27.05.2021 CONSULTANT VISIT: Immune System is back!, Signing for Rituximab, CT Scan, Chronic illness
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- čas přidán 6. 06. 2021
- #neuromyelitisoptica
#nmo
#multiplesclerosis
#chronicillness
#pain
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▶︎ 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...
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▶︎ BEFORE and AFTER IV Steroids - • CHRONIC ILLNESS DAY IN...
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🤒 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)
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▶︎ Molly's VLOG - • Molly's Vlog
▶︎ Birds and Animals - • Birds and Animals
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I almost cried when Teresa was showing her new hairstyle and you were giving her beautiful compliments.
And the way she calls you darling is so sweet.
My husband does the same thing
Ahh bless you .. I can honestly say we are the same on camera as we are off camera. From the very first day we met, we clicked and never really looked back. It was a difficulty journey getting to where we are now nevertheless, very bumpy. But we stayed strong, and never ever have a crossed word. 🙏💕
Oh gosh Neil, I know exactly what you mean about it being hard to be happy when our bodies are working so hard against us! None of us wants to be a downer, but sometimes it is just too difficult to be cheerful. Your hair looks amazing, Theresa!
I ♥️ Teresa. She’s such an angel and her hair makes her look even more beautiful! Super gorgeous lady!!
Anyway it’s so nice to hear from you, Neil. God bless you! 🌻
Thank you, you are too kind. Xx
Thanks Patrick, I couldn't agree more !!
So nice to see you both and Theresa’s hair looks beautiful! The blonde looks so pretty on you Theresa. Your videos always brighten my day. Thanks for the update and hoping your next infusion goes well and you can gain some strength back Neil. Glad the doctors are narrowing down your diagnosis. Sometimes these things take a long time to narrow down which I am finding out myself as well. You’re so fortunate to have Theresa by your side. I wasn’t so lucky when I got ill and ended up in divorce. Theresa you are an Angel and you two are the cutest couple ever. Take care guys!🤗😊🌺🦋💓
Hello there, lovely to hear from you again as always. I’m so very sorry to hear about your divorce once you became ill. That’s so unfair isn’t it, whatever happened to “in sickness and in health”. Thank you so much for your lovely words and kind message. I know you yourself have surgery coming up on your back to remove that little nasty, we are thinking about you regarding this. Take care. 💕🙏
Thank you xx
So good to hear the update! Teresa , I’m going to use that line , “It’s the Law” , next time I want a new shirt or jeans.
Ha ha she uses it all the time Jayne.
That made me laugh very loud, go girl. Xx
@@beebabuntin Seems a lot of people like this message, it has several likes so far 😎👍
Update...As I was ready to hit the Amazon order button my hubby said , more clothes? I said yes, It’s the Law! 🤪 We both laughed! I will think of you Teresa every time I buy clothing.
The new top looks really gorgeous on her 💜
Thank you xx
Hi Neil&Teresa,always a pleasure to pop in. No,I could tell you were still very small and understand that many of our pain is not seen. Yes,Prednisolone are steroids and they always give me moon face. I'm so glad that wheels are starting to turn. Teresa,cute hair looks amazing on you. Neil,wonderful news that you are having the CT scan they will have a clear view of what is taking shape internally. Keep us up to speed as you feel like it. Sending you both positive vibes!
Thanks Avril, appreciate it. I hate the Prednisolone, I’m currently on 25mg (was on 40mg) but I look in the mirror or see myself on a video and I don’t look “right” if you know what I mean, I don’t look like me. Thanks for your kind words, Teresa reads all the messages. I hope all is well with yourself. 🙏
Thank you xx
Your hair is fantastic
Such a lovely couple!! Never seen anyone like you before, staying happy and positive despite all the negativity that life throws at you! Much love ❤️ (Teresa looks stunning!) 😻
Thank you Fatima, much love to you 🙏💕
Hey guys, I haven't commented on the last few videos but rest assured I am viewing them. It's funny that your conversations (bantering?) are a mirror of my wife's and mine! Neil, you're no different than the next guy. Take care. PS, Teresa you look lovely.
