Neil, thank you so much for your videos. They mean a lot to me I was diagnosised in March of last year with RRMS. I know what your talk about with the severe pain. Right now I am on my 5th or 6th day of headache like pain that bring me to my knees hurts so bad. Thanks again I watch the video's and it helps to understand some of the thing that are going on with me.
Neil, thanks for replying. Yes I have talk to MS specialist and she put me on a 6 day course of steroids. I have had some relief, but not a lot. I think that this is a relapse that is why she put me on the steroids She gave me a prescription for muscle relaxers and they seem to help a little, but I've got to get back to work on Monday so tomorrow is the last day I can do one in the morning. I'm noticing to that my legs are feeling really weak.. Yes, I have also been praying for relief, I keep you and everyone with MS in my prayers nightly. Take care--Deanna
Thank you for your response Deanna. It's a worry isn't it, especially when life continues and you have to work which, is extremely difficult when you're in a lot of pain right. I do understand, and I can totally relate to having weak legs. Thoughts are with you, Take care and stay in touch. - Neil.
neil i am a MS patient....had symptoms since 1998 while in Africa.... i am a doctor with Doctors Without Borders and in Africa 10 yrs. it was brutal with the heat and the fatigue... couldn't manage well my dexterity was shot becaquse of the numbness in my hands and fingers. finally got diagnosed in 2015. have had so many symptoms since. have RRMS and and are taking a lot of meds. was methylprednison but it plays havoc on kidneys and liver. so they started me on Copaxon. no side effects as such. Also i am on gameapetin for pain....not addictive and really helps with pain....300-400 mg......Also Neil do you experience puritus ( severe icthing ) really annoying especiall at night. Gabapentin usually takens care of that somewhat. well i know you are there and i don't feel so alienated and alone.....so i will quite babbling and say we shall talk again and Merry Christmas and a New Year 2017 to you and your wife. we will go forward and fight this thing. Goodnight Neil and have good holidays.
Dear Bode, Thank you for your comment, its really appreciated. It's very interesting to hear about your work in Africa, but I am very sorry to hear you had to give up something that I'm sure was close to your heart because of this dreadful disease. I get numbness in my finger tips from time to time especially when I'm hot, but fortunately for me no other symptoms in my hands/arms etc. All of my symptoms are in my feet/legs and I can really relate to the numbness you experience. For me, in the mix also I get tightness, burning, humming, buzzing etc.. its most unpleasant but I've become accustomed over the years. Ok so RRMS you will be experiencing relapses with remission, at which point they'll probably administer Methylprednisolone to help reduce any inflammation, I've had this once by IV across 3 days back in 2013 but not since. To be honest, I could do with a dose but the hospital doesn't seem keen on giving it to me. I'm in a transitional stage to SPMS. I've been on Copaxone also but I took myself off it because of side effects (injection site reactions). How are you getting on with Copaxone? I've not experienced the Puritus that you talk about, and I believe this may be very fortunate on my behalf.. it doesn't sound nice at all. Are you able to take something for this which take the edge off? I was on Pregabalin which is a very similar drug to Gabapentin but I've recently come off that also. I wasn't dealing with the side effect very well and decided to come off all drugs and "reset" my body (as it were) to a clean slate. i'm still in the process of doing this actually because it's not been an easy journey. I'm glad you don't feel so alone and Alienated, I started this channel not only to act as a timeline to look back upon myself, but also for people such as yourself so that you are able to relate. I think its important for people with this frightening disease to be able to connect with others, so they don't feel quite so alone. One of the major problems with MS is its a "hidden" disease, I'm sure you've heard people say to you "you look well today" .. its because you do LOOK well, but they're can't understand or appreciate HOW you're feeling which, quite frankly is changing on a daily basis, perhaps even hourly. This isn't their fault though. I understand Bode, and please don't ever think for a moment you're babbling.. please feel free to contact me anytime you like. My channel is getting fairly busy as of late, I may be a day or two getting back to you, but rest assured I will write back always. I hope you had yourself a nice Christmas, and I wish you a very Happy New Year. I've included my MS Vlog Playlist below just in case you've not spotted it, there is just over 20 videos in there now which you may find interesting should you find the time. th-cam.com/play/PLKh4CtwH9cEUJcntnXWXyo-OtqnMccwWU.html Take care, Neil.
