to tablets. For the first few days I feel quite rough, you'll also retain a lot of fluid temporarily (this resolves over a few days so don't worry). Once I start to feel a bit better, quite often I can feel weaker, but this does wear off and I feel more strength and control returning. So yes, it can take several weeks, so hang in there. I've had these type of Steroid several times at the hospital, and I've done quite a few more videos on them should you be interested. I hope things start to improve for you very soon. Take care - Neil.
@gittekronb9824
@gittekronb9824 3 года назад
You give meo much hope...and I don't feel alone🌹and Tre.😁you are an amazing lady Xx never give up Neil...you are a fighter
@NeilBradleyMS
@NeilBradleyMS 3 года назад
That's awesome Gitte, not wanting to sound negative but 'hope' is something I find myself leaning towards a lot more just lately. We have to have HOPE don't we, it inspires us to keep moving forward and fighting!. Yes indeed, Teresa surely is a God send, I can't imagine my life without her. I hope you're coping ok Gitte and managing your symptoms okay. Take care xx
@Princesscarlie
@Princesscarlie 6 лет назад
I’ve been praying for you every day I pray that you will be healed and everything will be OK
@NeilBradleyMS
@NeilBradleyMS 6 лет назад
Hey there, ahh thank you so much.. that's really kind of you and your prayers are gratefully received.
@rikke3101
@rikke3101 6 лет назад
What a roller coaster last week must have been for you. It was quite amazing to see you pain free and feeling so uplifted mentally. I so wish it would have lasted longer. I am terribly sorry that it didn´t and it kind of baffles me how it can go from amazing to down the hill so quickly. The vicious circle you mentioned (about the ms leading to muscle and nerve pain leading to back pain) makes a lot of sense. When I was in rehab after my back surgery I learned that the best thing to do is to move around naturally. Not move around with a stiff back in an attempt to spare it, because that will only make it even more tense and stiff and eventually cause pain. And that is exactly the vicious circle. But with nerve pain on top of that, I can only imagine how hard it is for you not to be tense. I don´t know if you´re still seeing the neuro physio or a physical therapist, but if you are, I hope it will help with the muscle tension and ditto strength. Hugs for you and Teresa.
@NeilBradleyMS
@NeilBradleyMS 6 лет назад
Hi Rikke, yes it's amazing how quickly I went to feeling really good with radical improvements to back downhill so quickly. I suspected this would happen and so had semi prepared myself. Yes, I've given a lot of thought the the vicious circle and what's going on with me, and I truly believe that is what's happening. You're absolutely right Rikke, if the pain is bad then moving around simply antagonises it more so I don't bother. Also, I try to move about naturally and honestly, sometimes I do it without even thinking, then I think to myself wow I did this, or I did that! They are the moments when I feel 'normal' and remember how I used to be all those years ago. I'm coming to the end of my NeuroPhysio as I've been going six months, I've felt for a while they were struggling to know what else to do with me. It's been amazingly valuable though, because I've learned all sorts of exercises and stretches which have helped me massively. As always Rikke, it's great to hear from you and I really value your input and encouragement. I hope all is well with yourself. Cheers - Neil.
@glenwestphal7510
@glenwestphal7510 6 лет назад
I can't believe how much your MS mimics mine and the attacks are so much in since , it's down right creepy wish there was a way to talk to you it was your videos I first seen over 8 months ago when the doctors finally figured out I had MS and for about 17 years. Glen from USA
@NeilBradleyMS
@NeilBradleyMS 6 лет назад
Hello Glen, great to hear from you. Yes, it's very creepy indeed how many people including yourself who've said to me their symptoms are almost an exact match. I suppose its the nature of the condition, even thought they say no two people with MS are the same. 17 Years is a long time, for me I started having symptoms in 2007 but I wasn't diagnosed until 2013 after just over a year of test. Glen you can always contact me on here, I continually monitor my channel and answer everybody's comments. If you want to chat, we can perhaps always arrange something through Skype of Facebook etc. Take care - Neil.
@seldon7
@seldon7 6 лет назад
Neil... your flowers are so lovely. They remind me of your marriage to Mrs. Bradley. No matter what the weather's like outside.. hot, cold, rainy.. They endure and remain beautiful. I know it must be difficult to remain positive these days but as usual you continue to inspire others to keep fighting the good fight. You health may be poor but your legacy remains strong. Loved the video bro.
@NeilBradleyMS
@NeilBradleyMS 6 лет назад
Steve, you're so kind! It's great to hear from you, how are you keeping? Yep, I try and remain positive but as you say I continue to try and inspire others. I love reaching out to people with my channel and building this little community, makes me feel good and that I'm making a difference. So pleased you liked the video :)
@janeweaver4733
@janeweaver4733 6 лет назад
Hi Neil. I hope today is better. I think the steroid swing will move you back to feeling more well again soon. I had the same high and low experience with steroids, but things eventually leveled out. I think that a poor gait causes back and neck pain. Back and neck pain cause a gait problem. Keep going. You are a warrior. Thank you for sharing.