Thanks Lee, always nice to know you’re around still watching. Yes I think you’ve mentioned the similarities of banter before 😄 👍
❤️
Lovely to see and hear you both again! I’m glad your specialist was helpful, and that Tree filled her in with the details that you are probably so used to having and coping with that you forget to mention them yourself! (Also, being a guy Teresa ...yes it’s normal! 🙄😊. As David doesn’t speak much Portuguese I tend to fill in the details for him too! ;) )
Tree I just guessed you were going to be wearing your hair! Wow! You are always beautiful but that blonde hair is really lovely! It somehow shows off your eyes! I also am jealous of your lovely cat top!
Much love from us both in Portugal 🇵🇹! 🌸🌺🌸🌷💖🌷🌸🌺🌸
Hi Susan, nice to hear from you and thanks for the comment. Yes she's been treating herself, but as I always say I can't put a price on her! I do tend to forget to mention things to the Neuro, then when I've left I think "Hmm should have said that, or this". Teresa does sometimes mention how down I get (because she worries) but all they'll do is start me on the Anti-Depressant route and I'm really not into that, well I don't believe I'm there just yet. Much love - Neil & Teresa 🙏💕
You both seem lighter. You (Neil) are more focused. I can tell you are not feeling wonderful BUT your focus is much better and emotionally you are both lighter. Teresa your hair is DARLING!! I love how you two look at each other! Just mushes me out! I've been off sweets for over a year... you are my dose of sugar! You have steroid face yes. But what I've noticed in this video is you have clearer eyes. You are less... I dunno... stressed? More relaxed perhaps? You look good. Not haggard like you had been. It's wonderful to see!! Hugs to you both. I love you!
Hello J, nice to hear from you as always! Thank you for your kind and lovely message, both Teresa and I read all the comments. Yes, she's just so happy with her new Hair .. super pleased we mush you out lol, as for haggard .. hmm well lol I'm kind of inclined to agree with you there (on occasion ha ha). I was a little bit more chilled on this video. Much love and hugs to you also J, take care now - Neil & Teresa 🙏💕
@@NeilBradleyMS any time we can chill is good. Our temps here are reaching 41.11 this weekend OMG UGH!!!
Thank you Neil and Teresa for doing these videos . I have Lupus which is also an autoimmune illness and I am so grateful for you sharing your story as I don’t feel quite so alone with my weird symptoms that are so difficult to explain to others. I go to the QMC in Nottingham for my treatment.
Hi there, sorry to hear about your Lupus, I too have been going to the QMC for about 35 years, to the Dermatology dept. I have been going about my Alopecia. I love getting new hair. Just in case you haven’t seen earlier Videos, I was married in Dec 1982 to my now ex husband and got pregnant the following Feb. My hair started falling out , the rest is history. Neil has NEVER had an issue with this, he loves me for me. Enough of my rambling..... you can wake up now lol. Xx
Hi Rosemary, I’m so pleased to hear our videos are a comfort to you and they make you feel not quite so alone. A message such as yours really does inspire me to continue with the hard work we put into the channel. As Teresa quite rightly says, we too are very familiar with the QMC, it’s like a mini citi isn’t it. I’m also familiar with Lupus, and I’m sorry you’re having to deal with this, and no doubt the horrible symptoms that go with it. Educating people about your condition, how it effects you and makes you feels has got to be one of the most difficult tasks ahead of anybody suffering with a hidden illness. Take care. 🙏
My husband does the same thing!!
He's battling Bladder Cancer. Never admits how he really feels.🤷♀️🥺
Prayers for you both.
Sending healing thoughts and prayers to your Husband 🙏💕
Hi Neil.
Thank you for your kind words.
I am like you also analytical in lots
of things and am an excellent lay researcher, but for us as a family I do it due the sheer amount of errors in all our care over the years.
I sincerely believe my son is progressive and it was mentioned back along he may be. But I feel he is in the extremely rare 5% of progressive relapsing or NMOSD.
