Hi Neil & Theresa. I can barely see what looks like a wedding pic on the wall. I would love to see that better. Neil you have always been & still are a charming gentleman. Thank you so much for your honesty about how it seems someone up there wants to add onto our suffering. It seems that way to me. I struggle with that a lot. In US, there is a YT channel, I have been watching. 'The Wheelchair Dad'. Stories about Dan who has paralyzed legs & extreme nerve pain. His wife films his activities & some of his moments of extreme pain & crying. This is difficult to watch. I could only see short amounts at first. It also shows him building things, travel, taking care of his kids. They talk about their belief in God & the desire to give up, Much love to you both. From So. California.
Hello Shirley, how lovely to hear from you.. and thank you for your lovely comments. Yes indeed, the Canvas photo in the background of the video is my Wife and I on our Special day in 2014. Prior to getting married we'd been the bestest of friends for 25 years however, starting to live to together and getting married was simply the icing on the cake. I'm so sorry to hear that it sounds like you're suffering and having a hard time at the moment, this makes me sad to hear. If ever you want to talk about it, I'm quite happy to listen. I too am having a real rough time of things at the moment, poor mobility and pain at unprecedented levels (I'm taken Morphine daily which I don't like to do, but have no choice).. it's like you say in your message, somebody doesn't think we've got enough to deal with at the moment, so lets give them a little bit more on top. I do hope things improve for you very soon. I've just checked out "The Wheelchair Dad" and subbed to his channel, thanks for this. All the best to you - Neil & Teresa 🙏🥰
The human body is such a complicated thing! Neil, I learn so much from your observations with your MS. I came across your videos last summer when I was looking up tingling feet and the one you posted really described what I was going through. have been following you ever since. I also experienced constant internal vibration. Extreme nerve-like pain in my thoracic spine.Very strange! My doctor looked at me as if I had two heads when I was trying to describe the sensation. The neuro did a 5-minute exam and said I didn't have MS or PD. No other tests or MRI's. He said it was caused by stress due to my husband's cancer scare. Made sense at the time but, 7 months later still have tingling/burning in the feet /hands and the internal vibrations are now turning into tremors in my neck and upper body. My eyes seem to oscillate , too. So, I finally have an appointment next month with an ENT neurologist. I am hoping they do an MRI so we can figure out what is going on. I, too, have had two flu-like viruses over the past 7 months with my symptoms worsening right before I get sick. I haven't had a sickness in years! Thank you, Neil, for your videos. Have learned so much about these neurological symptoms through your observations. Please give Teresa my get well wishes!! Hope you feel better and enjoy your sprinkling of snow today! My daffodils are popping up over here. Spring is right around the corner!
Tamara Bastone took me 12 years and several Neurologists to finally realize the symptoms I was having was MS. Had a huge flare, lost vision in one eye, new numbness and tingling in one arm and this is what prompted a visit to a new Neurologist and a diagnosis of MS. I had an MRI 12 yrs ago and an MS SPECIALIST looked at the lesions that appeared and nothing more and told me that I didn’t have MS. 🤦🏽♀️🤬 fight for your body, only you can understand that what you’re going through is not normal. If an MRI is ordered ask for the contrast! Good luck!
@@me_shell Thank you so much for sharing your experience. I have heard this happens a lot when you suffer from neurological symptoms especially regarding the time it takes to get diagnosed. Not sure what I have but will keep trying to be heard. Thank you again!
We absolutely love Daffs Tamara, they’re just the most lovely flower aren’t they. In fact we’ve not long planted some Tête á Tête which is a smaller Daffodil. Spring is such a lovely season, it brightens my days just seeing all the new growth everywhere. You really do have such a wide range of horrible symptoms, I’m stunned that Dr isn’t willing to give you an MRI. A five minute exam is insulting isn’t it, it certainly sounds like you have something neurological going on. Those internal vibrations, I know!! I’m not having them at the moment, but I know exactly what you mean. Good luck Tamara with the ENT Neuro, and I hope you get that much needed MRI. Please let us know how you get on. Take care, Neil & Teresa. x
@@NeilBradleyMS Thank you so much! I will let you know next month. We are very hopeful this specialist will be able to shed light on it. Tete a Tete is a darling! It is the one popping up right now. So petite and cheery. Next to come up will be the pure white Thalia. Another favorite, so elegant and fragrant. I love it when I get glimpses of your beautiful garden in your videos. Cheers, Neil & Teresa!
Oh no Neil,I'm sending you both well wishes. Something about MS & viruses-they seem to hold on for dear life never fully wanting to resolve. It's annoying,totally understand what you are going through. Thanks for sharing!
Hi Neil, I guess everyone with MS can write a book about flaring symptoms when getting a cold or bronchitis or even the flu! Everything thy t is disturbin the "normal" behaviour if your nervous system flares up the MS symptoms! I was laying with the flu for the past 14 days and I was literally unable to walk. I needed assistance with walking, eating and getting dressed and undressed. Very bad feeling! I can tell you. And the situation got even worse when I developed some fever onto this all! Then even talking was hard. Finding words, listening properly and answering was almost impossible. I had a terrible cough and I wasn't able to lay flat in my bed so I sat aside of my bed for hours and hours during the nights. Tired to death but not able to sleep. That is so exhausting! But it is getting better day by day and my mobility is getting better too. I am still using my qheelchair for outdoor activities, as usual, but inside the house it is getting better with the cane. So, listen, everything that is disturbing your "running" system is making problems, it doesn't matter which problems: it is important to know that it is causing problems. When you know aboutthat it is easier to cope with it. Get well soon, greetings from Germany, Britta
Oh Britta poor you, it’s sounds like you’ve been so poorly. And, like me the virus has been playing havoc with your CNS. Sitting on the side of the bed unable to sleep because of pain, I know that feeling very well!! I am however very pleased to hear you’re starting to feel better and the mobility is improving. Very scary times for you! Look after yourself.