Thanks Neil for reply and advice.....yes my wife and daughter did not understand the invisible disease as it is stated sometimes, because you look well and yet invisibly you are suffering. some call me lazy because of the fatigue." oh you go to gym to exercise. you are not sick." But my neurologist feels exercise will help with the nerves rebuilding somewhat and it makes me have purpose and delight to do it. But i do it around 4:30 am when my energy is at highest. come home to eat breakfast and then i lay down. I rest about one hour then write answers to emails and you tube viewing. i am finding the drugs that are pill form for relapsing are better tolerated than injectable. The drugs have come a long way since the beta-one drugs so i am moving to pill form. probably Gilenya. Also Gabapentin works better and is not as addictive as percocet/ hydromorphone etc. Also Gabapentin works for the iching. Numbness and pins and needels started in the feet. Moved up the legs as time progressed. Have spasms in feet, calves, hamstrings, buttocks, upper back and near shoulder blades. Spasms between ribs and right side of face. But Baclofen works wonders on the spasms. Prednisone works wonders too but after 2 months need to come off and give kidneys and liver a rest. usually they don't want to use it more than 3-4 times a year. That is why Gilenya and other drugs for relapses is better than prednisone. But prednisone did clear my optic nueritis in 2 months. These symptoms come and go and not all return at once but i have quite a few at one time. The pain in the legs and upper back is so relentless that some days I don't want to move out of bed but I have to force myself. I feel terrible that my family has to put up with me and this disease and at times i feel like isolating myself from society so I don't have to be seen. My wife works for the Government so she is quite busy but will retire soon. Daughter lives with us from an abusive relationship with husband, so she has twin 4 yr olds so is busy as a teacher and the kids. a lot of stress around the house. That and upper respiratory sends me into relapse. Well i won't keep you Neil...Hope you and your wife and family had a Merry Christmas. And Molly too...I pray for her because I love my animals too and will do anything for them. Talk later Neil.
Thank you Bode for coming back to me, and it very interesting to hear about your challenges with MS, I appreciate you sharing them. It does sound that you have a very busy/stressful (at times) household and I'm not sure if its the same with you, but I find if I'm up and about doing things constantly all of the time, it about breaks me. I get to the point whereby I can barely put one foot in front of the other, having said that everybody is different though. My MS is fairly progress (transitioning to Secondary Progressive) and my mobility isn't so great, sometimes its good though. We did have a good Christmas thanks, albeit quite a busy one. I have to say I quite enjoy the quite period after all the festivities have calmed down :) I hope you have a Happy New Year Bode. Thank you for your kind thoughts and prayers for Molly, in actual fact she never ceases to amaze me! She's actually pretty good at the moment and eating exceptionally well. I'm hoping to do another video of her perhaps in the new year. Regards - Neil.
Hi Angel - Yes quite amazing actually when I compared it to yesterday.. Because my pain changed so radically the very next day I thought it only decent to make an UPDATE video to let everybody know. Merry Christmas to you, and a Happy New Year. Neil.
Hi I have what you get I hardly sleep and the pain in my right leg is unbearable I dont sleep for 3 days and when I do sleep its 2 solid days and none of my family can wake me up and I have no memory of whats happened, I keep a fan close by as it seems to stop the pain from moving round, my doctor has just put me on pills for restless leg syndrome, I was in bed gor 3 days over Christmas cos I was just exhausted and it does make you think really negative and nobody understands, love your cat by the way, I have 5, I took a stray in who was pregnant and I helped her give birth and we had 4 little kittens and I kept all of them my house belongs to my cats I only need to look at them and they make me smile every day, I know wgat your going through and its horrible and makes you want to cry I get really irritable and snappy, I just want it to go away I cant feel my hands or feet my speach sometimes slurrs and I fet brain fog and sometimes cant swallow, its shit and never goes away, I really hope you get better. :-)
Hey Sue - thank you for your comment! FIVE CATS!! Wow that's amazing to here, and yes I bet the house does belong to them instead of you lol. No, but seriously that is so nice that you're caring for them.. they need you and they give you so much joy.. absolutely brilliant! The pains in the legs really do take over your life don't they, I wish they would go away I really do. Even now as I'm typing this message to you my legs are tight and numb.. its horrible and the thought that I've probably for this now for the rest of my life isn't a nice one. I get you Sue, I really do understand where you're coming from. Pretty much now every night I have anxiety about going to bed, will I be able to sleep? I have to be up at 6:30am, but I don't go to bed until midnight.. I wait until I'm really really tired in the hope I will drop off to sleep a bit better. Even now it 11:18pm uk time. I hope this message finds you feeling a bit better Sue, feel free to pop back any time for a chat. Regards - Neil.
