MY FIRST RITUXIMAB INFUSION (Part 2 of 2) 29.06.2021: Quick update to let you know how it went.
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- เผยแพร่เมื่อ 30 มิ.ย. 2021
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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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You're both Superstars! I can tell you are so tired, I will be praying you get some good quality sleep💖
Thank you so much neil and Teresa.
I did manage to watch your vlog on your cauda equine.
Exsperiance.i have followed all your vlogs thank goodness we have angels like yourselves who share their lives with us total strangers.given hope and help to many of us just thank you both.
Not heard from pals as of yet? But live in hope thought I had a dose of covid last wk. just in recovery from it was sinuses trouble which put me a dam asthma attack can't win but thankfully it's all reading up now onwards and upwards Neil🙄.
Hope things improve for you Neil you are a very pleasant
Guy you and your lovely Teresa are two if the most delightful people u have cone across since reading vlogs and using you tube
Thank god for this technology 🙏.well bless your hearts and I wish you all the health and happiness you both deserve you lovely people🙏🤗
Hugs! I hope you got some rest. I call that level of tired "Living death" or "death warmed over". When I hit that level I can't even talk. I just lie down and pray I can sleep. You guys are so beautiful. The love you share carries you both through. Give yourself time to recover and don't worry about noting. We get it! Love you guys!
I understand your level of exhaustion, and nothing but rest will help! Neil, let Teresa dote on you while you take a very needed rest. I'm glad you have a loving spouse to support you through this, as there is nothing more needed at this time. Take it easy and feel better soon, hoping for some great results! Hugs and prayers sent your way (both of you).
Re: hospital bed. In some hospitals in US there are extra long beds. Idea- when you book treatment ask ahead for long bed, or ask for foot board to be removed. Nursing needs to accommodate your body size. Always luv your videos.
Thanks Shirley, they were able to extend my bed on the 2nd visit which was much better for me.
Hello Neil and Teresa! I sure do miss you guys. Neil know that you are always in my thoughts. Please know that we all here are rooting for you! I hope you’ve been out to your back yard and filling your bird bath! Hope to hear from you soon!
Hello Paolo, thank you for your kind message and words. I have in fact just gone and filled up the bird bath, as I’m sure you’ll agree it important they have plenty of water this warm weather. Unfortunately however, this morning for me isn’t a good one. Significant weakness and pain especially in my left leg, more so than usual so that’s got me a bit worried. Hopefully in a bit of time it will calm down. I’ve got lots of video footage I’ve got to stick together with me video editing software, so there will be a video just as soon as I can find some motivation. All the best to you.
Praises that your done for six months. Hard to explain the exhaustion we feel and then we can’t sleep. I Will be waiting for an “ Energy” update , hopefully you’ll be running a marathon in a few weeks. Happy July !
I told you you would be tired, it goes away, stay positive 💪💪🧡🧡❤️
Love, light and healing energy to you both♥ Get all the rest that you need.
You look so tired bless ya
Tomorrow is another day.sleep!
Tiredness is torture when you feel your struggling to keep them 👁lids open
Wishing you a better day tomorrow
Good news Neil and I am praying that God takes care of pain, mental exhaustion and adds joy to your day. It looks like that medication may have a positive effect on you and your health may take a turn for the best. hang in there buddy, always thinking and praying for you and Theresa and your days be prosperous.
Thank you Bodhi .. much love to you from both Teresa and I 💕🙏
Hi Neil sorry your In a lot of pain don't worry about the vlogs as long as we can see a picture or message knowing your ok that's enough for now!
Sending you and your 🌲☺️ lots of hugs 🙏 ❤️
Hope you start to feel better soon Neil. I'm sure you both enjoyed the curry . My favorite too. You are the best tonic for Neil Theresa , always smiling and in good form. Hope you are keeping well too😀
I sincerely hope it works for you soon Neil. I know these drugs do take some time to take affect. Btw, Teresa is an absolute hero. 👍👍
Thanks Ian.
Get some rest buddy ,hope tomorrow is a better day
Lovely to see you both. Thank you for sharing! Rest up and take it really easy. Hopefully you’ll see some benefit soon. Also, biscuits are the Devils work I’ve decided. Custard creams are my go to treat. 😘
Take care Neil, let's hope it kicks in soon. Want the curry recipe sounds magic.