Can relate soo much Neil, I had a vomiting bug last year which I caught of some else, wasn’t pleasant for them at all as for anyone. For myself, I had to go to hospital, it effected me on a whole new level. Could barely walk. Couldn’t even sip water. So off to the hospital at 1am I go, gave me an injection to stop the vomiting and tablets for the vomiting to take home if I felt I needed them. MS and being on tysabri made me much more vulnerable I guess. Made the MS symptoms go crazy but tbh I was too ill to even care about that. I’m always a little paranoid now if some is ill or if a bug is going around because I know us ms guys get it worse.
Wow .. so it really effected you massively Adele.. similar thing happened to me in 2013 just before I was diagnosed. It was also a vomiting bug, I'd not realised but my temp has risen quite considerably. As you're not doubt aware, an increase in core body temp is NOT good for us is it. I too try and stay away from people with any kind of bug, and yes you are a lot more vulnerable being on a DMD. Great to hear from you Adele, I hope you're keeping as well as can be.
Hey Neil, I get this a lot. My treatment is injections and when I'm getting a cold or something is brewing my injection sights become inflamed and sore. Like you said I know I'm going to be I'll before I am. Unfortunately the injections themselves also trigger my immune system so after every injection I get mini flare ups which is something I would rather live without. I'm glad your now starting to feel a bit better mate and I hope Teresa is too.
Hi Ian, good to hear from you again. I used to inject Copaxone for two years. I used to get the injection site reactions which ultimately made me stop, but no other side effects. What injections are you on if you don’t mind my asking?
@@NeilBradleyMS I have been on Betaferon for my whole MS journey. 10 years now injecting every other day. I can't tell you how battered my jab sites are but if it keeps me going then I can live with it.
Hey Neil! Sorry to hear about your cold...be very careful as my ms symptoms always worsen during colds or infections (sinus, respiratory). Drink lots of fluids like water and orange juice and make sure you eat even when you don't feel like it... chicken soup works for me. Hope both you and Theresa feel better soon!😊
Thank you my friend .. the MS symptoms started to flare up and go haywire just before the Virus is got presented itself so it was quite worrying. Feeling much better now though. I hope all is well with you too. Take care.
Morning Neil. Sorry to hear you both have been poorly ....And yes it happens to me too when I get a cold ...it really aggravates my MS ... wish you both a speedy recovery 🙂.....look forward to your next update ..Take care ..
Good morning Sallie, and thank you very much. It really highlighted the impact of these viruses on our central nervous system doesn't it. Lovely to hear from you Sallie, and thanks for your support. Wishing you a lovely day.
Hey Carlie, lovely to hear from you and thank you. I don't feel to bad this morning to be honest, I forgot to mention the lovely (not) headaches that have comes with this virus. Hopefully over the worst of it, but its amazing how it effect my symptoms. I hope you're keep well Carlie.
Hope you are feeling better soon! Viruses succccckk, especially with MS. My mom and aunt have it and I have an appointment with a neurologist in a couple weeks because my doc thinks I may as well.. 😔
Hi Neil. I had something similar after my last infusion of Ocrevus. I usually get all my vaccinations before my treatment but earlier this year I got my Flu vaccine 3w weeks after and after 4 days I woke up in the morning and my head felt heavy and I sat up slowly and I went to get out of bed and I almost went straight into my dresser no equilibrium. I quick lay down flat on my bed and didnt move for 2 hours. I had no warning at all. I could have gotten really hurt. My Drs seem to think it was the Flu shot after infusion not before that caused it. I felt not good most of the day but it went away and was just gone. So I guess I get my Flu shot before my infusion next time. Another time my son came home with strep throat and my infusion was 2 weeks away so i went to urgent care and got an antibiotic and had to postpone my infusion until i finished my meds and a week after that. I found out that if i get sick with anything i will have no fever. It was only 2 degrees higher than normal plus a sore throat. They said if i had gotten my infusion with strep throat i could of been hospitalized so thank goodness I just went to get an antibiotic quick. I know that probably doesnt help with you but it's just my experiences may one day help you or someone who's on your channel. Maybe it can help. I dont know. I wish you well my friend. Take care. Peace. 😇🤯😔🤗☺😃
Thank you very much for sharing your experience, I really appreciate it. It definitely seems to be a trend with s lot of people with MS, we just know when we are getting ill before it actually happens. The immune system kicks in and I’m pretty sure this is when everything starts to go a bit haywire. Also, I think you mentioned when you got strep throat you had an increase in temp of 2 degrees, this can be enough to really flare up your symptoms. This is called Uhthoff’s Phenomenon and happens to me sometimes. Take care.
Hi from the US! My leg is twitching tonight so I haven't slept at all. My MS acts up when my allergies go crazy. I've also noticed that weather changes effect my MS symptoms. Hope you both feel well soon!
Hello Beth, and thank you for your message. I don't really suffer (thankfully) from any allergies and I'm sorry to hear that they cause you problem also with the MS. The MS is enough to deal with on its own isn't it. With me I'm not sure if the weather effects me or not, the heat does sometimes, but then other times I'm ok.. bit of a weird one for me that is. I do however, know all about the leg twitching.. THIS IS TORTURE isn't it.. I have recently found something that is helping me though, and that is a drug called Diazepam. If you haven't already, perhaps this is something you could speak to your Doctor about. Please check out my previous video entitled "Carol Dance talks about Diazepam" she's been on this drug a long time and is quite experienced with it. You take care Beth.
Sounds like I'm facing this issue now and my symptoms act up as well. I noticed my ms told me a few days before i got ill as well. With any luck this wont last much longer. thanks for the info
Jared Helsin Hey Jared, good to hear from you. As you say hopefully the flare up of symptoms will calm down once you’re clear of the cold or virus. Look after yourself.