@NeilBradleyMS
@NeilBradleyMS 6 лет назад
Thank you Jane, that’s lovely of you to say. Yes I agree with you, the MS has affected my gait so badly that my back is compensating considerably. I am having a better day today Jane, but that’s because I’ve made a decision to start taking things really easily now, consequently I feel a lot better in my mind also. Not so stressed. Hopefully the steroids will level out, but yes the high and lows of the steroids are pretty radical and difficult to deal with aren’t they.
@janeweaver4733
@janeweaver4733 6 лет назад
Learning to relax, meditate, and accept will improve the gait and the pain. That's the irony of this, isn't it? The less peaceful we are, the more aggressive the disease becomes. It's damned frustrating. I do relax at the sound of Teresa's voice. That's strange. But she calms me. I hope she calms you, too. Just sit, relax, and be in harmony with the universe. T'is as t'is. There is still joy even if our mobility is hacked!
@NeilBradleyMS
@NeilBradleyMS 6 лет назад
Hi Jane, You’re right, that is the irony for sure and yes, it is so damned frustrating. I’ve always been a man which works hard (full time for 25 years until I became ill) and then always keeping busy at home etc. But to be reduced to hardly being able to even walk down the garden, that is such a tough pill to swallow. Yes Teresa does have s very relaxing voice, but not only that her entire nature is very gentle. We still share very joyful moments, and like you say even though we have Ill health. We are not people that need to be spending vast amounts of money or going on lavish holidays together. We are just happy in each others company, and as you say quite rightly, living in harmony with the universe. I can definitely relate to that.
@andreawheatley5528
@andreawheatley5528 6 лет назад
Good luck Neil, and I am still praying over you.
@NeilBradleyMS
@NeilBradleyMS 6 лет назад
Hey Andrea, always great to hear from you. Your prayer are gravely appreciated, I hope this message find you a well as can be. x
@andreawheatley5528
@andreawheatley5528 6 лет назад
I am having a good day. Neurologist took me off of Aubagio, because of side effects and I'm going back on Tecfidera. I hope you are feeling better today as well friend.
@NeilBradleyMS
@NeilBradleyMS 6 лет назад
I’m not feeling to bad thanks Andrea, yesterday I noticed my balance was a tiny bit improved and I was moving about better. Glad you’re having a good day, I hope you manage ok on Tec, and you don’t suffer too many I’ll side effects.
@karenpny
@karenpny 6 лет назад
I’m so sorry Neil, thanks for sharing your experience with us. It’s very hard staying positive when you feel sick/weak/pain every day, isn’t it?
@NeilBradleyMS
@NeilBradleyMS 6 лет назад
Hi Karen, and thank you. Yes, its very hard to keep positivea amongst all of pain etc.. I fear the future most of all and what is going to happen next.
@Tns85
@Tns85 6 лет назад
In reference to steroids. I have had many infusion s, sometimes just the high dose of ateroids can take a toll on your body throughout the process and my legs tend to become weak like you explained
@NeilBradleyMS
@NeilBradleyMS 6 лет назад
Hi Teresa, I know exactly where you’re coming from. I feel my body has taken a beating the last few days. Initially I thought I was doing well as I’d not felt so good in months, and had no pain! Amazing! Yes my legs are also very weak Teresa.
@Tns85
@Tns85 6 лет назад
I guess we just press on and keep moving
@sue4531
@sue4531 6 лет назад
Neil I love that youve named your birds, cool names too lol 😂 I just wanted to say THANKYOU for all the vlogs you do cos I absolutely love them, You & Teresa are such sweethearts & your both so helpfull & you make me laugh, cry, but most of all you make people feel like they have a friend that understands them, the information you give by vlogging is so helpfull & inspiring & Teresa is so positive & funny, I just love you both & what you do for people by doing your vlogs is amazing, you help so many people, anyway just wanted you to know lol Im trying to write shorter books!!!! Im not doin too bad I think so im goin now ha 😂 Take care both of you ❤ Talk soon xxxxx
@NeilBradleyMS
@NeilBradleyMS 6 лет назад
Thank you Sue, that's so lovely of you to say so. That's what my channel is about, reaching out and trying to help people feel just a little bit better by letting them know they're not alone with this horrible condition. I have to say, it's lovely to have such a good friend as yourself and I'm so pleased my channel put us all in touch and connected. Shorter books eh Sue? Hmmm, ok .. well as long as you realise I honestly don't mind if you've got a lot to say. You take care. xx
@vintagevibes1974
@vintagevibes1974 5 месяцев назад
Acupuncture is of great help. Do you mind me asking, how many milligrams of steroid dose did you take? Did you taper? Thanks
@NeilBradleyMS
@NeilBradleyMS 5 месяцев назад
This is quite an old video now, but I think in it I would have been talking about actual IV Steroids. This would be 1gram (high dose) intravenously every day for three consecutive days, in hospital. Generally for a quick dose like this in hospital, no taper was needed. I’ve not had these type of steroids now for coming up for two years now, as I no longer respond to them. I hope this information helps you. Take care. Ps. I’m super pleased to hear acupuncture is helping you. That’s really great 👍
@vintagevibes1974
@vintagevibes1974 5 месяцев назад
@@NeilBradleyMS thanks. I was just intrigued how some are taking steroids at lower doses long term and some aren’t. It’s hard to know if that plays j to some of the progressive symptoms or not, no?