So sorry your so tired. Prayers that this works and you can get your mobility back.❤️🙏
Get plenty of rest Neil , hope you start to feel better soon, much love to you both, take care, Grace :)
So a couple of days have passed and I hope you are feeling stronger and less exhausted. Much love from us both ❣️❤️❣️
Tree is a superstar. She's a very lovely woman with such a bright spirit. Get some rest and I pray your infusions kick in soon. Hugs to you both. God bless!
Alright - all through for 6 months! That is a small victory! Hopefully you have a full cupboard of lovely biscuits (although I envy your metabolism you need them skinny mini!). Rest, kill your B-Cells and get on that road to feeling a bit better! Cheers!
I’m glad you can smile. Get some rest.
Hi Neil, stay strong and I hope you will be better very soon ❤️🌺🌹. You are a beautiful couple
Thank you Abir 🙏💕
I love both of you! Neil, Teresa is a superstar. 😘🥰😍
Curry, chocolate, caramel, biscuits, and tea sounds good. Then get some rest. Bless you both.
Well done Neil. Thanks for uploading. What was your surprise pudding? Teresa is a diamond 💎
Thanks Nic .. and the pudding was one of those Muller Corners that I rather like :) I hope you're keeping well.
May the Lord bless you guys🙏🙏🙏
Miss seeing you two. Hope things are going ok. Hugs to you both.
Hi Patty, ahh thanks. I’m afraid things aren’t great with me at the moment, very poor mobility and lots of pain. Much love - Neil & Teresa.
So many hearts for you both ♥️♥️♥️♥️♥️
Ahh thanks Patrick 💕🙏
@@NeilBradleyMS
You’re welcome, Neil. You’re both always in my mind and heart 🙏🙏♥️♥️ I’m so glad u have Teresa with u all the time. She’s strikingly beautiful. Very nurturing and she has that very soothing voice. She’s a healer bless her 🌺 anyway pip pip and goodnight to both of u z z z
I hope u get better
Hello Neil. I’m a big fan. I’ve been watching your videos for a long time. But this is my first time leaving a comment. I have secondary progressive MS. I’ve been diagnosed for 11 years but I’ve had symptoms for 15 years. I’m having a very fatigued time at the moment. My walking is terrible I have to use crutches around the house. Wheelchair and scooter when I go out. It’s a very strange thing we are all going through. I just wanted to say hello and your not on your own. I will comment a lot more in the future. Take care. Rich Lawrenson
Hey there Rich, good to hear from you and thanks for getting touch! I'm sorry to hear that you're having to deal with all of these horrible MS symptoms at the moment, hopefully they won't stick around for long. As you probably know by watching my videos, I can totally relate to your problems walking and using crutches etc. So sorry to hear that it has to be wheelchair/scooter when you go out though, that's a tough one. For me, I can't quite get my head around 'alternative' forms of transport other than my legs, so at the moment I'm sticking to just walking very short distances.. and I mean very short. Otherwise it's just the four walls of either the house or the car at the moment. Honestly, life isn't feeling that great at the moment. I'm so please you decided to pop by and say "hello", I did take the liberty of checking to see if you have a channel yourself, and I'm glad I did because it's always nice to actually see who I'm chatting with. You have another subscriber now :) Great to hear from you, mind how you go .. and I look forward to hearing from you again. Best - Neil.
Teresa is an angel, wonder what is corry*, have tTeresa take a picture, please, it sounds great. Get some rest. Does the U.K. Not have pain management? I take a light opioid, but it just takes the edge off
Hi Neil hi Theresa.
So sorry your going though a rough time guy's.
🤞🙏For you both you look totally washed out Neil.
But from what you say about your help and treatment your getting the care you deserve! After your long struggle .
I was in hospital recently with what they thought was for the second time cauda equinna.which is a red flag condition.basically can paralyse you if not spotted or operated on there and then .but anyway it's because I was showing some of the symptoms. i still have no diagnosis for ms. I sustained two more injury's while in hospital.ended up getting my husband to come and collect me because I didn't feel safe and I was given the worst treatment imaginable.now let me just say" I am the first to applaud the NHS I have worked for them .
I know ther under so much pressure!