Hello Neil,sorry you both been unwell.So in January I thought I had ms hug.Scan said I was in remission,but I was still feeling outta puff.In end I reluctantly went to see my GP .He did all my obs and they where fine.I said I feel unwell and outta puff so something wrong.Doc sent me to ambulatory care for tests.So I had bloods done and next day I had scan with dye on my lungs.Got results back later that day and was told I had a blood clot on both my lungs.I was given an injection and tablets called apixaban to thin blood.Neil I have never felt so scared in all my life.Im still taking tablets and very slowly my breathless feeling is getting better.Just this wk on Wednesday I woke feeling sweaty and sore throat and headache.I was having pain in my chest that felt same as it did with blood clots.My husband dialled helpline and they called ambulance.Because of ms and clots best to be safe I suppose.I ended up at hospital all day till late having tests .Seems because of virus it flared up the ms to its knockout best .On one hand the ms is excaserbated by any bugs going around ,and on the other we seem to blame it for everything!! Well some docs do anyway and it's rubbing off on me.I dread to think where I would be know tho if I wasn't diagnosed with blood clots.The consultant told me how very very important it was tho to try and remember the symptoms I had because my chances of getting another are extremely high.Reason I got clots was due to poor mobility with ms.i furniture walk ànd can't walk very far.That means halfway down garden on a good day.I told doc I did potter when I could even tho it's slow.Seems it's not enough.Anyway that was a long old msg.😂 Derbyshire is beautiful.We want to move there.We will be visiting castleton soon .yay.take care for now both.🤗🤗
Hi Sharon, I can’t imagine how scared you were! Thank you for sharing that. My step daughter this time last year was very immobile due to a bad hip, she developed a pain in her leg. Turned out it was a clot which travelled to her lungs, very serious!! She was a lucky girl to recover from this as it can be fatal. Like you say it’s so important for the Docs that you remember as much detail and history as possible which enables them to help us more efficiently. Yes the bugs and virus really do exacerbate our MS symptoms, for me this virus did horrendous things with my pain and mobility. Scary. Derbyshire is beautiful, we live on the border of the county but the countryside is only a short drive away. Look after yourself.
Hi Neil, sorry you guys have been sick. I was nodding at everything you said. I always know when I’m getting sick also. I get sinus infection a lot and I start getting wobbly. Good to see you. One day I’m coming to England and I am going to look you up. It’s my dream to visit there. I hope you guys heal quickly.
Ahh Bless you Patty, that would be lovely. Yes when we get hit with an illness it certainly does send our symptoms crazy doesn't it. I hope you're feeling as well as can be. x
I am still unable to work and I’m going to try to file for social security disability but that could take years because the United States government takes their time doing anything.
I am. Just trying to make sure I have all my documents in line so hopefully I can get it quickly. There is talk of trying to get insurance for everyone here like they have there and Canada. I don’t see our president taking away from his precious wall to think bout us. Lol
hi Nial , i find one thing you said very interesting , i too have had a period of years where i have not had colds or flu but in my early years sufferd badly , now if i catch a cold i seem to be able shake it off quiet quickly ,i do feel there is some sort of pattern and a strong connection between MS and viruses
nicky cleary Hi Nicky, yes definitely. When we catch these bugs, our immune systems kick in and wreak havoc on our already damaged central Nervous system, (thanks to the MS). I’ll usually know when I’m becoming unwell as my symptoms worsen significantly for no apparent reason.
Hi Neil I like watching your videos. I am in the process of getting diagnosed with Ms. I got diagnosed with fibromyalgia in 2016 but I have been getting worse I fell over while on holiday last year had an MRI scan on brain found some lesions I had another MRI scan in October on my brain & spine I have lesions on my spine also. I take pregablin I don't drive anymore because of being dizzy most of the time
Hi Julie, thank you very much for your message and telling me about your experience. Oh and thank you for watching my videos, I’m very grateful. It took over a year for me to get diagnosed, so be prepared, it’s a bit of a quest. I used to also take Pregabalin but have recently stopped it because of side effects. This drug can actually make you feel dizzy when you first start taking it, in case you didn’t know. I’m guessing you take it for nerve pain. Good luck Julie, and all the best.
Ahh I’m so sorry to hear you’ve been poorly a long time. It’s a terrible thing being in “limbo” and not knowing what’s wrong, not having a diagnosis. I’ve been there😟 In fact, I think I’m about to be undiagnosed, because brain MRI, Spine MRI and Spinal tap all come back clear. Yet I continue to get worse, I can only walk very short distances at the moment. Not sure if you’ve seen any of my more recent videos, I’ve done a couple on my recent spinal tap (Feb 1st). I was pretty worried about having it done, turned out it was a breeze. They may help you if you’re worried about this.
@@NeilBradleyMS I have seen your video about lumber puncture it was very interesting hopefully mine will be like yours. I have lesions on my brain & spine so hopefully lumber puncture will confirm x
Hi Julie, back in 2013 when I was diagnosed with MS I also had lesions on my spinal cord, but never any in the brain. Now they appear to have vanished and my spinal fluid test is clear. Talk about in limbo land. I’m in the process of being referred to see a professor of Neurology here in the uk. Slow going though. I wish you luck with your Lumber Puncture. I’d be really interested to hear about you get on and eventually your results if you don’t mind.
'Our Teresa' is only sharing... sharing is caring!! You hit the nail on the head. You will often hear me say whilst looking up to the sky..'anything else' I have never caught my partners cold in 22 years. I am getting nasty headaches and neck ache, I hoping the headaches are codeine, however, my right arm has increased weird sensations. I can't explain the feeling I get when I touch something. A cold when I last got one, really for me is fatigue and pain everywhere in muscles and that increased numbness when I touch something on both hands. Its horrible. I hope you both are feeling better soon....erm.....erm.. Teresa still in bed at 08.45? I hope you're making lots of noise downstairs 😁🤣 Take care you two, and look forward to your next video. Oh and the snow, they don't make it in Devon like they used to. and thunderstorms which I love, I could go on, better shut up hadn't I. Cheers, Mark
Good morning Mark!! We always enjoy reading your comments, Teresa in fact has now risen (about time) and is sitting chuckling to herself on the settee.. I said to her what's up.. and she was in fact reading your message. Bummer, I'm really so sorry to hear the sensation in your arm has worsened, I can only imagine this feeling similar to that in my legs and feet. Sorry mate! Aha so you're in Devon are you, they don't make the snow up here like they used to either. When I was a kid the snow was absolutely insane, and it last for days, sometimes weeks! Not just a few hours, that why I recorded the evidence lol. Look after yourself Mark, and it's always great to hear from you! Best - Neil & Tree.