@dorothydoell7629
@dorothydoell7629 2 года назад
Amen 🙏
@Tns85
@Tns85 6 лет назад
Steroids can be wonderful for a short peroid of time and except complete tiredness when they wear off😬
@JessicaAnderson-qs8xk
@JessicaAnderson-qs8xk 6 лет назад
Hi Neil and Theresa. I have been following you both for a while now. Oh how my heart aches for you with your news on Sat after the steroids. I see you and your struggles and I see my son at the same time. My son can get the odd day with what they call a minor improvement it's rare but it happens and his little face lights up just like yours did with the slightly better steroid days or the odd slightly better rare day you have.But also like you he to says it's not going to last mum it never does. For me to see his face drop his mood plummet the next day when he is bad again my heart bleeds. I saw the same in you so sorry Neil and Theresa hugs. My son is 30 this year. He had flu in April 2016 and just at the end of the flu he got struck down with Transverse Myelitis you are both very similar in presentation. After a ten day stay and being told there was no more they could do after IV steroids and steroid tablets reducing for ten weeks and that it was a very rare condition they knew very little about his life went into free fall with permanent damage in many areas. As soon as he came home he started getting these horrendous episodes on top of the TM damage. I pushed for an urgent appointment with a neuro and the neuro was absolutely horrified when he saw the videos of my son and what his body had been doing as the other hospital had discharged him not even listening to us trying to explain what was going on. He was scanned again in the July and we got the MS diagnosis in August. Since then it just keeps progressing we are all absolutely sure it is primary progressive. The neuro wouldn't give DMDs last year as he said if it is progressive (he couldn't see any relapses on our day diaries) they won't work which I knew. My son is drug sensitive anyway and doesn't like side effects as he says he has more than enough to contend with 24/7 and he has an anxiety disorder so he would worry himself to death about the drug risks and side effects. He has never improved only got worse and his EDSS was a 6 from the beginning. I adore him and look after him on my own. Every day I tell him I love him hug him and kiss him. I let him talk about how he is feeling I ask him how he is. But above all I wish to Christ I could make him better as his mother that is what we do. I wonder where the MS is going to strike him next as he has been hit in many areas already and so does he. Like you said Neil it scares you to death at times my son is the same with his fears. Also for the loved ones like Theresa and myself we to get scared for you we just want to help you so much to wrap you up and protect you. Thank you for doing the videos it helps me not to feel so alone in caring for my son and for knowing there is someone who is very similar in symptoms.Thinking of you both bless you and big big hugs. Take good care of yourselves. Jessica
@NeilBradleyMS
@NeilBradleyMS 6 лет назад
Hello Jessica, thank you for taking the time to write Teresa and I such a lovely comment and to tell us about your son. I'm so sorry to hear of your son's illness, its a terrible thing it really is.. I must say I was fascinated to hear your son was diagnosed with Transverse Myelitis (TM), because so was I !! Amazingly also, I suffered with a very severe chest infection where I lost my voice but suffered no 'cold' side effects. Shortly after I recall starting with all the weird symptoms. Back in 2007 when I started with numbness and burning in my feet and hands, that's what they thought it was (TM). Over the next few years I got better, until I had another attack in 2012 and I was diagnosed with MS in 2013. I've documented all of this in my early videos Jessica, which you may be interested to watch. If you work your way through my playlist starting with the first video: ru-vid.com/group/PLKh4CtwH9cEUJcntnXWXyo-OtqnMccwWU The most common form of MS is Relapsing Remitting, but I never fitted into this category even though I was diagnosed with it.. I too always thought (and still do) I was Primary Progressive because I tick most of the boxes, but the Dr's disagreed. They now say I'm Secondary Progressive with Superimposed Relapses. If you don't mind my asking Jessica, how is the TM and MS effecting your sons body.. I'm guessing he's having trouble with his mobility etc? I know all to well about the DMD, if you're not RRMS then basically there's not a great deal of choice.. although there are new drugs coming on the market like Ocrevus which is for PPMS. I love doing the videos Jessica, and you're very welcome.. it's turned into a hobby of mine. When I do a video its like reaching out to other people with similar conditions and it makes me feel better. Like you say, it also works the other way around for people such as your son knowing he's not alone.