But I cannot find a reason for the treatment I was given once they took me to medical unit. I was alone like everyone I was terrified and in so much pain .I was written up for morphine,and codine I received it once by the first doctor on a&e.he wrote up the prescription for the time I was there.they where keeping me in for x-rays and MRI plus other things. I couldn't walk had to ask for help! Got given the commode and was basically left all that evening with out seeing a nurse .I didn't have an alarm
Wasn't shown where it was I looked bit didn't find one? The only person on the ward with me didn't speak English .I called my family exsplaing what was going on they rang through and asked if someone could give me my meds and a drink .I had been in hospital all day alone not able to walk to get help or a drink
I was an emergency case I was left for 6 hrs in a wheel chair it wasn't very busy where I was but everyone that came in after me got seen and went? I had a that point rang my husband and said there are people here with partners .with that he came down .he spoke to the triage nurse .then they realised I had been missed .what a start to my ordeal .sorry to go on Neil but I can't go back to the hospital I left after the second night .am very quiet shy person wouldn't bother any one for anything .but my family realised the way I was being treated and we have complained to pals. Haven't had reply as of yet?
But it was horrific and an in more pain now through the injury on the MRI table than imaginable .can't go back am terrified.i felt because patients don't have partners or family member with them
To help or speak up for you it's very lonely I felt like a fake wasting there time .I wouldn't mind the nurse station was right in front of my ward I could see them they could see me I waved but got ignored .
They also knew how hard it was for me to understand them with there masks on as am deaf and lip read. .so sorry for the long long message Neil .but I won't ever find out my illness now .
Hope you enjoy your biscuits and curry I love curry. Theresa you are amazing 💕🤗xx
Hello Bev, I've just very carefully read through all of your message and I'm so terribly sorry to hear about your awful experience in the hospital. You must have felt so alone!! Just awful. I think you've done the right thing complaining to PALS, Teresa and I had to do this quite a number of years ago when Teresa's sister was very sick. PALS were in fact excellent, so hopefully given a bit of time they will come back to you. Somebody should have checked on you, or at least continually asked you if you're ok. But I know what you mean about feeling a burden, because everybody is so very busy etc .. I've felt exactly the same myself many times. Bless you. Please don't apologise for writing such a long message, it really isn't a problem. I do hope that you are able to find out what the illness is, hopefully PALS will come back to you. I've learned that you need to keep pushing them sometimes if you've not received a response within a certain time period. So pop it on the calendar when to chase it up!!
I'm actually very familiar with the "Cauda Equina Syndrome" because back in 2012 when I had disc pushing on my lumber nerves, I was very much in danger of this condition. I was told I could end up in a wheel chair, and/or loose all of bowel/bladder function etc if not operated on very quickly. They had me in for surgery in a matter of days thankfully.
Lovely to hear from you Bev, and if ever you need to chat again just pop a message on the channel. All the best to you - Neil & Teresa 💕🙏
Man I wish you the best recovery, you have a beautiful angel next to you.
In few days I will have my first injection for autoimmune disease Pachymeningetis, i read so many sides effects like loosing hear and eyelashes, brows...
Did you have any symptoms?
Hello Bella, and yes I couldn't agree more with regard to that beautiful Angel.. thank you for your kind words. I'm not familiar with "Pachymeningetis" so I'm going to have a quick Google ... OMG! This sounds just horrible, and I'm so terribly sorry you're having to deal with this. I've done a little reading and it would appear it's a rare condition treated treated with Steroids, but I also read Rituximab has been used to treat this condition also. You didn't say what your treatment is called and I know people react differently to side effects. I can TOTALLY appreciate Bella your fear of loosing your hair. My wife does in fact have a lot of experience in this area because she has Alopecia!
Nevertheless, that said I've had BOTH Steroid and Rituximab treatment recently and I've seen NO SIGN of hair loss with myself, or eye lashes etc. Whilst having the Rituximab treatment I had side effects such as pounding heart, feeling quite warm (it was a warm day anyway) and generally just extremely tired and fatigued.
It's very important to remember that not every body suffers with the same side effects, but they have to list them nevertheless. I usually also IV Steroids (methylprednisolone) and to be honest I get similar side effect which I mentioned earlier, but once again I'll re-iterate no hair loss in any way for me.
I totally appreciate how concerned you must be Bella, if you have any further question I'll be more than happy to answer them for you.
I hope that your treatment goes well, and I'd be very interested to know how you get on. All the best to you - Neil.
