MERRY CHRISTMAS EVERYBODY, up at 4am AGAIN, oh and here's Teresa!
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- Опубликовано: 7 сен 2024
- Hello everybody, it's been a bit of rush to do this video, the time is now 1:45pm and we've got to go out by 2pm.
If you wait until towards the end of the video, you'll get to see my lovely wife Teresa.
Merry Christmas and a Happy New Year to Everybody, much love to you all - Neil & Teresa xxx
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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)
----- Links to Social Media -----
▶︎ TWITTER: / spookynash
▶︎ RUclips: / neilbradleyms
----- Playlists you might be interested in -----
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▶︎ My Life With Multiple Sclerosis - • (MS) My Life with Mult...
▶︎ Relapses, Steroid Treatment & The Effects - • (MS) Relapses, Steroid...
▶︎ Uhthoff's phenomenon - Heat Sensitivity - • (MS) Uhthoff's phenome...
▶︎ Trying to "kick" Lyrica (Pregabalin) - • (MS) Trying to "kick" ...
▶︎ Molly's VLOG - • Molly's Vlog
▶︎ Birds and Animals - • Birds and Animals
-------------- Music Credits --------------
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Thinking of you and Teresa and praying for you to know God loves you and will hear you call on Him in the midst of suffering. Blessings Frank and Kerri Arceo
Dear Frank and Kerri, thank you for your kind words. Blessings to you lovely people. 💛🙏
Praying that You, Teresa and your Mom are doing better and everything is ok. Keeping you all in prayers. Haven't seen post in a while, miss you guys!
Ahh thank you for your kind message, it is appreciated. No, sadly haven’t posted in a while because my health has just got too bad now. I do hope to again one day though. You take care.
This one's a lot more hopeful to hear about than your last video. And yet, i can see how exhausted you both are. I have prayed for you both - for the Father to help you with all this pain. I know you have wonderful hearts, you two.
Missing you, Neil . I hope you and Teresa are both keeping well .
Not so bad thank you Patrick, Day by day, hour by hour sometimes, have to keep going don’t you. Hope you are doing okay also. 🙏
I hope you are doing okay Neil! Think of you & Teresa often. xoxo
Hello there, just taking every day one step at a time, sometimes hour by hour. Thank you so much for asking, I hope you are doing well. 🙏
Hi Neil and Teresa just found your channel a few weeks ago, you are both amazing. Hope you are feeling ok both. Catherine
@cathylincoln323 Bless you Catherine, thank you, we aren’t too bad. I hope that you also, are okay. 👍
@@cathylincoln323 Thank you Catherine, for your kind words. 🙏💛
Missing you two dearly. Hoping you're both well🙏🏻🫶
Hey there, we're not too bad thanks, but life is throwing quite a bit at us at the moment though. I've got to spend a day in hospital for treatment, my elderly Mum is having an Operation in July, and Teresa is also having a small procedure shortly. It never rains, but it pours. I hope all is well with yourself, or at least not too bad. 💛🙏
@@NeilBradleyMS
Yikes, I guess so!
Prayers for you, Mom and Tree are being sent your way for much improved health after this rain storm🙏🏻🫶
All here is the same with dismissive doctors. All I know to date is that I have "a rare neurological disorder" and "It's never going away" I say..."No kidding Einstein! Isn't it obvious?"🤦♀️. I gave up on the doctors in this state. But I was prescribed a brand new Nitro Sprint rollator Walker🥰❣️. Now I can at least get some walking time in without fear of falling😃
It's so nice to hear back from you, thankyou😘. Stay well, enjoy your garden time and your beautiful little getaway shed and stay in touch; because we love and care😘😘😘
@EMS-hp9tf That super good new to hear with regard to your new rollator which is allowing you some much deserved freedom. Fantastic!! Yes, now starting to spend most afternoons in the Summer house, 🏡 now that the weather is warming up a bit. I’ve about gave up with the Dr’s also, I don’t believe they know what’s wrong. I no longer agree with their diagnosis, what I do know is I’ve got myelitis for sure, which is inflammation of the spinal cord. We just have to keep plodding on don’t we. Xxx💛💛
Merry Christmas, Neil and Teresa. Have a nice day at brother's place, you guys. So nice to see you, Teresa. Sleep when you can. Naps help, don't they. 🎄❄love to you both.