@JessicaAnderson-qs8xk
@JessicaAnderson-qs8xk 6 лет назад
Hi Neil bless you and thank you for the reply. This is a long one for you to read apologies hope this is ok? My son started out with pins and needles - numbness starting in both his feet very subtle in the night on the 7th April 2016 in bed the sheets were making it worse - he woke up next morning his feet were worse - he noticed his vision was blurred and really bad pain right eye - tried to get out of bed but as he stood up his feet and legs felt weird and he lost his balance and had to grab wall to stop him falling - he could walk but things were off - left thumb and index finger tingling - burning feet -This was after a brutal bout of flu or something like flu that put him in bed for 7 days unable to do a thing. We went to A & E on the 8th. I insisted on me telling optic guy about pins and needles as well as his eye my son was saying "there's no need" I said "yes there is" I knew it was bad then. I have always had this knack of knowing when something is medically wrong and it's dire I have a very medical mind and it has literally saved my childrens lives on more than one occasion even butting heads with medics. Optic guy at A & E said optic neuritis due to flu. But when I told him about his pins and needles that had now spread to his calves both legs. He said " If he starts having breathing difficulties it get's worse he starts losing his balance you must bring him back immediately. It was alarming to say the least. About an hour later getting back into taxi after burger as we had been at hospital ages. He started falling backwards trying to get into taxi it sacred us both to death by the time we got home he was struggling to get up front door step and couldn't take on the stairs without resting. His legs were getting weak and he said he felt very unwell. I helped him upstairs to rest he didn't want to go to hospital. It started on the 8th April A and E 9th April it became accute and I rushed him in. The day of admission at home he was on all fours on his bed crawling round not knowing what to do with himself. He was up the wall with pain in the middle of his upper back on his spine it then shot round the sides of his ribs into the centre of his chest. He came downstairs and laid on the futon and said "I don't know if this is a heart attack the pain is horrendous" we now know it was his nerves dying in his spine. He still fought hospital he was so so scared bless him. I knew it was TM or Guillain Barre. The pins and needles were spreading to his knees excruciating. So I said that's it hospital. It took many many blood tests - the speed of the spreading of the pins and needles and crushing sensations etc was terrifying. He had balance issues - bowel bladder urgency. He had like a parachute harness feeling between his thighs and in between his butt ( he said it was like having a wedgy it was so bad he kept thinking his boxers were riding up so he kept trying to pull them down but they weren't) and gripping crushing sensations numbness etc in his private areas. It was very sensory - he had muscle strength which was a godsend it seemed to miss that bit - lumbar puncture. Two days later afer staying on A & E accute ward diagnosis of TM supposedly from flu. They transferred upstairs and ran more tests. 2 MRI's broke every time he got on one. MRI a week later they were booked solid machines breaking did not help. They kept asking him " where is it now the band ok it has spread further if it effects your breathing we will support you try not to worry ok" yeah right blind bloody panic in both of us as you can imagine. They asked about his breathing multiple times a day for ten days solid as it spread right up to his sternum all the way round his torso. Apparently TM can target the breathing muscles and we were warned to watch out for this in future at home due to how far it spread and because of this band he has now if the TM activates again. He was a very very lucky boy as it was sensory only thank god. That damage is permanent with his banding the level has dropped down a bit but he has a permanent crushing concrete type band there that gives him torso weakness and it hovers around a 3 -4 score but can get much worse depending on what the MS beast is doing whether he is having a bad day in general he is sick with a bug the temperature hot or cold. He had a bit of healing from the TM ( they said it was a rule fo 3rds 30% recover 30% make partial recovery 30% don't) he minimally partially recovered. His finger and thumb healed - the parachute sensation went - the pins and needles have reduced in intensity more subtle and not so painful now - but all the crushing - concrete banding swelling expansion in both legs - feet - torso horrendous for him still here grinding him down. Swelling feelings in feet - burning any change in temp hot cold he suffers immensely -massive problems with temperature regulation either up or down cool temps worry me as his temp drops massively I know hyperthermia is a risk in patients with cooler temp regulation problems - drenching sweats either with or without MS activity - exaggerated startle response a very rare symptom causes him to jump violently (dropping stuff if he is holding something) multiple times a day with either someone coming into room without warning - sudden sirens - door banging - a sudden touch - a voice from other room. I have to be so careful round him as it massively exacerbates his MS TM symptoms and makes him feel extremely unwell. This startle response causes buzzing - tingling all down his arms when he jumps and it now causes buzzing and tingling in centre of his chest - many types of chronic disabling neuropathic pain - 24/7 crushing fatigue and weakness - chronic insomnia like he has a multiple shots of caffeine he hasn't his brain will not go to sleep. I know the disease process can cause insomnia then his symptoms keep him awake to. Hi eye healed a teeny bit but is permanently damaged he can see but he has lost colour and it is a bit blury but he can see so that's good. He has severe depression partly situation partly from before but definitely the MS activity is causing some of it. Balance issues due to lack of sensory input to his muscles.Cognitive struggles very bad memory