@@NeilBradleyMS
Thank you for your reply,
So my condition happened following too late treated virus infection ( GP thought it was muscular 😎... Wrong diagnoses) it spreads to the point that it compressed my spinal cord from T2 to T6, been privately done CT and MRI scan they saw a mass, done PT scan not signs anywere else not looking like cancer. Done biopsy results says chronic inflammation ( IGG4 RD) autoimmune desease Bcells attacking healthy tissue spinal dura causing thickening.
They prescribed me steroids 60mg then tempered now im on 5mg. Done another MRI and neurologist noticed improvement but another area on T8 T10 was looking suspicious... They decided Rituximab which I will have next week... Im bit worried im not going to lie... 😏🤔
I was on 40mg of Prednisilone, but I get more side effects from Pred (tablet form that I have to take every day) than the IV Steroids that I have infused in hospital. They've tapered my Pred (tablets) steroids down now to 25mg, but over the next six months now that I'm having Rituximab they want to taper it off completely (I'm hoping).
Yes, it's the same for me .. B-Cells are attacking good tissue and in my case it's my spinal cord. The Rituximab should help slow down the attacks and the hope is that they're slowed down enough to reduce some of the inflammation and allow my body to start healing a bit. Unfortunately I've not yet seen any sign of this, but I do appreciate it is early days yet.
I totally understand how worried you are about receiving the Rituximab, I was too! But once you've actually done it and realised the side effects aren't actually too bad, you should feel a lot better. I know that everybody is different, but this is how I felt myself .. and I've also known a lot of other people on this drug who's felt the same way (channel comments). It does take time for it to kick in though, I've been told on many occasion I have to be patient. Easier said than done though right?
Another point is that you may not know is, a lot of people with MS talk a lot about about a drug called "Ocrevus". Well, Ocrevus and Rituximab are basically IDENTICAL drugs, this may help you somewhat when researching symptoms etc.
I’m being admitted to hospital tomorrow, in a horrible flare, can’t walk
Oh no Andrea! Are you still in the hospital? I hope you start to feel better really soon, sending healing thoughts 💕🙏
❤️🙏
You do look tired Neil ..but at least you're both laughing..those biccys are lovely...enjoy that curry ❤️ sending you both lots of love as always ❤️❤️❤️
Hi Neil me again sorry ment to ask!
Could you tell me more about your back pain and leg pains.i mean like where about in your lower back and legs is the pain exsactly is it there constantly ?
Or does it come and go?
This would be helpful for me. Thank you and good luck with the rest of the infusions.🙏🤗
Good morning Bev, and yes of course I’m happy to answer any questions you have.
My back pain is caused by very stiff muscles which run either side of the spinal cord, they are called the “erector spinae muscles” and are responsible for keeping us upright and balancing us. Mine don’t work properly because the signals (via the nerves) aren’t reaching them properly, mis firing as it were. The result being severe pain, not to mention almost complete loss of balance and weakness in as much sometimes I’m unable to even keep myself stood up straight and upright.
As for my legs, every muscle is weak for the same reason I mentioned above with my back. The nerve impulses are simply misfiring causing the muscles to malfunction and consequently be weak. But in addition to this I have severe nerve pain in both my legs, this is like burning and hypersensitivity. If you can Imagine somebody squeezing your legs, or maybe them both being set tight in plaster cast is the best way I can describe it.
I hope that helps Bev, wishing you a lovely day. 🙏💕
Thank you so much neil for quick response.
The pain you describe in your bk is exsactly what I suffer. Also I described my leg weakness as more like a massive tight rubber band around both my thigh's restricting my legs to move forward. or as if am under water in deep sea weighted diving boots .I don't know how to exsplain myself to my doctor's I get to nervous and just feel like I can't express my pain .the burning in my legs and then last night my dam feet where like dam water dowsing rods!
My both feet turned inwards and the cramping and twitching of the muscles was so bad I got up and to massage but it took about half HR to fix .then the calf muscles kept going for a while longer. Sometime ago I had white spots found on my brain by chance .but no one has mentioned the. At any point and am to afraid to ask about them.am. Convinced a spinal tap would prove more again I just can't ask am like they know what there doing.