But my son has given up with clinicians now due to really bad experiences and is psychologically beaten up by their dismissive insensitive comments.
I am now skirting round them by going direct to clinicians who specialise in central pain syndrome, and got the diagnosis as I thought all along but he was told it was anxiety, walk and all your pain will go away. My son cannot walk or stand or sit upright for more than 2 - 3 mins and has an EDSS 6 from the beginning and is housebound and relies on a power chair to medical appointments and uses it in the home to if needed.
When a patient has such awful diseases as this they need kind people behind them good listeners and clinicians also prepared to research if they do not know about a rare symptom such as Autonomic dysreflexia, POTS etc which my son can suffer from and more, instead of saying its anxiety all in your head when the patient is really ill.
I will continue to fight for my son as long as I am still breathing with these medics.
I sincerely wish you all the best Neil and ask your lovely wife Theresa to watch you like a hawk while you are having Rituximab and your NMOSD in general. My son has thrown some major stuff at me that's rocked him and me to our core. I have severe impairments as I have spinal cord damage so very challenging here the last 6 years.
Take care god bless.
It is always good to get an update from you two. Looking good today! When you were talking about how hard it is to keep spirits up when your body is failing...boy did that resonate with me. It is hard to keep my spirits up sometimes. I have multiple chronic conditions. Currently, I am dealing with quite a bit of nerve damage in my left leg and muscle weakness. I try to be thankful that my driving leg is holding for now, but it was quite depressing at my last Drs visit to realize just how much my leg has deteriorated. I keep trying to stay mobile though. I use a stick now most of the time for balance. They don't know what is causing my nerves to die and that is disheartening because they don't have anything to do about it besides pain medicine and physical therapy. I appreciate your channel and thanks for updating us. You both are beautiful, kind people.
Hi Lorien, yes indeed! It really is so difficult to keep your Spirits up and be Happy when all your experiencing pretty much 24/7 is pain, pain and more pain! I also find educating people about how you're feeling is extremely difficult when they have no mobility or pain issues. I'm so terribly sorry about the nerve damage you're having to endure, know that I understand.. even now as I type this message my legs are screaming and hissing at me. Do what you need to do though to stay safe, and if that means using a stick then so be it, this is why I do too. I often say to Teresa, I need to stay safe and don't need a broken leg (or worse) on top of everything else. Thank you so much for your kind words, and I (we) very much look forward to hearing from you again. Sending kind and healing thoughts to you - Neil & Teresa. 🙏💕
Awwww Teresa ... Love the hair! Really suits you ❤️ You said it was expensive? So it ought to be!! You deserve the best!!!!
Neil it's lovely to see an update & that things are progressing nicely.
I'm a bit under the weather, myself, had my 1sr Pfizer Vax yesterday, but thankfully no major side effects (touch wood).
Love to you both 😘😘
Thanks for the update. You are You Tube Stars in my book! Teresa your new look is fabulous! Neal, you look great also!
Thank you so much Kerri 💙🙏
Looking beautiful, Teresa! God bless you both...love seeing you both on camera.
Thank you so much Marina 🙏👍
I’ll have that Blue Peter badge! You are BOTH awesome. Theresa I LOVE your hair it looks amazing. Good luck with the CT scan Neil and keep us posted on the MRI findings. Lots of love from Norfolk 😘
Hello Carole, so happy to hear you have the badge! Thanks for that 👍 And thank you also for your kind words, both Teresa and I read all the comments (Tree says thanks about the hair). Ahh Norfolk - nice to know where abouts you are in the world. Take care, much love 💕
Thank you xx
I'm watching with my phone on the other sopha like your both sitting in my lounge 😆
Cool 😎 I’m just sitting outside on our patio at the moment doing absolutely nothing, well apart from answering comments with my phone in the ☀️
You two sweeties are so adorable
I must say Teresa that your new hair style you shared with us before is amazing 🤩
Wishing Neil the best with the newest treatments he’s on and love your ever bright cheerie take on how you take the highs and low moments in strides 👍🏽😊
You videos of you both lighten up my days mates 👍🏽😁🙏🏻 many thanks
Good morning Mellie, and thank you for your kind words. Both Teresa and I are super happy that you're getting so much joy from watching our videos. Messages such as yours inspire us to keep producing content. Thank you.