Hi id just like to say thàbkyou for sharing your MS and life journey...inc4edible how similar our life's have been...i hop3 you are doing okay at the moment...well after 6 years of severe ms symptoms im finally seeing the neurologist Mon 29th (less than a week away)🎉following an MRI scan which lasted 80 min instead of the 25 min quoted😅.
(never left a comment on RUclips until now😊)
Thankyou very much
jon
My apologies for not spotting this message sooner. I do hope your appointment went well. I too am used to the very long MRI scans, not the best are they.
I’m very sorry to hear you’ve been having severe MS symptoms, definitely not good. Know that you’re not alone, I too consider my symptoms severe. I can no longer walk unaided 😢. I Have to rely on my mobility scooter for everything now.
I’m up pretty much every night because of pain. Quality of life is just in the bin to be honest. I do hope you’re not as bad a myself. I’m interested to know how you’re coping and what symptoms you’re having to endure. All the best - Neil
Hi Neil and Teresa! You have both been on my mind recently. Checking in and hoping to see you in the garden again soon.
Hey there, good to hear from you and thanks for the check in. We’re not too bad thanks, just plodding along. A recent hospital visit for me to see my consultant (routine annual appt) seemed to be a bit of a waste of time, I just continue on the slippery slope, but I’m kind of used to that. Using my scooter a lot more now, it’s a case of having too. How are things with yourself?
@@NeilBradleyMS glad things aren’t too bad. Good on you for using the scooter as needed. I fully expect to see you scooting around cleaning up the garden. I am doing well thanks! March is my melancholy month. Here in Connecticut we get a tease of spring and then it goes right back to cold and grey. Not to worry though, I know I will bounce back in April. 😉
I like the way you described the muscle in your leg as having an argument with itself- that really is exactly what spasticity feels like! Also, muscles screaming with pain. I'm praying for you both! Have a blessed Christmas Day!
Not your greatest but still glad you could make a video and give us a smile, so happy to see Teresa again. Really hope pain and spasms will give you both a break soon. Big hug
So happy to see both again. I hope you had a lovely holiday.🙏❤️🤗
Hi Kathy, thank you.. and it’s nice to hear from you also. We did have a nice Christmas and new year. I hope that you did also. 🙏🦋
Glad you are enjoying interacting, I am too, obviously not 5hat you have struggles though.
Great to see you both, sorry that T is in such pain, hope you had a lovely Christmas day xx
Prayers for comfort and pain relief! 🙏
Thank you 🙏
Neil you and Teresa are the best!!! I have seen your other two recent videos Neil. I did thumb them both but I did not comment. Neil I also wake up around 1:00-2:00 am.
I dislike getting up too. I hope your issues will get better for you. Teresa I hope you do feel better. Merry Christmas and have a Happy New Year to the both of you and your Family. Love Amanda & Logan.
Dear Neil & Teresa, Merry Christmas to you both ❤❤ Susannah
A Blessed and Merry Christmas to you both and to all your followers!!!
I hope you and Teresa have a lovely day today, Neil! Not the best one for me and my partner but we can laugh about it now. Got lost and then locked in a car park in a city centre. Had booked Christmas lunch out and it wasn't very nice at all, despite costing a fortune. Went to a beach after and a from above timed it droppings perfectly to land on my head. Ended up buyint takeaway pizza for Christmas dinner as it was the only shop open. Never mind haha
Hugs and Merry Christmas!! I hope you enjoyed the day! It was good to see you both! I'm sorry you are both having such pain. I hope something can be done to help each of you. You don't worry about a thing on my notes. I know you are battling and you don't need to fret over leaving a heart for me. I just love you guys and wish the very best for you both. Hugs.
Lovely to see you .Wishing you both a very merry Christmas 🤶 🎄 🎅. Sorry your not having much fun health wise ...Here's to a healthy new year for us all ❤
Prayers for you both!