Anyway thank you Neil for your time and understanding. Do t mean to go on about myself . I do wish all the best with your journey though Neil and your adorable Theresa.🙏🤞you see some improvement soon 🙏🤞
Hi there Bev, I can TOTALLY relate to the TIGHT rubber band squeezing your thighs. A very good description if you ask me. Also both of my feet turn inwards as well, very annoying, they feel like they’re on rubber bands, it’s also very painful at times. Neither of these two symptoms go away, and at the moment they seem to be worsening. Then on top, randomly the burning can start which kind of just tops everything for me. I find pain killers quite useless, Morphine barely touches the pain. Hate it hate it hate it, I’m sure you know where I’m coming from. Know that I do understand you, but yes it’s very difficult getting the Doctors to “get it”. 💕🙏
@@NeilBradleyMS Thank you so much neil .
For your time I know your going through a very tough period yourself.but thank you so much once again 🙏🤗
You’re so welcome Bev, anytime you need to chat we are here. We always monitor comments on the channel.
How is it going Neil?
Hi Michelle, not too bad thanks. We’ve been struck with a nasty cold virus which is taking ages to go. Apart from that taking it day by day, had a couple of good days to be grateful for. Worrying thing is they never last. I hope all is well with you.
Soon
You looked a bit flushed, take a Benadryl
Hi Neil and Teresa I am glad to hear No Side affects for the second round of the treatment that you just had now the magic will start soon that you will be pain free and mobile once again in time
You do look good but I can tell you look tired and yes Teresa is a 🎆 she is always their for you which I think keeps your spirits up and Neil were you stealing the biscuits 🍞 I had to take bread there was no biscuit to pick from but when your hungry your hungry right!!
It is ok to cheat once in a while 😊 But just ok get some rest at least you are out of that dreaded Hospital Bed Like I said I know those Hospital beds suck but I will stop right here and just say go get some rest and I and Logan are praying for you recovery You and Teresa stay safe and take care just give it time
It will come that you will just know and feel different ❤🙏❤ Amanda and Logan and by the way if you don't get back to me right way I totally understand you need your rest ❤ Amanda
Thank you Amanda 💕🙏
@@NeilBradleyMS Your welcome Neil Take Care 😊
Hello Neil and Teresa You don't have have to get back to me if you are extremely tired but have you noticed any slight difference? I understand if you don't know if it's working or when to know or when you will know? But I am Praying for this to work for you I have been down that path but I want to make this short and sweet but do you feel a slight difference? If you are too tired I understand if you are too tired just thumb the up or down then that is how I will know 👍good and 👎 not so good
I hope you that it is working Take ❤
Amanda and also Logan too
No difference yet Amanda, if anything I’m worse. Never been so weak. 👎
@@NeilBradleyMS Neil I really feel for you Just give it time it did just get into your body think POSITIVE just take it easy on your self and be careful with yourself when walking you will get stronger I know when your in the hospital it can be hard on the body and I know the bed situation was not good for you You will get better just give it time I and Logan have HOPE for you ❤ Amanda and Logan, P.S I put a thumbs down because how you feel no difference not that I don't like it but I do not because you feel no different as of yet Take Care ❤
Hi Neil Hi Teresa it's Teresa what's going on I haven't heard of nothing from you guys nothing from you guys we're new new remember I forgot to tell the new allergies at the top the new allergies however fell how they doing right they do I'm wise I haven't heard from the doctor yet but I'm but I'm not feeling well I did brain MRI And ne ck And a mammogram I'm having had result of anything Not feeling well at all
Hello Dee, we are still here :) I'm sorry to hear that you're not feeling very well .. it's the same for me, since starting this new treatment I too am not at all well. I haven't felt like doing another video, just taking it easy at the moment. Lots of pain wearing me out!. I hope that you start to feel a little better very sorry Dee.
@@NeilBradleyMS Is Neal matter of fact yesterday I was in feeling well myself oh myself practically slept the whole day
Today my husband said they get up go do your nails probably you will feel better if so hot outside how shy I did want to do my nails I also call the noologist To see if he got the brain and mri
They gave me a appointment to see him next week Wednesday Wednesday I let you know on Wednesday or Thursday of next week
Neil keep in contact with me Please
Of Course .. I try always to respond to message on here when I feel up to it. Recently though, I'm feeling very poorly.
@@NeilBradleyMS what happened 😳
Medication not working
Nothing seems to be working at the moment Dee, I'm in constant severe pain 24/7 and my mobility is rock bottom. So I'm not in a good place at the moment, but thank you for contacting me. It's nice to hear from you as always.
@@NeilBradleyMS are you taking pain medication