@@NeilBradleyMS hi Neil, I have not been officially diagnosed although I am suffering from all the same symptoms. It all started last May when I had a routine eye exam at specsavers. They did an OCT 3D Optical Imaging on my eyes without my consent. I had a major reaction which I believe was Optic Neuritis which they disputed. I thought I suffered from fibromyalgia but now believe it was a benign multiple sclerosis and the eye test triggered off this chronic problem in both my eyes and chronic pain in my body. Like you said, it changes from day to day. Shortly after I fell and broke my arm last winter and hands and fingers hardly work. Chronic pain in my neck and my back getting worse. Can't use either arm very well and sometimes my feet go on me for an hour or two and then come right. Be interested in your feedback. Funny, the hopeless 'professionals' here say I am ok.
Hi Carol, I’m sorry to hear about your problems. It’s so frustrating not being able to get to the bottom of things, especially when symptoms get worse and then get better for no apparent reason. You never know whether you’re coming or going. Have you started the quest for answers yet? It took me just over a year to get diagnosed and that was back in 2013. My diagnosis is now up in the air and they’re not sure what’s wrong with me as recent scans and tests have come back clear. Good luck with trying to find some answers.
@@NeilBradleyMS thanks Neil for answering my comments. I really appreciate you sharing your journey with MS. Being educated about what is going on can take a lot of fear out of our daily experiences, which can vary dramatically from day to day. For me the eye pressure, pain throughout my body and chronic fatigue which seems to come on suddenly. It's good not to feel alone. Thanks again for your reply. Great job you are doing!
Thank you Carol, it really is a daily struggle isn’t. I’ve found one of the hardest things is educating people that you’re “no longer up to it” because of the pain and mobility issues. Look after yourself.
I am, actually. I had to go in to the hospital a while ago, and they gave me some meds. Been resting. So I've felt pretty good the last few days, besides being sick. We're at a level 2 snow event where I live, so outside isn't much of an option for me. It goes up to my knees in some places.
Well, I'm glad to hear you're feeling ok .. It's funny you should say that about the snow because I live in the UK and only today they've given out snow in the next few days! Secretly I'm quite looking forward to it, but I seriously need to watch it, don't want to end up in A&E, my walking is bad enough lol.
Thank you Sunny, Yep for sure.. certainly a much better day than yesterday. I hope you had a very Merry Christmas also, and a Happy New Year. All the best - Neil.
I'll be sure to pass that on, thank you Willo. I hope you and your family had a really nice Christmas, and I'd also like to wish you a very Happy 2017. Best Regards - Neil.
Good morning Neil. Happy Christmas Eve 2016. Glad you're better this morning, and you had a solid 5 hours sleep. Hopefully, you'll be okay for Christmas Day. I'm pleased that people's comments are helping you. But you help others too, so it works both ways.
Hey there! Thanks for your very candid videos. I have primary progressive. I'm scared. Feeling hopeless. I've still got a 16 year old at home and my husband died 10 years ago. I'm losing my home, already lost my job, I'm ready to give up. Any advice? I think I'm depressed 😔 thanks to you though, I don't feel so alone. Prayers 🙏❣️
Hi Brielle, my wife actually read out your comment and as she did we felt for you so very much. What a terrible situation to be in, I can’t imagine how scary it must be at the prospect of losing your home. Are you in the UK? I’m terribly sorry to hear you have lost your husband. I’m guessing you’ve lost your job through having your illness😔 I’m afraid I don’t have much advice apart from, my wife and I would be more than happy to chat to you anytime. You never know, we may be able to come up with a plan or strategy to help you, something perhaps you’d not thought of. Ill leave that thought with you, absolutely no pressure. I’m super happy that at least by watching my videos you don’t feel quite so alone. Sending healing thoughts and prayers your way my friend. 💞🙏
Neil thank you for your continued vlogs of your journey with MS. I still have no official dx for MS but we are getting closer and all the symptoms are still there with new ones making an appearance as well. Scheduled for another brain MRI this week to see if new lesions. Have you had any tremor issues? I know everyone has their own unique experience with MS.