Think there's so many different viruses these days.last week out of the blue a double ear infection for me.never had one before ,let alone two.both so swollen and red to my cheeks.so was dosed up with ibrufen,ear spray, antibiotics..ugh .so I go to my neaurologist appointment, feeling ugh.my essential tremors are worse on my right side.so he's prescribed more meds.all they do is give side effects.then still feeling ugh.i have an osteopath appointment for my left elbow,( tennis elbow he's told me) to hand.previous fractures have tightened my forearm and hand .to almost unusable.so acupuncture and massage and exercises.i do have tremors in my left.but not as gross as my right side.woe is me 🎻😂,as I'm still stuck with a sore throat.as you've said some of us seem to get it more than some.get well soon both of you.ive five more weeks with the osteopath.thing is any movement my tremors kick off ,so was funny watching him guiding those acupuncture needles.🤣😂🤣
It’s no fun is it, our bodies are so fragile and vulnerable to these horrible bugs. I hope you manage to kick the double ear infection and start to feel better soon. Look after yourself.
Neil I have been watching your videos and I feel you and I have alot in common with what we are going through. Is there anyway that I can send you a private message. I would really like to pick your brain on some things. I also had the back problems and had back surgery in 2015. Just so many of the same symptoms we share. I have had problems for 8 years now and no one has been able to help me. Thank you for the consideration and for your videos.
Hello there, and thank you for your message. Yep I'm happy to chat to you privately, if you have Facebook.. you can find me if you search for "neil.bradley.37" and send me a private message that way. Happy to chat with you. Regards - Neil.
Hi, nice to hear from you. I too had a virus that I got around the time my youngest son got one from his school. I've been trying to recuperate for the last 4 weeks, it's been a challenge. Early this week I had an MRI to check for flares but the doc was unable to do the comparison with my 1st MRI (I forgot the CD-ROM in the car and since I was dropped off there, by the time I was picked up again, the appointment was over and the clinic was about to close for the day) I have to wait for my next appointment in June to get more info on that. Meanwhile, my heart palpitations are out of control since before I caught the virus so I don't know what triggered it. Docs won't do anything because all the heart/chest tests come back fine. Yes, this MS Journey is a drag at times. Emotionally I've felt gloomy and with good reason! When I saw the Flare MRI images in the doc's office, I reacted feeling very dissapointed. My first 2 thoughts were: "Yep, those are lessions" but then: "There still there! Will I ever know what healthy/normal is again?" And felt depressed for several days. Something about seeing my brain still looking messed up made me feel defeated and a reality check came a visiting. I have MS and I can't ignore what it means can I? Feelings of the day I was 1st diagnosed came back - you know the insecurities and the what ifs. Today my right side is feeling numb, it started a few days ago but today is more notable. I figured it was going to happen, for some reason most of my flares have happened starting Spring (March-April). Has anyone else seen a pattern? I thought I was gonna be prepared this year, guess I'm still sensitive (emotional) about it all. But, I'm hanging in there. Good to see you guys are too. Sending you guys another huge hug.
Hi Jayleen, thank you for writing and telling me about what been happening to you over recent months. I do understand how you must have felt when you saw the lesions on your brain scan, I would be the same. Scared, you know they’re there but nothing you can do .. definitely a receipt for feeling down. In a way, even though my recent scans are clear, I’m now suffering with this intermittent blurry eye. I’m concerned something is going to show up if I have a scan. I’m also sorry to hear you’re now suffering with new numbness down your right side, hopefully this will just be a temporary flare and it will settle down in time. Good to hear your hanging in there. I personally haven’t really seen a pattern with the seasons or weather. Sending some hugs 🤗 right back to you. Take care.
Hi Neil! After watching most of your videos, I wanted to ask - have you ever been evaluated for Stiff Person Syndrome? It's very rare and not many doctors know about it. But the symptoms are quite similar. What really started me to think about this is how much the Valium is helping you. People with this condition respond very well to treatment with Valium! Like I said before this is a very rare condition and chances are this is not the case for you, but I certainly think you should look into it. Best wishes to you! Here is a link you might want to check out rarediseases.info.nih.gov/diseases/5023/stiff-person-syndrome
Hi Jenny, thanks for thinking of me. It’s a condition I’ve not heard of but as you say it’s very rare. I will do some research on it, thanks for the link. I’m still experimenting with Valium, currently haven’t taken it for almost two weeks. It seems sometimes it works, sometimes it doesn’t, the video I did was a time when it did. Regards Neil.
I ordered a blood test myself for GAD antibodies. Doc couldn't find it. Lucky for me it was negative! Unfortunately I still don't know what's going on with me. Take care and keep us up to date!
![Felix "Unfair" | [Stray Kids : SKZ-PLAYER]](http://i.ytimg.com/vi/Oswujxm2Ag0/mqdefault.jpg)
Hi Neil & Theresa. I can barely see what looks like a wedding pic on the wall. I would love to see that better. Neil you have always been & still are a charming gentleman. Thank you so much for your honesty about how it seems someone up there wants to add onto our suffering. It seems that way to me.
I struggle with that a lot.
In US, there is a YT channel, I have been watching. 'The Wheelchair Dad'. Stories about Dan who has paralyzed legs & extreme nerve pain. His wife films his activities & some of his moments of extreme pain & crying. This is difficult to watch. I could only see short amounts at first. It also shows him building things, travel, taking care of his kids. They talk about their belief in God & the desire to give up, Much love to you both. From So. California.
Hello Shirley, how lovely to hear from you.. and thank you for your lovely comments. Yes indeed, the Canvas photo in the background of the video is my Wife and I on our Special day in 2014. Prior to getting married we'd been the bestest of friends for 25 years however, starting to live to together and getting married was simply the icing on the cake.