Merry Christmas to the both of you. It was nice to see the both of you. I am so sorry for all of the pain you are both going through. Its not the best feeling at all. I am always waking up in the middle of the night and I don't like it one bit. I try to stay as positive as I can but we all know how hard that can be as well. I hope you both have a beautiful holiday season with your families. I hope you both feel better soon.
So good to see you. Merry christmas! And a good year for all of us, struggeling with MS and our families. Katja
Turn to Jesus He loves you, He is the healer of the body And savior of the soul, There is True Hope in Jesus, God protects Psalms 91, He is the God of miracles Acts 2:21 And everyone who calls on the name of the Lord will be saved Jesus alone saves Trust Him with your salvation John 3:16
1 Corinthians 15 1-4
Moreover Brethren, i declare unto you the gospel which i preached unto you, which also ye have received, and with wherein ye stand
By which also ye are saved, if you keep in memory what i preached unto you, unless ye have believed in vain,
For i delivered unto you first of all that which i also received, how that Christ died for our sins according to the scriptures
And that He was buried, and that He rose again the third day according to the scriptures, Take care
❤ happy Christmas and sending loads of love to you both and I am going to send positive healing energy for the New Year so you are both pain-free XX
Hi Neil and Theresa. Happy Xmas and all the very best for 2024. 🙏 Ian
Lovely to see you both, I hope your day is going well, it’s a comfort to have the gaming world ability to focus on, I wish I didn’t have the light/screen sensitivity as well 😞because I know how much it can help you through, Merry Christmas 🎄 xx
Merry Christmas to both of you. Peace.😇🤗😊🎄🎅🎁
Merry Christmas to you both. Lovely to see you both on here. Hope you both had a nice day at your (Neil's) brothers. It is Boxing Day now so Teresa, we are counting down to Christmas 2024 😁😁 Take care and hope you both can get some relief from being in pain. 🎅🎅☃☃🎁🎁🎄🎄
Thanks Mark, please don't encourage her lol. I was more than horrified to see the Amazon basket had already got Christmas decorations in it to order for NEXT YEAR !! I just shake my head in disbelief!!
Merry Christmas Neil and Teresa! ❤
Happy Christmas! I’m sorry my wondering in the last video (that I commented on last night…) came true 😢. I never got to sleep either until about 7:30 am .. ❤❤ Much love to you both! ❤️❤️
Merry Christmas lovely to see you both xx❤
Merry Christmas !! God bless you both!!
Oh man, I was so happy to see both of your faces today!!
Happy Christmas and New year as well!! Wishing you both peace of mind and lot's of love
Hey there, thank you for your kind words. Yes, Runescape .. As you quite rightly say, this game is just Phenomenal. we've been playing it since 2007 and like yourself it has seen us through some very tough times indeed. I'm so happy to hear from somebody that loves it as much as we do. My user name is "Spookynash" (don't ask) lol so please feel to say "Hi" in he game if you're passing. All the best.
@@NeilBradleyMS Cheers m8 Iook forward to a runecape party.
Merry Christmas to both of you!!❤️
Merry Christmas!!
HI Neil, I just watched your first before and after video after your first dose of rituximab. Are you doing any better mobility-wise since then, which was 2 years ago?
Hello there, thanks for the message. Unfortunately I am not doing better mobility wise and it has continued to worsen to the point it’s getting very scary now.
Rituximab is only a preventative treatment, it suppresses your immune system to (in theory) stop it attacking good tissue and causing damage. I do believe without having Rituximab I would in fact be worse.
I hope all is well with yourself, and I hope this information helps you in some way. 🙏
Hope you are feeling better brother, ive been waking up with hands and feet burning and pain, going to doctor next week. I hear TRT can help reverse ms and rebuild muscle mass. Im going to talk to my neorlogist about hormone replacement therapy. Viatamin D is supposed to help too. Magnisium lotion with meletonin helps me sleep better. I always wake up feeling achey and uncomfortable until i get moving. Eating foods with gluten seem to make my symptoms worse. Hope you find some reprieve
Thank you. I’m glad you’ve found something that is helping you.