Hello you two beauties , Mellie here again . I just emailed with friend that is an energy healer that my childhood friend introduced me to years ago as she gets energy healing from him as she moved to UK decades ago from Vancouver where we originally met
He helps her often if she not feeling her best and since she introduced me to him ive been getting shot of his energy healing when i get low on energy ect re m s . Symptoms ect
I mentioned to him that ive gotten to know you both online watching your videos and would like Neil to find help for his pain ect
He told me to ask Neil if he would like to phone or emai him to talk about what he does for others and then see if you would like him to give you a go with the energy healing he does in case you want to ask him about what he does
Feel free to ring him he said his name is Andy 011 44 7527 829357
Or there’s this 01326376707
Andy Reeve
Please mention melody (Mellie) from bc Canada gave you his number to have a chin wag about energy healing he does 🇨🇦👍🏽🙏🏻🤔
Hope today’s been a less painful day.. im waiting to be on ms drug called Mavenclad .. Hopefully it works better then the heaps of others ive tried over last 20 years 👍🏽
Hugs to ys both
Mellie
Hello you two , thanks for the update. Good luck for starting the rituxumab Neil , I hope it helps you. I can completely relate to the comment you made about it being hard to stay upbeat and happy/positive when dealing with chronic health symptoms. Love the new hair Teresa, and you're right a girl can never have too many clothes :))))
sending virtual hugs, Grace x
Great to see you and Teresa again Neil. I hope good things happen for you with this new medication. My fingers are crossed for you and as always your both in my thoughts and prayers.
Yes thanks for the update.
Theresa looks good with the new hair. Blonde is a good colour for her. Love the top as well🥰
I am glad you can get a CT scan. Looking forward for the result of that.
Love you guys💜💜💜
Thanks Lita, we really appreciate your kind words. ❤️💙🙏 We will keep you up to date.
Thank you xx
Thank you for another amazing video. You are such beautiful people inside and out. Teresa you look absolutely gorgeous as always! Love the new top. I am a total cat lady. Happy to hear things are coming along with your treatment Neil. I look forward to your next video.
Thank you so much for that Gwendolyn, you're too kind! 🙏💕
Theresa, your top design looks like Molly on the front. She is wonderful and so so so supportive. You look good and in good spirits. And so new drug for you and it should be good because I see a lot of people on this drug at the center where my neurologist resides. Love you two and I pray every day for you brother. Every day to stand with you and keep on keeping on. Your hair looks great Theresa. Love you guys so much. You make me happy.
Thanks Bodhi, you're so very kind and it's lovely to hear from you as always. It's inspiring to know you've seen a lot of people on this drug. Much love 🙏💕
Was just thinking of you both yesterday and here you are 😊 you both really make my day and lift my spirits. Looove Teresa's top, I'm a cat lady so will be looking for a matching one 😹 keep on being you, both of you ❤️ sending love to you both 😘
I think it's awesome we make your day and lift your Spirits Lynda, messages such as yours really inspire us to keep producing content for the channel. Sending love right back there to you 🙏💕
Brilliant top, Teresa,.
And pretty decent news today, Neil.
And ABSOLUTELY, you need more subscribers because as much as your channel contains your excellent personalities and characters and telling-things-as-they-are phenomenon (like a good novel does), you are bringing a sort of education for the medical profession - as well as those of us who are going through MS with you. Basically, your channel is extremely important for BOTH doctors and patients.
Thanks Elaine, I really appreciate you saying that. I would like to think it does help both sides, and is very educational. I hope you’re keeping well yourself.