Hi Nell. I'm glad you're finding my Vlog useful in some way.. Isn't it frustrating knowing that you've definitely got something wrong with you, you might have even done the research yourself online but waiting for the Medical guys to catch up just feels like an age. And then you have the added anxiety of wondering if anything will show up with the all tests that they do. I don't think I've had any Tremor issues Nell.. could you describe what the tremor is like for you and I'll let you know if I've had this. Usually in a morning both of my legs feel like they're plugged into the electricity supplier, humming and buzzing, this could be similar. Regards - Neil.
it's been confirmed I have MS don't know if it's rrms or what I did have a episode a year back not as severe as this episode but it did go away any idea as if what type I may have
Hi Wade - That's a real bummer, sorry mate.. I know it really sucks. I'm surprised they've not given you the type of MS because as a rule it has to fit in to usually one of three categories, they should have told you this really. I would say you need to push them into giving you a correct diagnosis because just MS isn't really enough. The most common type of MS which a very high percentage of people with MS are diagnosed with initially is Relapsing Remitting MS (RRMS). This is where you will have a relapse (an attack of new symptoms) .. these symptoms will manifest for a random period of time, but then you will notice they will slowly start to get better. This is the remitting part of the RRMS, so the symptoms are going into remission. Usually when you have a new attack (relapse) you would seek medical help and be put on (usually) a small course of steroids, these are powerful anti-inflammatories which help calm the relapse down. For me, I had these over a course of three days in 2013 and they helped considerably, my drunk walking wasn't quite so drunk if you know what I mean :-). Regards - Neil.
I can totally appreciate this wade .. it's important to surround yourself with your family, friends and loved ones whilst you're feeling like this. You need time for it to sink in, and for you to come to terms with the diagnosis. Whatever you do, don't bottle it up and keep it all to yourself.. share your fears with your nearest and dearest, it will make you feel better just by telling somebody else about how your feeling. I know this, because I do it myself.. I'm fortunate to have an amazingly understanding wife who totally "gets" my situation. Keep a journal and record any new symptoms, the smallest change in existing symptoms and how its all making you feel (scared), this is extremely important because it will help the Doctors arrive at the correct diagnosis for your MS and consequently provide the correct treatment and care. If it is RRMS, there a lot of treatments called Disease Modifying Drugs (DMD's) .. these don't cure MS because sadly there is no cure (yet), but what they do is slow down the relapses, some by up to 50-60%. Feel free to pop back on here anytime if you want to chat. Regards - Neil.
Oh, and one more thing.. if you want to understand a little bit more about how MS effects your body then please check out my video where I attempt to interpret MS and the effects it has on the body in simpler and easier to understand term. Link below for you. th-cam.com/video/rGhoV3XQ3EE/w-d-xo.html&list=PLKh4CtwH9cEUJcntnXWXyo-OtqnMccwWU
.. And finally here is another link to the MS Society website which is EXCELLENT .. they provide amazing support. I've also left a link to the different types of MS so you can have a read. www.mssociety.org.uk/ www.mssociety.org.uk/what-is-ms/types-of-ms
Dear Neil, glad to hear you are doing better today. Wishing you a merry Christmas. I always like to watch your videos, your are a very nice person if I may say so :-)
Thank you very much for saying so Martin. Yes, the next day was considerably better and it just goes to show how this dreaded disease can change how you feel so rapidly. I hope you also had a really great Christmas, and I wish you and your family a Happy New Year. Good to hear from you. Kind Regards - Neil.
Hello Jaime, and Thank you I really appreciate your kind words. So far so good, since that really bad day I've been ok but I just never know when its going to get bad, and how long its going to last. That's when the fear kicks in for me, and I'm sure for a lot of other too. I hope you too had an amazing Christmas, mine was busy but enjoyable. Happy New Year to you also. x
Hi Andrew, the pain is terrible isn’t it. I’m really sorry you’re having to deal with this. I take Codeine and Paracetamol during the day for pain but honestly, I believe my body has built up a tolerance to it as it doesn’t seem to do much. I also get lots of nerve pain in my legs, but I don’t take anything for it as this particular class of drugs also worsen my already poor mobility. I hope you find something that works for you Andrew.