I'm so sorry to hear that it sounds like you're suffering and having a hard time at the moment, this makes me sad to hear. If ever you want to talk about it, I'm quite happy to listen. I too am having a real rough time of things at the moment, poor mobility and pain at unprecedented levels (I'm taken Morphine daily which I don't like to do, but have no choice).. it's like you say in your message, somebody doesn't think we've got enough to deal with at the moment, so lets give them a little bit more on top.
I do hope things improve for you very soon.
I've just checked out "The Wheelchair Dad" and subbed to his channel, thanks for this.
All the best to you - Neil & Teresa 🙏🥰
The human body is such a complicated thing! Neil, I learn so much from your observations with your MS. I came across your videos last summer when I was looking up tingling feet and the one you posted really described what I was going through. have been following you ever since. I also experienced constant internal vibration. Extreme nerve-like pain in my thoracic spine.Very strange! My doctor looked at me as if I had two heads when I was trying to describe the sensation. The neuro did a 5-minute exam and said I didn't have MS or PD. No other tests or MRI's. He said it was caused by stress due to my husband's cancer scare. Made sense at the time but, 7 months later still have tingling/burning in the feet /hands and the internal vibrations are now turning into tremors in my neck and upper body. My eyes seem to oscillate , too. So, I finally have an appointment next month with an ENT neurologist. I am hoping they do an MRI so we can figure out what is going on. I, too, have had two flu-like viruses over the past 7 months with my symptoms worsening right before I get sick. I haven't had a sickness in years! Thank you, Neil, for your videos. Have learned so much about these neurological symptoms through your observations. Please give Teresa my get well wishes!! Hope you feel better and enjoy your sprinkling of snow today! My daffodils are popping up over here. Spring is right around the corner!
Tamara Bastone took me 12 years and several Neurologists to finally realize the symptoms I was having was MS. Had a huge flare, lost vision in one eye, new numbness and tingling in one arm and this is what prompted a visit to a new Neurologist and a diagnosis of MS. I had an MRI 12 yrs ago and an MS SPECIALIST looked at the lesions that appeared and nothing more and told me that I didn’t have MS. 🤦🏽♀️🤬 fight for your body, only you can understand that what you’re going through is not normal. If an MRI is ordered ask for the contrast! Good luck!
@@me_shell Thank you so much for sharing your experience. I have heard this happens a lot when you suffer from neurological symptoms especially regarding the time it takes to get diagnosed. Not sure what I have but will keep trying to be heard. Thank you again!
We absolutely love Daffs Tamara, they’re just the most lovely flower aren’t they. In fact we’ve not long planted some Tête á Tête which is a smaller Daffodil. Spring is such a lovely season, it brightens my days just seeing all the new growth everywhere.
You really do have such a wide range of horrible symptoms, I’m stunned that Dr isn’t willing to give you an MRI. A five minute exam is insulting isn’t it, it certainly sounds like you have something neurological going on. Those internal vibrations, I know!! I’m not having them at the moment, but I know exactly what you mean.
Good luck Tamara with the ENT Neuro, and I hope you get that much needed MRI. Please let us know how you get on.
Take care, Neil & Teresa. x
@@NeilBradleyMS Thank you so much! I will let you know next month. We are very hopeful this specialist will be able to shed light on it. Tete a Tete is a darling! It is the one popping up right now. So petite and cheery. Next to come up will be the pure white Thalia. Another favorite, so elegant and fragrant. I love it when I get glimpses of your beautiful garden in your videos. Cheers, Neil & Teresa!
Oh no Neil,I'm sending you both well wishes. Something about MS & viruses-they seem to hold on for dear life never fully wanting to resolve. It's annoying,totally understand what you are going through. Thanks for sharing!
Thanks Avril, feeling much better now and symptoms have died down.
Hi Neil, I guess everyone with MS can write a book about flaring symptoms when getting a cold or bronchitis or even the flu!
Everything thy t is disturbin the "normal" behaviour if your nervous system flares up the MS symptoms!
I was laying with the flu for the past 14 days and I was literally unable to walk. I needed assistance with walking, eating and getting dressed and undressed.
Very bad feeling! I can tell you. And the situation got even worse when I developed some fever onto this all! Then even talking was hard. Finding words, listening properly and answering was almost impossible.
I had a terrible cough and I wasn't able to lay flat in my bed so I sat aside of my bed for hours and hours during the nights. Tired to death but not able to sleep. That is so exhausting!
But it is getting better day by day and my mobility is getting better too. I am still using my qheelchair for outdoor activities, as usual, but inside the house it is getting better with the cane.
So, listen, everything that is disturbing your "running" system is making problems, it doesn't matter which problems: it is important to know that it is causing problems. When you know aboutthat it is easier to cope with it.
Get well soon, greetings from Germany, Britta
Oh Britta poor you, it’s sounds like you’ve been so poorly. And, like me the virus has been playing havoc with your CNS. Sitting on the side of the bed unable to sleep because of pain, I know that feeling very well!! I am however very pleased to hear you’re starting to feel better and the mobility is improving. Very scary times for you! Look after yourself.
Can relate soo much Neil, I had a vomiting bug last year which I caught of some else, wasn’t pleasant for them at all as for anyone. For myself, I had to go to hospital, it effected me on a whole new level. Could barely walk. Couldn’t even sip water. So off to the hospital at 1am I go, gave me an injection to stop the vomiting and tablets for the vomiting to take home if I felt I needed them. MS and being on tysabri made me much more vulnerable I guess. Made the MS symptoms go crazy but tbh I was too ill to even care about that. I’m always a little paranoid now if some is ill or if a bug is going around because I know us ms
guys get it worse.
Wow .. so it really effected you massively Adele.. similar thing happened to me in 2013 just before I was diagnosed. It was also a vomiting bug, I'd not realised but my temp has risen quite considerably. As you're not doubt aware, an increase in core body temp is NOT good for us is it. I too try and stay away from people with any kind of bug, and yes you are a lot more vulnerable being on a DMD. Great to hear from you Adele, I hope you're keeping as well as can be.