Yes it is guys
Love the top Teresa. I have a black cat named Winx. I have a video on CZcams of her. You both are very lucky to have each other. Neil you're very lucky to be able to get medical care and I hope the new medication helps ( not going to attempt to spell it) I can't get the medical care I need and I don't have pain medication except Excedrin. I have Elhers Danlo Syndrome and my PT suspects I have MS too, but there's not a neurologist in town that takes my insurance. The nearest neurologist is 2 hours away and I can't get there because I don't own a car and my insurance doesn't pay for medical transportation. You're also very lucky to have someone to help you through all this. Some people don't have anyone at all. Teresa, I saw the short video you put out today and I want to let you know how special you are. To be able to continue to smile and take care of Neil and yourself throughout all you both have been through is a testament to your strength, perseverance, and resiliency. You are a super hero. I can tell how much you both love each other and you both give me a bit of hope to get through another day. Btw Teresa I love the new hair. Hugs to both of you.
Thank you Patty so much for your lovely comment a kind words. We've just checked out your video of your beautiful cat, Winx is absolutely adorable. I'm sorry to hear you're struggling so much with your condition. We are very lucky here in the UK to have our National Health Service (NHS) so we don't have to rely on un-reliable insurance companies that love to take your money, but don't like helping you in times of need. So sorry about this. Sending love and hugs 🙏💕
U two are the sweetest. I love when u give updates. Keep staying positive!!
Thank you both for the update. Lovely couple, absolutely lovely. Teresa, the new blonde hair do looks wonderful! Love and hugs to you two. ❤️❤️
Thanks Martha, really appreciate it! Sending much love and hugs right back there to you 🙏💕
Good look with your Treatment I am waiting ocerlizumab as I had toQualify for it I am just waiting
Thanks Dean, good luck with yours too!
She looks beautiful! Sending love and prayers to you guys!!!
Hey Neil and Teresa I just checked out your comment back from the last video
Thank you for the lovely comment back❤ I think you do look better than some last videos but you look fine and Teresa I
Will say WOW 👸 I like your hail cut and color! It fits you perfect! And I like your black cat shirt I want a black cat but I can't because I have two cats one gray and one an Orange Tabby Cats but I would like one a black one! Just remember I and Logan are praying
🙏❤🙏 for you both!! Amanda and Logan
Hi Amanda, thanks for your lovely message. Teresa also reads all the comments so your kind words will be taken on board. Thank you. It’s nice you have cats, we also had a cat Molly (in my CZcams profile pic) and a dog Bess, sadly a few years ago though they grew elderly and passed over the rainbow bridge. Our beautiful animals simply don’t live long enough do they. I hope you and Logan are well. Take care. 💕
❤️
@@NeilBradleyMS Hey Neil and Teresa
I also had a Jack Russel Dog she was 18 years old she is in Heaven too she was the best dog very spunky and Wild!!
You both take care ❤ Amanda
Hello Neil I hate to bother you I know you are recuperating from your first IV treatment ( I assume at home) I was just wondering how you are feeling having the first IV treatment? ( If you can tell it's working or is it too hard to tell if you feel anything from the IV treatment? Because I know it is only a couple of days that you have had the IV treatment but I have been 🙏🙏🙏 Alot for you that it is working for you my are fingers crossed 🤞( It is hard to tell but the fingers are crossed!!) ❤ Logan hopes you are feeling better too!! If you can't message me back that's ok
Hey Amanda, of course I don’t mind you contacting me and you’re never any bother. Please don’t ever think that you are. I’ve recently only be acknowledging comments with a heart ♥️ because it’s simply been getting too much to answer everybody. I feel bad about this, but it simply takes hours and hours now the channel has grown.
Thank you for enquiring, I really appreciate it. On the day I’ve taken a fair bit of footage using my phone, and I’m currently in the process of editing it up into a video which, I’m hoping to post soon.
The infusion went well, and it was uneventful with no reactions fortunately. Im still not feeling well though, but it takes 4 - 6 weeks to kick in. I’ve also got to go for part two on the 29th June. So as I’ve been saying to people, only half the army has been delivered to do battle with my rather faulty immune system. 🤦
It still didn’t deter Teresa and I from having our favourite Tesco café breakfast this Friday morning which, is where I’m currently sat writing ✍️ this message to you using my phone.