I'm still waiting on a new Neurologist. 2 abnormal MRI's. A lot of symptoms. Still. Possibly MS ? Well See?
hallelujah. 🥰
I just found your channel and have watched several posts. My heart goes out to you and your wife and all you’re going through.
My husband and I are in Idaho USA. In 2011 I got sick and my mild symptoms changed into very painful, scary symptoms. A lot of issues and medications later and I’m only recently being told by my new Neurologist that she believes I have MS. 😢 The symptoms and pain has been going on since 2011 but evidently I have “Atypical” MS. I look forward to listening to to more of your videos because the more I hear the more I relate to. Thank you for sharing! It really is helpful.
Thank you so much for your kind words.
I’m so sorry to hear that you have a potential MS diagnosis, they are words nobody wants to hear. I’m not aware of A-Typical MS, might have to Google that one.
I’m super happy that you are enjoying our videos and finding them helpful, and hopefully finding some comfort in them knowing that you are not alone.
Sending healing thoughts. 🙏
Atypical MS is what my MRI said. It just means the pattern of lesions in my brain don’t match what they usually see in MS. However I know with MS they want to see a change in the MRI before they consider it to possibly be MS. In 2011 the Neurologist didn’t know what to think of my MRI and said I had Fibromyalgia. Maybe I did but in 2021 my MRI showed more lesions. Last year I had to get a new Neurologist because mine had moved away and after telling her all my weird symptoms she prescribed baclofen in addition to a bunch of tests to rule out things I could have. Unfortunately the baclofen caused my heart to start hurting and trouble breathing when laying down. After I stopped it for a few days that seemed to improve so I tried it again. It caused the same problem and then unleashed all kinds of new symptoms but different ones than what I’d been dealing with previously and worse in some ways.
I don’t know if the heart issue is caused by MS or what. The Cardiologist said they don’t think so but they don’t know what it is. I get shortness of breath with exertion as well as chest pain and occasionally the pain really hurts not just uncomfortable. That’s when it scares me.
I use to be on Lyrica and it seemed to help with symptoms but my MRI still got worse and it made my brain fuzzy so I tapered off of it early last year and I really don’t want to go back on it. I see my Neurologist next month to discuss treatment options.
A very Happy New Year to you both with hopes that you have a much better 2024!!!
I do have a question for You Neil if you don't mind (or anyone else)...I just came from physical therapy and am sooooo unbelievably exhausted and my muscles are extremely tight (and all that was done today was muscle massages). Can anyone relate? This is exactly why I've stopped PT in the past because I leave worse than I walked in.
I gave up on physical therapy years ago, not for the same reasons you have. I didn’t feel any different or improved after a lot of hard work. I didn’t believe one hour a week would help either. I now do my own simple physical therapy exercises targeting what I feel is the weak muscles. You can find any kind of PT exercises on RUclips to help. Happy New Year to you also thank you.
Thank you kindly for responding. It's so very frustrating. Like you, I do better on my own but am "following doctor's orders" til I have my 2nd visit next month. Stay well you two❣️❣️
Hi neil, i have MS, discovered 8 brain and spinal lesions, i have some leg spasms when i try to sleep too, do you think the dmts are worth taking?
Hey there, I’m really sorry to hear what you’re struggling with at the moment. It’s seriously not easy. As for disease modifying therapies, yes I do feel they are worth taking, especially the more modern ones such as Ocrevus. I do believe they help in staving off attacks, and that’s what you need to slow down this condition. I hope my opinion helps. Take care. 🙏
Ps, try taking calcium and magnesium for the leg spasms, this supplement has helped me tremendously.
Plenty of money for bariatric surgery for people that stuff themselves but research and help for ant nerve disease is zero.
How are you? ( 25.8.24)
I've had a chaotic year, hope you're both OK? Best wishes xx
Hey there, I’d be lying if I said I was good. Far from it. Sorry to hear you’ve had a chaotic year. What’s been happening?