Hey Neil, I get this a lot. My treatment is injections and when I'm getting a cold or something is brewing my injection sights become inflamed and sore. Like you said I know I'm going to be I'll before I am. Unfortunately the injections themselves also trigger my immune system so after every injection I get mini flare ups which is something I would rather live without.
I'm glad your now starting to feel a bit better mate and I hope Teresa is too.
Hi Ian, good to hear from you again. I used to inject Copaxone for two years. I used to get the injection site reactions which ultimately made me stop, but no other side effects. What injections are you on if you don’t mind my asking?
@@NeilBradleyMS I have been on Betaferon for my whole MS journey. 10 years now injecting every other day. I can't tell you how battered my jab sites are but if it keeps me going then I can live with it.
It’s really tough injecting.. perhaps considering a tablet form of DMT might be worth considering, like Tecfidera.
@@NeilBradleyMS have you used Tecfidera?? I think it is one of the options I can change too
No I haven’t, but. I know people that have through my channel and it’s very effective. It one of the more up to date drugs I believe.
Hey Neil! Sorry to hear about your cold...be very careful as my ms symptoms always worsen during colds or infections (sinus, respiratory). Drink lots of fluids like water and orange juice and make sure you eat even when you don't feel like it... chicken soup works for me. Hope both you and Theresa feel better soon!😊
Thank you my friend .. the MS symptoms started to flare up and go haywire just before the Virus is got presented itself so it was quite worrying. Feeling much better now though. I hope all is well with you too. Take care.
Morning Neil. Sorry to hear you both have been poorly ....And yes it happens to me too when I get a cold ...it really aggravates my MS ... wish you both a speedy recovery 🙂.....look forward to your next update ..Take care ..
Good morning Sallie, and thank you very much. It really highlighted the impact of these viruses on our central nervous system doesn't it. Lovely to hear from you Sallie, and thanks for your support. Wishing you a lovely day.
We have about 5+ feet of snow here in Northern Maine (USA). I'm surprised you don't get more snow. Hope you're feeling better soon!
When I was younger we would get a similar amount as you. Used to love it as a kid, but that amount of snow is unheard of now where I live.
I’m so sorry
I hate being sick
Get plenty of rest 😇
Hey Carlie, lovely to hear from you and thank you. I don't feel to bad this morning to be honest, I forgot to mention the lovely (not) headaches that have comes with this virus. Hopefully over the worst of it, but its amazing how it effect my symptoms. I hope you're keep well Carlie.
Good morning to you and your lovely wife. I hope the both of you get to feeling better very soon.
Good morning, and thank you very much. I hope you are well.
Hope you are feeling better soon! Viruses succccckk, especially with MS.
My mom and aunt have it and I have an appointment with a neurologist in a couple weeks because my doc thinks I may as well.. 😔
Thank you, and I wish you luck with your appointment. I hope you do not have MS. Hang in there.
Hi Neil. I had something similar after my last infusion of Ocrevus. I usually get all my vaccinations before my treatment but earlier this year I got my Flu vaccine 3w weeks after and after 4 days I woke up in the morning and my head felt heavy and I sat up slowly and I went to get out of bed and I almost went straight into my dresser no equilibrium. I quick lay down flat on my bed and didnt move for 2 hours. I had no warning at all. I could have gotten really hurt. My Drs seem to think it was the Flu shot after infusion not before that caused it. I felt not good most of the day but it went away and was just gone. So I guess I get my Flu shot before my infusion next time. Another time my son came home with strep throat and my infusion was 2 weeks away so i went to urgent care and got an antibiotic and had to postpone my infusion until i finished my meds and a week after that. I found out that if i get sick with anything i will have no fever. It was only 2 degrees higher than normal plus a sore throat. They said if i had gotten my infusion with strep throat i could of been hospitalized so thank goodness I just went to get an antibiotic quick. I know that probably doesnt help with you but it's just my experiences may one day help you or someone who's on your channel. Maybe it can help. I dont know. I wish you well my friend. Take care. Peace. 😇🤯😔🤗☺😃
Thank you very much for sharing your experience, I really appreciate it. It definitely seems to be a trend with s lot of people with MS, we just know when we are getting ill before it actually happens. The immune system kicks in and I’m pretty sure this is when everything starts to go a bit haywire. Also, I think you mentioned when you got strep throat you had an increase in temp of 2 degrees, this can be enough to really flare up your symptoms. This is called Uhthoff’s Phenomenon and happens to me sometimes. Take care.
Hi from the US! My leg is twitching tonight so I haven't slept at all. My MS acts up when my allergies go crazy. I've also noticed that weather changes effect my MS symptoms. Hope you both feel well soon!
Hello Beth, and thank you for your message. I don't really suffer (thankfully) from any allergies and I'm sorry to hear that they cause you problem also with the MS. The MS is enough to deal with on its own isn't it. With me I'm not sure if the weather effects me or not, the heat does sometimes, but then other times I'm ok.. bit of a weird one for me that is. I do however, know all about the leg twitching.. THIS IS TORTURE isn't it.. I have recently found something that is helping me though, and that is a drug called Diazepam. If you haven't already, perhaps this is something you could speak to your Doctor about. Please check out my previous video entitled "Carol Dance talks about Diazepam" she's been on this drug a long time and is quite experienced with it. You take care Beth.
So nice to see you again, sorry your suffering though. Best wishes to Teresa, love you both xx
Thanks Carole.
Sounds like I'm facing this issue now and my symptoms act up as well. I noticed my ms told me a few days before i got ill as well. With any luck this wont last much longer. thanks for the info
Jared Helsin Hey Jared, good to hear from you. As you say hopefully the flare up of symptoms will calm down once you’re clear of the cold or virus. Look after yourself.