Hey Rikke! Thanks, yes definitely feeling loads better the next day which I found absolutely amazing considering how much pain I was in the previous day. Just shows how MS can change from day to day can't it. Yep, still ok thanks. I'll be sure to "mew" Merry Merry Catmas to Molly lol :) I hope you've had a good Christmas, and I wish you a Happy New year for 2017. Best Regards - Neil.
thanks Neil and happy new year to you as well my numbness is starting to push down from my chest now which has been a relief now just to keep hoping it will completely go away time will tell hope you are still feeling well
Fingers crossed for you Wade. For me the TM symptoms got really bad and peaked, stayed like it for a while then gradually started to calm down and fade. You'll have to be patient though because this happened over quite a long period of time, a few months if I recall.. back in 2007. I'm not feeling to bad thanks Wade, although I just felt like spending an hour in the garden doing some light work. I need to make a start raking the 10 billion leaves that our Apple Tree's have dropped now that the cold weather is upon us. Regards - Neil.
thanks Neil it's been a very slow process but I've learned patience is best with this I have my good days and my bad days but I make myself try and work out at least every other day and it seems to be improving from it just got to keep moving as much as possible and stay positive😃
Neil, pain was (& still is) my main symptom starting in 2011, severe nerve pain in arms and legs, worse after activity.....never goes away. I’m wondering if this is more common in spms/ppms than rrms ? Is yours worse after activity? Thank you for sharing, you’re helping so many including myself.
Hi Karen, I'm so very immobile now that activity isn't a word in my dictionary :) However, not so many years ago I was very active and I do recall when I'd been doing several hours of gardening (for example) my symptoms would flare up, but not significantly. I'm not so sure it matters which form of MS you have, it's a possibility I suppose. I'm so please you're finding my videos helpful in some way. I hope all is well with yourself, Regards - Neil.
❤❤❤
tried to leave comments but having trouble with you tube. Sorry!
Hi Bode - TH-cam comment system isn't the greatest, I know this from experience!! I hope it sorts itself out for you soon. - Neil.
Neil, thank you so much for your videos. They mean a lot to me I was diagnosised in March of last year with RRMS. I know what your talk about with the severe pain. Right now I am on my 5th or 6th day of headache like pain that bring me to my knees hurts so bad. Thanks again I watch the video's and it helps to understand some of the thing that are going on with me.
Neil, thanks for replying. Yes I have talk to MS specialist and she put me on a 6 day course of steroids. I have had some relief, but not a lot. I think that this is a relapse that is why she put me on the steroids She gave me a prescription for muscle relaxers and they seem to help a little, but I've got to get back to work on Monday so tomorrow is the last day I can do one in the morning. I'm noticing to that my legs are feeling really weak.. Yes, I have also been praying for relief, I keep you and everyone with MS in my prayers nightly. Take care--Deanna
Thank you for your response Deanna. It's a worry isn't it, especially when life continues and you have to work which, is extremely difficult when you're in a lot of pain right. I do understand, and I can totally relate to having weak legs. Thoughts are with you, Take care and stay in touch. - Neil.
neil i am a MS patient....had symptoms since 1998 while in Africa.... i am a doctor with Doctors Without Borders and in Africa 10 yrs. it was brutal with the heat and the fatigue... couldn't manage well my dexterity was shot becaquse of the numbness in my hands and fingers. finally got diagnosed in 2015. have had so many symptoms since. have RRMS and and are taking a lot of meds. was methylprednison but it plays havoc on kidneys and liver. so they started me on Copaxon. no side effects as such. Also i am on gameapetin for pain....not addictive and really helps with pain....300-400 mg......Also Neil do you experience puritus ( severe icthing ) really annoying especiall at night. Gabapentin usually takens care of that somewhat. well i know you are there and i don't feel so alienated and alone.....so i will quite babbling and say we shall talk again and Merry Christmas and a New Year 2017 to you and your wife. we will go forward and fight this thing. Goodnight Neil and have good holidays.
Dear Bode,
Thank you for your comment, its really appreciated. It's very interesting to hear about your work in Africa, but I am very sorry to hear you had to give up something that I'm sure was close to your heart because of this dreadful disease. I get numbness in my finger tips from time to time especially when I'm hot, but fortunately for me no other symptoms in my hands/arms etc. All of my symptoms are in my feet/legs and I can really relate to the numbness you experience. For me, in the mix also I get tightness, burning, humming, buzzing etc.. its most unpleasant but I've become accustomed over the years.
Ok so RRMS you will be experiencing relapses with remission, at which point they'll probably administer Methylprednisolone to help reduce any inflammation, I've had this once by IV across 3 days back in 2013 but not since. To be honest, I could do with a dose but the hospital doesn't seem keen on giving it to me. I'm in a transitional stage to SPMS.