issues concentration info coming in going out focus word finding etc. The MS has made his attention deficit disorder much much worse when it was very disabling prior to this damn disease and his general anxiety disorder before all this was horrendous you can now imagine what this MS TM has done to it. As you all know MS makes you bloody anxious and fearful with good reason. He can no longer get up in the morning until around 10.30 am as his body cannot handle movement since TM started it shocks his system. He has needed a wheelchair outside from day one. We now have a electric powerchair quickie salsa M2 with specialist supportive seating and tilt in space for the fatigue. He is pretty much house bound as he just cannot cope with going out. He does minimal steps inside home due to pain - fatigue torso weakness and a myriad of other symptoms and now he has leg and feet weakness. He spends him time in his tilt in space recliner chair and oh my gosh it is a life saver for him. It means he doesn't have to get into bed. Mobility is really limited in how many steps he can take but for now he just about walking room to room in extremely short bursts in our true level access bungalow that I fought for last year as he was stuck upstairs for a year in our house unable to use the stairs unless going to hospital and then it was like dicing with death trying to get him down them. Showers well we have a wet room now and yes Neil just like you it kills him he cant shower every day as it has a devastating effect on his symptoms it is beyond him. Recently he has had bouts where he struggles to speak to me as he is so weak so that's new. Damn bloody MS. He is having virtually constant progression since day one. His legs and feet weakness various pains are worsening and spreading etc His upper back pain restarted the other day on a lower scale but he has lesions all up his spine and in his neck. He never improves and he has been really bad recently consistently worsening now for months. He cannot have any more steroids they didn't work anyway on his horrific episodes he had when he came home. There is much more but I think that is enough. My son is a pretty rare case so all of you that read this please don't panic and think for one minute you will be the same. My son has just been incredibly unlucky with both conditions. Whether it was MS from day one as I know it can present with TM who knows. I think it was MS from the start as he got hit in so many body systems. True TM is across the whole spinal cord only and is in that area only- Partial TM part of the spinal cord like my son had and multiple system involvement tends to be MS that's what I have read in extensive medical research. I just think the flu and a few very major stressful events just before were the catalyst and lack of vit D as my son has mental health issues and ADD so doesn't go out much. There is also a question if I have it as I had tests years ago. I had a lesion on my brain delayed nerve conduction studies etc. I need to go to the hospital as I have been having some sensory issues over the last 2 years first in left leg then in my right foot recently. I need to keep that quiet from my boy though. Bless you and hugs to Neil and Theresa and to each and everyone of you. Remember you are all amazing stay as strong as you can for you and if is a bad day cut yourself some slack and be kind and gentle to yourselves lean on people who love you if you have that option. Take good care of yourselves please. Jessicaxx so rapid it's scary. It is hard not to panic to be honest as it has hit so many systems in his body.
@NeilBradleyMS
@NeilBradleyMS 6 лет назад
Hi Jessica, Thank you for telling me about your son, and his horrendous difficulties since having Flu in 2016. Oh and it’s no problem about your long message, I’ve been known to write a fair bit myself at times. I’m grateful to you taking the time to write about your experiences with your son and post on my channel, for others to also read. I found the read fascinating. It’s amazing how similar your sons first symptoms were to mine. I also started with that ‘altered’ sensation in my feet, which then spread to my legs. I had major issues with bed covers on my legs too. I couldn’t believe it when you talked about the ‘wedgy’ sensation, because I also had that so I can relate to it very well. I’ve also got the bladder urgency/frequency which is insanely difficult to deal with and is the root of a LOT of anxiety. I was initially diagnosed with TM, suffering with terrible burning feet/hands, also numbness. But over a period of five years I got better and better (but never completely better) until I had another attack in 2012 which led to an MS diagnosis in 2013. I’m so pleased your son has got such a loving and dedicated mother to luck after and care for him. Sending blessings, take care. xx
@kgdank420
@kgdank420 6 лет назад
Hi Neil, I'm so sorry to hear about your pain. I am currently in the hospital and just been diagnosed with MS. They found inflammation in my spine and want to start me on IV steroid treatments. My symptoms are not bad at this point. Only numbness on my left side and tingly right hand. at this point, it's bearable. would you advise starting steroid treatment if i'm not really feeling any type of pain at this stage?
@NeilBradleyMS
@NeilBradleyMS 6 лет назад
Hi there SK, I’m very sorry to hear about your recent diagnosis, it’s not what anybody wants to hear. From what I’ve learned over the years, steroids are given to people (with MS) when they have active lesions. The steroids will help calm the inflammation in your spinal cord, and accelerate the healing process. However the Dr’s will tell you the outcome is always the same. It really is your choice, but if it was me I would want to start reducing the inflammation as soon as possible.
@kgdank420
@kgdank420 6 лет назад
thank you Neil for your words of advice. I will probably go ahead and start the IV treatments. They also want to start me on a low dose of Rituxan beginning tomorrow. This whole thing is so much to take. Thank you for posting these videos to educate newbies like me to this disease. I will begin watching all your videos to get a better idea of the progression before asking any silly questions. again, thanks!