On the Consultants/NHS merry go round, trying unsuccessfully to find answers as to what is actually wrong with me, combined with dental problems and struggling with mental health recently & all of the life things too that get thrown at us too, a best friend who has been diagnosed with terminal cancer & family seriously ill the other side of the world.
I'm so sorry to hear things are worse for you,I've not been using RUclips alot recently so I saw your channel on my lists & thought I'd check in with you, sending you both love ,& best wishes xx
Thank you for checking in, no motivation to do videos I’m sorry to say. The illness seems to be winning. I’m terribly sorry to hear things aren’t good with yourself, and that your best friend has terminal cancer. Life is so cruel and unfair isn’t it. Sending much love and prayers. 🙏💛
@@NeilBradleyMS take care both xx
@@justMe-rd4sw You too xx
Hi Neil I hope you doing well. May I ask you questio, If you you go back to 2014, would consider HSCT?
I don’t think I’d survive HCST as it’s very aggressive chemotherapy to reset your immune system. I’m already weak as a kitten.
Hi Niel, I have now finished my video in detoxification as a treatment for MS. Could you please take a look and let me know what you think? I used to watch your videos many years ago when I had some MS like symptoms. Cheers
Hello ..can you let me know if Rituximab cause hair loss complete or partial hair loss to you after the infusion...i am in same condition advised for the same your openion and advise would be much appreciated and lot of blessings to you...awaiting fingers crossed .😢
Hello there, I’ve had Rituximab quite a number of times now, and honestly I have not experienced any hair loss whatsoever so ever. I’ve never noticed anything untoward such as hair coming out in the shower, or extra hair in my comb. I can say with confidence hair loss has definitely NOT been a side effect of Rituximab for me. I hope that helps somewhat to settle your mind. Blessings to to also my friend. 🙏💛
@@NeilBradleyMS thank you so much i have tears in my eyes...cant thank you enough for such quick response to such old video..may god bless you with good health and every happiness you ever wish for ameen
Ah bless you my friend 🙏 I can see that you are extremely worried about this therapy. If there is anything else I can help you with please don’t hesitate to ask. Take care.
Which is that game is that
I think I probably mention the online game called Runescape. I’ve been playing it since 2007.
Have you tried any detoxification treatments?
@@TheDetoxCureGuide No, I haven’t.
@@NeilBradleyMS I had CFS and multiple MS like symptoms. I used to watch your videos many years ago. I am now recovered though detoxification. In fact I am just putting a video together on the link of environmental pollutants and MS. I saw you have tried the conventional treatments without benefits. I also put together a guide on detoxifying these pollutants. Actually there are many studies showing people recovering from MS by removing these pollutants.
CONCLUSION
Findings demonstrated that higher levels
of As and Cd were associated with MS, however, no significant differences were found in
terms of Hg and Pb. TOXIC HEAVY METAL CONCENTRATIONS IN
MULTIPLE SCLEROSIS PATIENTS:
A SYSTEMATIC REVIEW AND META-ANALYSIS
A health questionnaire found that MS
subjects with amalgams had significantly more (33.7%) exacerbations during the past 12 months compared to the MS
volunteers with amalgam removal. The paper also examines epidemiological correlations between dental caries and
MS; as well as how mercury could be causing the pathological and physiological changes found in multiple sclerosis
I have finished my video on detoxification and MS. Please let me know what you thanks.
what to do if jc virus is detected in urine?
My understanding is the JC Virus resides in a significant amount of the human population, but it lies dormant as the immune system keeps it suppressed. I'm not 100% sure of my facts, but I do know the JC Virus has to been monitored if you're receiving a particular type of treatment for MS, I can't remember which treatment it is now, Tysabri I think.
@@NeilBradleyMSok. It’s been 2 years, I have received any treatment. I had bulge disc issue on l5-s1 mri scan says… there is a stiffness, earlier it was causing issue like pain and flexibility problem. Now it’s fine but still there is 5% remaining, back exercise is helping me a lot.
@@NeilBradleyMS Are you immunocompromised ?
Yes I’m immuno suppressed with rituximab.
@@NeilBradleyMS Ok, but why? Do you have any other infection apart from JCV?