I've been on Copaxone also but I took myself off it because of side effects (injection site reactions). How are you getting on with Copaxone?
I've not experienced the Puritus that you talk about, and I believe this may be very fortunate on my behalf.. it doesn't sound nice at all. Are you able to take something for this which take the edge off?
I was on Pregabalin which is a very similar drug to Gabapentin but I've recently come off that also. I wasn't dealing with the side effect very well and decided to come off all drugs and "reset" my body (as it were) to a clean slate. i'm still in the process of doing this actually because it's not been an easy journey.
I'm glad you don't feel so alone and Alienated, I started this channel not only to act as a timeline to look back upon myself, but also for people such as yourself so that you are able to relate. I think its important for people with this frightening disease to be able to connect with others, so they don't feel quite so alone. One of the major problems with MS is its a "hidden" disease, I'm sure you've heard people say to you "you look well today" .. its because you do LOOK well, but they're can't understand or appreciate HOW you're feeling which, quite frankly is changing on a daily basis, perhaps even hourly. This isn't their fault though. I understand Bode, and please don't ever think for a moment you're babbling.. please feel free to contact me anytime you like. My channel is getting fairly busy as of late, I may be a day or two getting back to you, but rest assured I will write back always.
I hope you had yourself a nice Christmas, and I wish you a very Happy New Year.
I've included my MS Vlog Playlist below just in case you've not spotted it, there is just over 20 videos in there now which you may find interesting should you find the time.
th-cam.com/play/PLKh4CtwH9cEUJcntnXWXyo-OtqnMccwWU.html
Take care,
Neil.
Thanks Neil for reply and advice.....yes my wife and daughter did not understand the invisible disease as it is stated sometimes, because you look well and yet invisibly you are suffering. some call me lazy because of the fatigue." oh you go to gym to exercise. you are not sick." But my neurologist feels exercise will help with the nerves rebuilding somewhat and it makes me have purpose and delight to do it. But i do it around 4:30 am when my energy is at highest. come home to eat breakfast and then i lay down. I rest about one hour then write answers to emails and you tube viewing. i am finding the drugs that are pill form for relapsing are better tolerated than injectable. The drugs have come a long way since the beta-one drugs so i am moving to pill form. probably Gilenya. Also Gabapentin works better and is not as addictive as percocet/ hydromorphone etc. Also Gabapentin works for the iching. Numbness and pins and needels started in the feet. Moved up the legs as time progressed. Have spasms in feet, calves, hamstrings, buttocks, upper back and near shoulder blades. Spasms between ribs and right side of face. But Baclofen works wonders on the spasms. Prednisone works wonders too but after 2 months need to come off and give kidneys and liver a rest. usually they don't want to use it more than 3-4 times a year. That is why Gilenya and other drugs for relapses is better than prednisone. But prednisone did clear my optic nueritis in 2 months. These symptoms come and go and not all return at once but i have quite a few at one time. The pain in the legs and upper back is so relentless that some days I don't want to move out of bed but I have to force myself. I feel terrible that my family has to put up with me and this disease and at times i feel like isolating myself from society so I don't have to be seen. My wife works for the Government so she is quite busy but will retire soon. Daughter lives with us from an abusive relationship with husband, so she has twin 4 yr olds so is busy as a teacher and the kids. a lot of stress around the house. That and upper respiratory sends me into relapse. Well i won't keep you Neil...Hope you and your wife and family had a Merry Christmas. And Molly too...I pray for her because I love my animals too and will do anything for them. Talk later Neil.
Thank you Bode for coming back to me, and it very interesting to hear about your challenges with MS, I appreciate you sharing them. It does sound that you have a very busy/stressful (at times) household and I'm not sure if its the same with you, but I find if I'm up and about doing things constantly all of the time, it about breaks me. I get to the point whereby I can barely put one foot in front of the other, having said that everybody is different though. My MS is fairly progress (transitioning to Secondary Progressive) and my mobility isn't so great, sometimes its good though.
We did have a good Christmas thanks, albeit quite a busy one. I have to say I quite enjoy the quite period after all the festivities have calmed down :) I hope you have a Happy New Year Bode.
Thank you for your kind thoughts and prayers for Molly, in actual fact she never ceases to amaze me! She's actually pretty good at the moment and eating exceptionally well. I'm hoping to do another video of her perhaps in the new year.
Regards - Neil.
That's great no pain! Merry Christmas!