@NeilBradleyMS
@NeilBradleyMS 6 лет назад
Hey SK, your questions are definitely not silly. You’ve found yourself in a situation you never thought you’d be in and it’s nice to call upon the experience of others that’s been there before. I’m so pleased you’re finding my videos helpful. If you watch “Join us on our little adventure” at the end of the video I talk about the side effects of the steroids. They aren’t too bad, but you may like to know about them before you start your treatment. I hope this help you. Good luck.
@NeilBradleyMS
@NeilBradleyMS 6 лет назад
Thank you also SK, for your Sub, good to have you on board.👍
@ishouldbesleeping1354
@ishouldbesleeping1354 6 лет назад
I love ❤️ Cedric and Cecilia his good wife. How cute is that?! I’m tapering off my steroids this week and I’m scared it’ll be downhill from there, but I agree, they really help! It’s nice to not have to sleep all the time for now! You mentioned Parking in the UK ...they must not offer handicap parking! 🚕🚗🚑 stay cool and settle in🌬
@NeilBradleyMS
@NeilBradleyMS 6 лет назад
Cedric and Celia are a bit illusive at the moment but I still do see them from time to time. I really love those beautiful little birds, they bring so much pleasure just to see them going about their business. It’s not necessarily downhill now you’re tapering off the steroids. I had steroids for the first time back in 2013, and their effects lasted months. Fingers crossed this will happen for you also. Yes we do have a blue badge scheme for disabled people here in the uk, of which I am a member. It’s a God send as well, I see a lot of people abusing it though. Yes trying to stay cool at the moment, but difficult to be honest and it’s so hot, I hope you are too. Thank you for your lovely messages, it really is nice to chat with you.
@Tns85
@Tns85 6 лет назад
The pain transfers to my right side under my rib cage, does this happen to you?
@JessicaAnderson-qs8xk
@JessicaAnderson-qs8xk 6 лет назад
Hi Neil I don't know why but my comma isn't working on keyboard so apologies if my text all merges into one the dashes work though. My thoughts with regard to Ocrevus this new experimental drug and also the other hard players as I call them Tysabri etc there are significant risks plus side effects as you probably know - obviously some people get some of the risks and side effects but not all. I have the utmost respect for patients who make the choice to take these drugs but for my son he does not want to take the chance even if neurologist offered them. I do not influence him in any way but as he said he knows even if he was offered any he would still refuse and he knows he would possibly seal his fate by refusing although there is no guarantee that any drugs will work in slowing any types of MS until you try.. But I fully understand and respect why he has made that choice. The neurologist did say even if he thought a DMD would help or not as the case may be if it was not/ or was progressive etc the DMD would most definitely effect his quality of life even more especially as he is so high on EDSS disability scale from day one, and is already struggling massively. He also said that all drugs have side effects, I admired that in our neurologist he was honest. My son has sustained so much damage from the beginning and it is most definitely permanent degenerative nerve cell destruction PPMS rather than the more inflammatory mechanism which drives RRMS and tends to be more treatable with the DMD's. With regards to the above drugs I know I have read on NICE and other neuro medical stuff that there seems to be a cut off point for treatment with Ocrevus and other hard core DMD's at either a 6 or 6.5 on the EDSS scale after that forget it they won't treat you because you have gone to far with the damage and I suppose treatment on a frail body would not be the best idea. It is a harsh reality but understandable and upsetting for the patient and family. It's the same I believe with the experimental stem cell treatment EDSS of 6 - 6.5 or lower to gain treatment I believe. Please do your research to check that info though for yourselves. I believe my son is getting over a 6 EDSS now as his legs and feet are shot. He can't walk much at all or stand for more than a couple of minutes. Also with Ocrevus if you go here for info www.mstrust.org.uk/a-z/ocrelizumab-ocrevus there are high risks with both upper and lower chest infections also things like cancer etc. The drug lowers weakens immunity when MS patients are already struggling with that. In the case of my son he gets really bad asthma and chesty with bugs so a drug that weakens immunity further and high risk of chest infections and all that entails probably not the best idea even if he could have it. We all know that illness bladder infections high temperature etc can have pretty dire consequences on MS activity. It is an awful situation for you all as you are gambling with everything. I believe both MS patients and carers have to try our best to enjoy the simple pleasures in life try to take one day at a time (easier said than done) roll with the bad days weeks months years and allow ourselves the emotions we all feel. It is bloody hard going at times and everyone is hanging on by their fingertips on this horrendous ride that twists and turns at every opportunity it gets. All of you out there love each other - hug each other - listen to each other lots - exercise patience - empathy - understanding - ask how each other is doing it is important - laugh if you can - have a good cry if you need to - chuck ice cubes rather than plates on the patio if you need to go aaaargh for goodness sake or words to that effect it's a great stress reliever seeing and hearing ice cubes smash. Sending you all huge hugs blessings love and light. Take care Jessica xx
@NeilBradleyMS
@NeilBradleyMS 6 лет назад
Thank you Jessica, It sounds like your son shares my thoughts also about drugs. I absolutely hate the side effects and they worry me. Back in 2008 I took a nerve pain killer for the first time and it gave me Tinnitus! And I only took the one tablet, I was trying to get some relief from the nerve pain. Since then the Tinnitus has calmed down (it flares up though) but I’ve been scared to take anything new ever since for fear of the Tinnitus starting up again. I was also on Copaxone for two years which is a DMD drug, stuck it out for as long as I could until I couldn’t take the injection site reactions any longer. I was considering Ocrevus because I’ve seen so many people on it say how their mobility has improved. This excited me and I suppose I’m reaching out a bit in the hope the drug would do the same for me. I too don’t like how the DMD’s work, I’ve done my homework and I know pretty much all of them dampen the immune system, to slow down MS attacks I suppose. But I still don’t like it. I’ve enquired about Ocrevus and it’s doubtful I’ll be eligible anyway as they ‘think’ I’m Secondary Progressive which counts me out. Great chatting with you Jessica, and please pass on my best regards to your Son.