As always lovely to hear from you, take care. And, keep your eyes peeled for our next video which documents the day.
Neil & Tree 💕xxx
Oh the hair is stunning 😍 so Lovely to see you two smiling . sending hugs and love as always ❤️
Thank you so much, much love to you also 🙏💕
You look so much happier
Thanks Michele, feel even happier if the treatment works it’s magic and I get some mobility back. So tired of not being able to move even a couple of feet without almost falling over. 💕
well said about pitfalls. Funny when we have our health we take it for granted.
You’re so right Tom, we think nothing of just taking a walk but when suddenly it’s not possible, it’s a whole new ball game. I hope your keeping well.
The sandwich picture of u Teresa is beautiful
God bless you both Teresa bless u 🙏🙏
Thanks Dee. 🙏
Your welcome
Be very interested to find out more about the Hilar lymphadenopathy, I just had a very quick Google to no avail, I'm off for a ct Angiogram day after tomorrow, bit nervous tbh. Its been a bit of a faff, sorting it out , as the metoprolol used slow my heart for the procedure isnt suitable as I've previously been asthmatic so I've been half the day chasing the cardiologist then g.p. then ct department and back & forth to get a different , hopefully more suitable medication 🤞 & I had got another 24 hr blood pressure test booked for tomorrow but that is now later in the week as the meds would obviously changed my natural blood pressure readings. ( doctors & hospital departments been very helpful tbh ) but I had to be persistent ( but polite) & some of their literature/advice leaflets could do with a more detailed update to inform of what to do 'before' the ct scan,like no caffeine & how much liquids etc. instead of having the added stress of chasing.
I'm also a bit worried about the contrast dye and bad effects heard some people have had, and worried about my gut instinct, a couple of instances where I should have listened to it & didn't, and now greatly regret making those decisions, but.....fingers crossed.
You seem much more positive today, I've got everything crossed for you & your new treatment, I do say a little prayer for you both amongst my long list at night, I'm not really very religious tbh but my Dad always swore of the power of prayer and he was a wise chap, and it cant do any harm can it.
( Teresa your hair is beautiful really suits you 👌💓 & yours ain't bad either Neil 😉🤣😘) what did you have at the mortgage cafe? Hope it was nice.
Did you bump into Mr Phlegm 🤧 🤢🤢🤢?
Lots of love both xx
Hi There, I've also Googled "Hilar lymphadenopathy" but nothing really much shows up, only that it's some kind of fungal infection etc, but not sure why they're looking for it with me.
Sounds like you've been having fun with back and forth between different departments etc, can be frustrating can't it .. I've been there.
From a personal perspective I've never had a reaction to the Dye, but that doesn't mean to say I'm not anxious about it which doesn't help. I don't like the idea of it being injected, but it does help I suppose with a clearer image.
Thanks for your kind words and prayers, Teresa and I do hope your visit for an Angiogram goes smoothly and with not complications.
Take care - Neil & Tree 🙏👍
Of course I’m subscribed. 😊🌸 much love from Connecticut, USA.
Good job!! lol So pleased to hear it Mary, lovely to have you on board. 🙏💕
Hi both…. Love that T-shirt!! My kitty’s definitely approve 😸 The hair looks amazing too 😊 Great to see you looking more upbeat it’s inspirational considering everything you go through. Love the term mortgage cafe haha but who can resist a costalot coffee ☕️ keep smiling guys and I’ll look forward to the next update . Positive healing to you both 💙✨🙏🏻
Hey Stuart, I don't believe we've chatted before!! Thank you so much for your lovely comment, we really appreciate it. So you're a cat person as well, nice! Oh yes, the "Mortgage Cafe" lol that could have been one of my phrases ha ha, it's crazy what prices they can get away with charging these days isn't it, but hey ho as you say it's a treat. Thank you for your healing thoughts, very gratefully received.. sending some right back there to you 🙏💕 - Neil & Teresa.