Thanks Neil Ill try
Hello Neil,sorry you both been unwell.So in January I thought I had ms hug.Scan said I was in remission,but I was still feeling outta puff.In end I reluctantly went to see my GP .He did all my obs and they where fine.I said I feel unwell and outta puff so something wrong.Doc sent me to ambulatory care for tests.So I had bloods done and next day I had scan with dye on my lungs.Got results back later that day and was told I had a blood clot on both my lungs.I was given an injection and tablets called apixaban to thin blood.Neil I have never felt so scared in all my life.Im still taking tablets and very slowly my breathless feeling is getting better.Just this wk on Wednesday I woke feeling sweaty and sore throat and headache.I was having pain in my chest that felt same as it did with blood clots.My husband dialled helpline and they called ambulance.Because of ms and clots best to be safe I suppose.I ended up at hospital all day till late having tests .Seems because of virus it flared up the ms to its knockout best .On one hand the ms is excaserbated by any bugs going around ,and on the other we seem to blame it for everything!! Well some docs do anyway and it's rubbing off on me.I dread to think where I would be know tho if I wasn't diagnosed with blood clots.The consultant told me how very very important it was tho to try and remember the symptoms I had because my chances of getting another are extremely high.Reason I got clots was due to poor mobility with ms.i furniture walk ànd can't walk very far.That means halfway down garden on a good day.I told doc I did potter when I could even tho it's slow.Seems it's not enough.Anyway that was a long old msg.😂 Derbyshire is beautiful.We want to move there.We will be visiting castleton soon .yay.take care for now both.🤗🤗
Hi Sharon, I can’t imagine how scared you were! Thank you for sharing that. My step daughter this time last year was very immobile due to a bad hip, she developed a pain in her leg. Turned out it was a clot which travelled to her lungs, very serious!! She was a lucky girl to recover from this as it can be fatal. Like you say it’s so important for the Docs that you remember as much detail and history as possible which enables them to help us more efficiently. Yes the bugs and virus really do exacerbate our MS symptoms, for me this virus did horrendous things with my pain and mobility. Scary. Derbyshire is beautiful, we live on the border of the county but the countryside is only a short drive away. Look after yourself.
Hi Neil, sorry you guys have been sick. I was nodding at everything you said. I always know when I’m getting sick also. I get sinus infection a lot and I start getting wobbly. Good to see you. One day I’m coming to England and I am going to look you up. It’s my dream to visit there. I hope you guys heal quickly.
Ahh Bless you Patty, that would be lovely. Yes when we get hit with an illness it certainly does send our symptoms crazy doesn't it. I hope you're feeling as well as can be. x
I am still unable to work and I’m going to try to file for social security disability but that could take years because the United States government takes their time doing anything.
I think you should Patty definitely if you’re still suffering and unable to work. It also takes a very long time here also.
I am. Just trying to make sure I have all my documents in line so hopefully I can get it quickly. There is talk of trying to get insurance for everyone here like they have there and Canada. I don’t see our president taking away from his precious wall to think bout us. Lol
Good luck with your quest Patty to get this benefit you really deserve. Please let me know how you get on. As for the president, well.. no comment 😆
hi Nial , i find one thing you said very interesting , i too have had a period of years where i have not had colds or flu but in my early years sufferd badly , now if i catch a cold i seem to be able shake it off quiet quickly ,i do feel there is some sort of pattern and a strong connection between MS and viruses
nicky cleary Hi Nicky, yes definitely. When we catch these bugs, our immune systems kick in and wreak havoc on our already damaged central Nervous system, (thanks to the MS). I’ll usually know when I’m becoming unwell as my symptoms worsen significantly for no apparent reason.
You are right. Virus makes it worse. I got food poisoning on vacation in January and I’m just starting to recover. Hang in there.
Thanks Linda .. oh no that sounds just horrible. Sounds like you been really poorly, good to hear you’re now recovering.
Hi Neil I like watching your videos. I am in the process of getting diagnosed with Ms. I got diagnosed with fibromyalgia in 2016 but I have been getting worse I fell over while on holiday last year had an MRI scan on brain found some lesions I had another MRI scan in October on my brain & spine I have lesions on my spine also. I take pregablin I don't drive anymore because of being dizzy most of the time
Hi Julie, thank you very much for your message and telling me about your experience. Oh and thank you for watching my videos, I’m very grateful. It took over a year for me to get diagnosed, so be prepared, it’s a bit of a quest. I used to also take Pregabalin but have recently stopped it because of side effects. This drug can actually make you feel dizzy when you first start taking it, in case you didn’t know. I’m guessing you take it for nerve pain. Good luck Julie, and all the best.
@@NeilBradleyMS I have a lumber puncture on the 2nd April hopefully get a diagnosis I have been ill too long. Hope you're doing okay x
Ahh I’m so sorry to hear you’ve been poorly a long time. It’s a terrible thing being in “limbo” and not knowing what’s wrong, not having a diagnosis. I’ve been there😟 In fact, I think I’m about to be undiagnosed, because brain MRI, Spine MRI and Spinal tap all come back clear. Yet I continue to get worse, I can only walk very short distances at the moment. Not sure if you’ve seen any of my more recent videos, I’ve done a couple on my recent spinal tap (Feb 1st). I was pretty worried about having it done, turned out it was a breeze. They may help you if you’re worried about this.
@@NeilBradleyMS I have seen your video about lumber puncture it was very interesting hopefully mine will be like yours. I have lesions on my brain & spine so hopefully lumber puncture will confirm x
Hi Julie, back in 2013 when I was diagnosed with MS I also had lesions on my spinal cord, but never any in the brain. Now they appear to have vanished and my spinal fluid test is clear. Talk about in limbo land. I’m in the process of being referred to see a professor of Neurology here in the uk. Slow going though. I wish you luck with your Lumber Puncture. I’d be really interested to hear about you get on and eventually your results if you don’t mind.
'Our Teresa' is only sharing... sharing is caring!! You hit the nail on the head. You will often hear me say whilst looking up to the sky..'anything else' I have never caught my partners cold in 22 years.
I am getting nasty headaches and neck ache, I hoping the headaches are codeine, however, my right arm has increased weird sensations.
I can't explain the feeling I get when I touch something. A cold when I last got one, really for me is fatigue and pain everywhere in muscles and that increased numbness when I touch something on both hands. Its horrible.