@JessicaAnderson-qs8xk
@JessicaAnderson-qs8xk 6 лет назад
Hi Neil Ahh that's good you have done your research and there is no harm trying stuff and hoping to it's what suits you best no one else. You keep smiling as much as possible and fighting all the way. I will most certainly pass your message on. Thank you. Take care. Hugs to both of you. Jessica
@dademyst447
@dademyst447 2 года назад
how r u mate?
@NeilBradleyMS
@NeilBradleyMS 2 года назад
Hey there, ups and downs to be honest.. Every day is different and just never know what to expect. Mobility is terrible as usual and I have a lot of pain recently, pain killers don’t touch the pain. Thanks for asking, how are you doing?
@dademyst447
@dademyst447 2 года назад
@@NeilBradleyMS hi man sorry the late answer...I m soso I had 1st attack in 2016 but that time they told me was an ernia then nothing for 6 years almost...til December 21 two months after that bloody covid vaccine I got this 2nd attack...tingling hands feet and ms hug. Inm better but my hands are not back yet.. I know it can take time or they cannot back anymore...I still have hopes. I was in malta where they don't give steroids so easy so I went back yo italy my country after 4 months (I went to malta with a contract I was so happy) where they gave me steroid altough 5 months were passed..I m very depressed sometimes as I lost my job my career as I couldn't type or writing and apart avonex which I still take i didnt have access to steroids.. plus there is pretty hot there and the hot temperatures are a nightmare for us with MS. also my ex gf didn't want to see me anymore she said is not because my disease...but u never know....so I am trying to find a way in this new life but is not easy.. here unemployment is very high and I cannot do alot of jobs because fatigue....sorry...hope I didn't annoy u...I will be better I hope :)
@dademyst447
@dademyst447 2 года назад
@@NeilBradleyMS I hope u can improve..have u ever tried CCSVI PTA?
@NeilBradleyMS
@NeilBradleyMS 2 года назад
Hi Dade, it's great to hear from you once again.. nevertheless I am terribly saddened to hear what MS is doing to your life. Know that I do understand, I too have had to give up my Job (Computer Software Engineer) of 30 years. It upset me greatly, even now thinking about it as I type this message I feel emotional about it. It's through my illness I've had to give it up, otherwise I would still be full time. Damn this illness!! I'm really sorry to hear about your girlfriend, although they say it's not through your condition, secretly in the back of our minds, we know don't we. You will find somebody, someone that GENUINELY cares about you, irrelevant of your illness. I, am incredibly lucky in that respect, as my wife Teresa is always there for me. I'm glad you eventually got the steroids you needed, the theory being they hit the inflammation hard where it is needed most. I'm hopeful that you will regain a lot more control in your hands Dade, this must be very difficult for you. Your not alone with feeling quite depressed, it's how this illness makes us feel isn't it. Most importantly, if your feeling down talk to somebody about it, share how your feeling, it really does help. I'm about as low as I've been at the moment.. I used to be able to furniture walk around the house, but once again I've had to re-introduce a stick simply to move about eight feet from one side of the room to the other. Simply standing up takes so much energy, I'm scared of the future. I'm not quite sure why you thought you had annoyed me, but of course not! Please don't worry about responding quickly, I totally understand how busy people's lives are, mine not so much now because I'm kind of stuck in these four walls. I do consider myself to be incredibly lucky in that respect though, as we have a lovely home, but I feel extremely let down by my body as it's preventing me from enjoying it. All the very best my friend - Neil.
@NeilBradleyMS
@NeilBradleyMS 2 года назад
Hi Dade, I'm not sure what CCSVI PTA so I've just had to consult with Dr Google. As far as I can tell, it's a procedure to open up veins in the back of the Neck to improve blood flow. No, I've not tried this, but I'm not sure I would benefit from it. I have weakness from waste down caused by a lesion (and inflammation) in my Mid-Thoracic (central spine). Where as my upper body I'm full strength, this is neck (cervical spine) related. But I can understand how you might think you could, having significant problems with your hands etc. You would have to consult a Dr I expect to find out more information about this procedure to see if it would help you.