@@NeilBradleyMS Hi, no we’ve not chatted as I’ve only recently discovered your channel but I’m glad I have as I’ve been really enjoying it….. in a way that sounds awful…. I obviously don’t mean I enjoy your suffering 🙈 but it’s just interesting to follow your story and gain insights etc and the banter between you and Teresa is hilarious of course 😁 Yes very much a cat dad here too, I’ve had kitty’s for as long as I can remember, it just wouldn’t be a home without a fur baby!! Hope you’ve both had a good day today…. Blessings to you all ✨🙏🏻 Stu
You seem quite a bit happier Neil 👍 I really hope the retuximab (spelling?) helps you.
You’ll hopefully be at Wimbledon next month going against Federer!! 😀👍
Thanks Ian😎🎾, yeah not too bad .. I always try and remain upbeat despite everything. Difficult though at times, which I’m sure you can appreciate yourself. Hope your keeping well. 👍😎
Ooooh I love the top
Hi
So the questions you could ask your clinicians Neil before you start your new treatment is " what is the risk to me of disease reactivation, and incruing more severe disability once the DMD stops for whatever reasons, and will the reactivation of the disease be more severe a d aggressive than before I started Azathioprine and Rituximab?".
Best wishes and good luck
Oh what a lovely couple. Thank you for sharing.
Thank you Sharon, for your lovely message. 🙏💕
Love the cat shirt loll
Omg Teresa I want your top you gorgeous lady 😘😘
Glad you like it Sue. 🥰
Haven't heard from you for a while now, praying that you are both well. Hugs and prayers for you both.
Thanks Kathy, We’ve been better if I’m honest. Just taking things day by day. Many hugs and prayers right back to you, I hope you’re keeping as well as can be. 🙏
Isn't she lovely, beautiful person.
Thanks Paul, indeed she is .. I really am very lucky. I hope you’re keeping well.
Good to hear from you both. I take my mum to doctors appointments. I am a bit down I am only taking pregablin which I am putting weight on with it ☹️ x
Hi Julie, ahh I can understand you being very down. You want something for the pain, but obviously don’t want to gain weight. Unfortunately weight gain is one of many side effects of drugs. You take care. 🙏💕
@@NeilBradleyMS 🤗
Very pretty
Neil tell me how Teresa diabetes? A1 number
Hi 👋😌 so pleased you guys are so sweet together .I do that ? Lol how are you? Me fine when it's sh@£#t!
You are so strong ...it's scary ..kinda glad to hear I'm not the only one counting hours down till next dose of pain killers ..
Your channel is so helpful and always nice to here from you both 😍💖💪 big hug from your friend Gitte hug Teresa and hug for Neil
Thanks Gitte, it's weird I never even used to take a Paracetamol for a headache years ago, never took tables of any description, but now like I say I count down to the next dose of pain killers and then I don't feel they've really do much. It's no fun. As always lovely to hear from you Gitte, sending love and hugs 🙏💕
woopee........great news Neil. You two are my go too when i want a giggle your so sweet together. women have to buy clothes it is the LAW ha ha, love it. xxxx
I take Actemra shots every week for Rheumatoid Arthritis. My immune system attacks my own body.
Hey there, Rheumatoid Arthritis is in fact an Autoimmune condition. The Rituximab treatment I’m having soon has also been used to treat it (so I’ve read). You’re not alone, my immune system is also attacking me.. unfortunately it my spinal cord!. Wish it would get it’s act together 🤦 You take care. 💕🙏
i thought of you today when I was filming my video in my car. I used your expression that isn't a common USA expression... I was coming out from the grocery store and I was kicked in my butt tired.
Would that have been "Cream Crackered" then I wonder Michelle lol
@@NeilBradleyMS oh that is a good one too. i used "knackered"
@@michelleslifeonrepeat Ha ha Michelle, yep "Knackered" is yet another one lol
Hi Neil and Theresa,
I was very concerned about you Neil and have actually been worrying about you, when you told us about what your neurologist was said re your immune system had come right back up and was to high. She asked you " have you had a cold etc".