I hope you both are feeling better soon....erm.....erm.. Teresa still in bed at 08.45? I hope you're making lots of noise downstairs 😁🤣 Take care you two, and look forward to your next video. Oh and the snow, they don't make it in Devon like they used to. and thunderstorms which I love, I could go on, better shut up hadn't I. Cheers, Mark
Good morning Mark!! We always enjoy reading your comments, Teresa in fact has now risen (about time) and is sitting chuckling to herself on the settee.. I said to her what's up.. and she was in fact reading your message. Bummer, I'm really so sorry to hear the sensation in your arm has worsened, I can only imagine this feeling similar to that in my legs and feet. Sorry mate! Aha so you're in Devon are you, they don't make the snow up here like they used to either. When I was a kid the snow was absolutely insane, and it last for days, sometimes weeks! Not just a few hours, that why I recorded the evidence lol. Look after yourself Mark, and it's always great to hear from you! Best - Neil & Tree.
@@NeilBradleyMS Thank you to you both, that cheered me up knowing you enjoy my comments. ❤
Think there's so many different viruses these days.last week out of the blue a double ear infection for me.never had one before ,let alone two.both so swollen and red to my cheeks.so was dosed up with ibrufen,ear spray, antibiotics..ugh .so I go to my neaurologist appointment, feeling ugh.my essential tremors are worse on my right side.so he's prescribed more meds.all they do is give side effects.then still feeling ugh.i have an osteopath appointment for my left elbow,( tennis elbow he's told me) to hand.previous fractures have tightened my forearm and hand .to almost unusable.so acupuncture and massage and exercises.i do have tremors in my left.but not as gross as my right side.woe is me 🎻😂,as I'm still stuck with a sore throat.as you've said some of us seem to get it more than some.get well soon both of you.ive five more weeks with the osteopath.thing is any movement my tremors kick off ,so was funny watching him guiding those acupuncture needles.🤣😂🤣
It’s no fun is it, our bodies are so fragile and vulnerable to these horrible bugs. I hope you manage to kick the double ear infection and start to feel better soon. Look after yourself.
@@NeilBradleyMS thankyou,and you two ..off to see the osteopath 💕
Neil
I have been watching your videos and I feel you and I have alot in common with what we are going through. Is there anyway that I can send you a private message. I would really like to pick your brain on some things. I also had the back problems and had back surgery in 2015. Just so many of the same symptoms we share. I have had problems for 8 years now and no one has been able to help me.
Thank you for the consideration and for your videos.
Hello there, and thank you for your message. Yep I'm happy to chat to you privately, if you have Facebook.. you can find me if you search for "neil.bradley.37" and send me a private message that way. Happy to chat with you. Regards - Neil.
Hi, nice to hear from you. I too had a virus that I got around the time my youngest son got one from his school. I've been trying to recuperate for the last 4 weeks, it's been a challenge. Early this week I had an MRI to check for flares but the doc was unable to do the comparison with my 1st MRI (I forgot the CD-ROM in the car and since I was dropped off there, by the time I was picked up again, the appointment was over and the clinic was about to close for the day) I have to wait for my next appointment in June to get more info on that. Meanwhile, my heart palpitations are out of control since before I caught the virus so I don't know what triggered it. Docs won't do anything because all the heart/chest tests come back fine. Yes, this MS Journey is a drag at times. Emotionally I've felt gloomy and with good reason! When I saw the Flare MRI images in the doc's office, I reacted feeling very dissapointed. My first 2 thoughts were: "Yep, those are lessions" but then: "There still there! Will I ever know what healthy/normal is again?" And felt depressed for several days.
Something about seeing my brain still looking messed up made me feel defeated and a reality check came a visiting. I have MS and I can't ignore what it means can I? Feelings of the day I was 1st diagnosed came back - you know the insecurities and the what ifs. Today my right side is feeling numb, it started a few days ago but today is more notable. I figured it was going to happen, for some reason most of my flares have happened starting Spring (March-April). Has anyone else seen a pattern? I thought I was gonna be prepared this year, guess I'm still sensitive (emotional) about it all. But, I'm hanging in there. Good to see you guys are too. Sending you guys another huge hug.
Hi Jayleen, thank you for writing and telling me about what been happening to you over recent months. I do understand how you must have felt when you saw the lesions on your brain scan, I would be the same. Scared, you know they’re there but nothing you can do .. definitely a receipt for feeling down. In a way, even though my recent scans are clear, I’m now suffering with this intermittent blurry eye. I’m concerned something is going to show up if I have a scan. I’m also sorry to hear you’re now suffering with new numbness down your right side, hopefully this will just be a temporary flare and it will settle down in time. Good to hear your hanging in there. I personally haven’t really seen a pattern with the seasons or weather. Sending some hugs 🤗 right back to you. Take care.
I just got over the flu
Have you researched magnesium ?
Not recently, I used to take magnesium for quite a long time, probably about a year .. Unfortunately I didn’t notice any change.
@@NeilBradleyMS Ok. I'm trying to figure it out myself. Fat soluble vitamins seem to be the answer but, it takes a while.
Hi Neil! After watching most of your videos, I wanted to ask - have you ever been evaluated for Stiff Person Syndrome? It's very rare and not many doctors know about it. But the symptoms are quite similar. What really started me to think about this is how much the Valium is helping you. People with this condition respond very well to treatment with Valium! Like I said before this is a very rare condition and chances are this is not the case for you, but I certainly think you should look into it. Best wishes to you! Here is a link you might want to check out rarediseases.info.nih.gov/diseases/5023/stiff-person-syndrome
Hi Jenny, thanks for thinking of me. It’s a condition I’ve not heard of but as you say it’s very rare. I will do some research on it, thanks for the link. I’m still experimenting with Valium, currently haven’t taken it for almost two weeks. It seems sometimes it works, sometimes it doesn’t, the video I did was a time when it did. Regards Neil.
I ordered a blood test myself for GAD antibodies. Doc couldn't find it. Lucky for me it was negative! Unfortunately I still don't know what's going on with me. Take care and keep us up to date!