@Tns85
@Tns85 6 лет назад
Hello! Are you still having back issues with ms? If so what works for you for pain
@NeilBradleyMS
@NeilBradleyMS 6 лет назад
Hi Teresa, yes I’m still having major issues with back pain. It’s one of the biggest problems that effects my mobility, I have considerable pain and weakness in my lower back. My back pain is usually so bad that not many pain meds touch it I’m afraid. However, I use Codeine but more recently have been prescribed something much stronger, Oramorph.
@Tns85
@Tns85 6 лет назад
My back pain is just like that most every day. I can not take most narcotics because of allergy to them. I went to a couple back doctors and they say " there is no evidence that something is wrong with your back other then ms" ugh. Im in so denial that ms is causing so much back pain
@NeilBradleyMS
@NeilBradleyMS 6 лет назад
My theory is because of my weak legs (caused my the MS), my back is compensating. Teresa, the pain is excruciating and pain killers hardly touch it to be honest, but I still try. The muscles which should balance me simply just do not work anymore, I feel the muscles are over stressed which causes the pain.
@Tns85
@Tns85 6 лет назад
Neil Bradley that makes sense.
@Tns85
@Tns85 6 лет назад
I used to run everyday before i was diagnosed and now walking can be so painful. It is great to be able to chat with you about symptoms, thank you!
@pigpink1971
@pigpink1971 4 года назад
That waas sad.
@brittaroth3780
@brittaroth3780 6 лет назад
Hi Neil, my neurologist wants me to get on steroids for three days either, just like you were the past days. It is very interesting to see the ups and downs after the treatments though. How is your walking and stability now? Did you crash after a few days or did the steroidlevel decrease slowly, just as you wanted it? Steroids don't heal anything they only smoothen the imnflammation in the brain or/ and spinal cord and I guess the side effects can be really bad, can they? You talked about a bad taste in your mouth on the second day. Was ist metallic or what? And how about Kalium given with the steroids to metabolize better? Thanks for showing this video! I am really scared, cause it is my first time of getting high dose steroids (I have spMS since 2014), but I think I can manage that, too. My walking is a mess and the pain in my back and head almost kills me, especially during the nights. What helps me with that is CBD Oil. Did you ever hear of that? It is great: four drops under the tongue and that's it with my pain-all gone. Have a good day and enjoy cooler temperatures. I suffer from the heat and have to stay inside when it is more than 23°.Your wife is such an amazing woman, say hi to her! Greetings from Germany, sincerely Britta
@NeilBradleyMS
@NeilBradleyMS 6 лет назад
Hi Britta, Thank you for your message, and I’m glad you found my video about steroids interesting. During the three days whilst having the steroids I was very up. The first day Teresa had to push me in the wheelchair, but the subsequent two days I managed to walk it. At the end of day 3 (Thursday) I started to feel my usual symptoms come back along with pain. On the Friday, Saturday and Sunday I felt REALLY poorly, severe fatigue with all my pain and weakness as usual. However, today is Wednesday of the following week, I noticed yesterday (Tue) I started to feel quite a bit better, my balance was slightly improved and I just FELT better in my mind also. Hopefully this will continue. So in summary, I was very up, then very down and I’ve starting coming back up the level again. Steroids basically slow down the immune response which causes inflammation in the body. This allows he body to start healing and reduce inflammation much more quickly than it would with the immune system at full speed. Sadly it doesn’t last though. For me side effects were, metallic taste in my mouth, rapid heart beat, flushing in my face and insomnia. I can honestly say though, they were mild side effects and I personally wouldn’t stop them from me having the steroids again. Everybody is different though. Britta, trust me I can really relate to the pain in your back. Although I don’t suffer with head pain, I’m sorry to hear you have to endure this. I can well understand your anxiety about having strong steroids, it’s a big thing to consider. You may react really well to them. My first lot of steroids across three days was in 2013, I had all the side effects I mentioned earlier. Then, AMAZINGLY after ten days or so I noticed I was starting to regain my balance. It was incredible, because I was in a bad way. You may have a similar positive reaction! I hope that you do, should you decide to go for it. If you do decide to have the steroid treatment, please would you let me know how you get on, I would be very very interested. I am taking CBD Oil myself, I’m not quite convinced it’s helping me yet but I keep persevering. I’m taking an 800mg strength. You can be sure Teresa reads absolutely every comment on my channel, but she leaves the responding to me😊 But thank you, she did read your message. Thank you for watching the video Britta, I’m so pleased you enjoyed. There plenty more where this one came from if you have some time (over 50 to be precise). Great to chat to you, and sending those greetings right back to you, from the UK Good luck with the treatment, should you decide to have it.👍👍
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