Your neurologist possibly doesn't know about "rebound disease activity after stopping a DMD" which can happen in MS, NMOSD, Parkinson's etc.
Has she or the Walton centre not discussed this with you and the ramifications of stopping Azathioprine, Rituximab and any other DMD's and rebound disease activity now and in the future? If not they damne well should have if they know about it? Remember this it is you that suffers no-one else.
It concerns me deeply that she clearly did not have the knowledge about your lymphocytes going sky high and your symptoms worsening due to stopping the DMD. Your body is in attack mode, same with my child.
Please read pubmed.ncbi.nlm.nih.gov/30577778/ this explains clearly about rebound disease activity.
I have known about this rebound effect with DMD's for a very long time, and countless medical articles and patients getting into severe difficulties as in accute relapses and increased disability when these drugs stop or get changed for whatever reasons.
I come from a deeply concerned and respectful place for your welfare and others out there. Please please do your research so you can make a fully informed choice. Neurologists have very limited knowledge in neurological diseases and the drugs. Yet patients and their families hang off their every word.
Go in with your eyes wide open Neil it's absolutely critical.
We have had 4 neurologists at Walton and they have been awful. I have butted heads with them and challenged them many a time because they think they know it all and they have repeatedly disregarded any other accurate research I have presented saying it's all in my child's head. I have proved them wrong on every occasion. A 5th neurologist at the Royal was equally bad when my child was severely disabled and told to just walk and he would recover. Oh if only it had have been that simple with what was disabling permanent damage.
The only person that has my childs back is me with these people.
It sounds like you have rebound activity now due to your worsening symptoms and raised immunity and stopping DMD. But I am no medical expert here.
If I can find the other links regarding this I will post them.
My adult child says to me who is very ill and disabled from day one and is very drug sensitive and has drug allergies " the MS TM is bad enough, I don't want more damage, side effects, risks from drugs and worse rebound disease activity after they are stopped and worse quality of life. I respect that as it is his personal choice.
I hope this opens your eyes that bit more, so you can ask your clinicians the right questions for you to make the right choices for you no-one else.
Best wishes.
Thank you Jessica, for your extremely detailed and informative message which, I have read very carefully. I agree with you, I do believe that I am re-bounding as a result of coming off Azathioprine. Strangely I didn't realise Azathioprine was in fact doing something, until I actually came off it! My immune system has to return to normal levels before they will start the Rituximab treatment otherwise I could be left with no immunity at all what-so-ever. I do understand why, but CLEARLY I am very aware my immune system is now causing inflammation once again in my spinal cord because my mobility is rock bottom, and my pain is through the roof!! I really appreciate your kind thoughts and concerns, I am however all too aware of what's going on (unfortunately). Part of being a computer programmer all my life comes the analytical side of me. I even confirm my theories with my Neuro, because I like to know how these drugs work.
I'm am terribly sorry to hear about your son having to deal MS & TM. I'm not sure how far back you've watched my videos, but I was also diagnosed with TM in the very first place back in 2007/08, then it changed to MS in 2013, and then NMOSD most recently. I do hope your son is managing his condition ok and coping with the symptoms.
Thanks again Jessica - Neil.
A1C?
I’m not sure but it is quite low as we manage her diabetes very carefully.
Your puffy face looks good cheeky chops 😁
Ha ha, I’m not quite so sure lol 😆
How guys are doing?
Hi Dee, I’ve been to hospital all day today having my new treatment. It went well and was uneventful. I’m extremely tired as a result. Thanks for the check in.
@@NeilBradleyMS oh my God may the Lord help you also i ask god u be ok
I pray to the Lord I have you in my prayer list may the Lord be with you always I pray and name of Jesus Christ and the holy Spirit amen with my prayers I wish you be okay also Teresa I wish I could do something for you guys give Teresa Much power to take care of you I pray to the Lord always so you one day you'll be able to walk I wish you the best always and always the name of the father amen
Beautiful blond