Hi Angel - Yes quite amazing actually when I compared it to yesterday.. Because my pain changed so radically the very next day I thought it only decent to make an UPDATE video to let everybody know. Merry Christmas to you, and a Happy New Year.
Neil.
merry Christmas Neal!
Merry Christ to you also Teresa, I hope you had a good one! Happy New Year to you :)
Hi I have what you get I hardly sleep and the pain in my right leg is unbearable I dont sleep for 3 days and when I do sleep its 2 solid days and none of my family can wake me up and I have no memory of whats happened, I keep a fan close by as it seems to stop the pain from moving round, my doctor has just put me on pills for restless leg syndrome, I was in bed gor 3 days over Christmas cos I was just exhausted and it does make you think really negative and nobody understands, love your cat by the way, I have 5, I took a stray in who was pregnant and I helped her give birth and we had 4 little kittens and I kept all of them my house belongs to my cats I only need to look at them and they make me smile every day, I know wgat your going through and its horrible and makes you want to cry I get really irritable and snappy, I just want it to go away I cant feel my hands or feet my speach sometimes slurrs and I fet brain fog and sometimes cant swallow, its shit and never goes away, I really hope you get better. :-)
Hey Sue - thank you for your comment! FIVE CATS!! Wow that's amazing to here, and yes I bet the house does belong to them instead of you lol. No, but seriously that is so nice that you're caring for them.. they need you and they give you so much joy.. absolutely brilliant!
The pains in the legs really do take over your life don't they, I wish they would go away I really do. Even now as I'm typing this message to you my legs are tight and numb.. its horrible and the thought that I've probably for this now for the rest of my life isn't a nice one. I get you Sue, I really do understand where you're coming from.
Pretty much now every night I have anxiety about going to bed, will I be able to sleep? I have to be up at 6:30am, but I don't go to bed until midnight.. I wait until I'm really really tired in the hope I will drop off to sleep a bit better. Even now it 11:18pm uk time.
I hope this message finds you feeling a bit better Sue, feel free to pop back any time for a chat.
Regards - Neil.
@@NeilBradleyMS hi Neil, I have not been officially diagnosed although I am suffering from all the same symptoms. It all started last May when I had a routine eye exam at specsavers. They did an OCT 3D Optical Imaging on my eyes without my consent. I had a major reaction which I believe was Optic Neuritis which they disputed. I thought I suffered from fibromyalgia but now believe it was a benign multiple sclerosis and the eye test triggered off this chronic problem in both my eyes and chronic pain in my body. Like you said, it changes from day to day. Shortly after I fell and broke my arm last winter and hands and fingers hardly work. Chronic pain in my neck and my back getting worse. Can't use either arm very well and sometimes my feet go on me for an hour or two and then come right. Be interested in your feedback. Funny, the hopeless 'professionals' here say I am ok.
Hi Carol, I’m sorry to hear about your problems. It’s so frustrating not being able to get to the bottom of things, especially when symptoms get worse and then get better for no apparent reason. You never know whether you’re coming or going. Have you started the quest for answers yet? It took me just over a year to get diagnosed and that was back in 2013. My diagnosis is now up in the air and they’re not sure what’s wrong with me as recent scans and tests have come back clear. Good luck with trying to find some answers.
@@NeilBradleyMS thanks Neil for answering my comments. I really appreciate you sharing your journey with MS. Being educated about what is going on can take a lot of fear out of our daily experiences, which can vary dramatically from day to day. For me the eye pressure, pain throughout my body and chronic fatigue which seems to come on suddenly. It's good not to feel alone. Thanks again for your reply. Great job you are doing!
Thank you Carol, it really is a daily struggle isn’t. I’ve found one of the hardest things is educating people that you’re “no longer up to it” because of the pain and mobility issues. Look after yourself.
We all appreciate you, too. Hope you feel better.
Thank you Ana - that's very kind of you. I hope you are doing ok?
Regards - Neil.
I am, actually. I had to go in to the hospital a while ago, and they gave me some meds. Been resting. So I've felt pretty good the last few days, besides being sick.
We're at a level 2 snow event where I live, so outside isn't much of an option for me.
It goes up to my knees in some places.
Well, I'm glad to hear you're feeling ok .. It's funny you should say that about the snow because I live in the UK and only today they've given out snow in the next few days! Secretly I'm quite looking forward to it, but I seriously need to watch it, don't want to end up in A&E, my walking is bad enough lol.
Be careful out there. Snow is fun the first few days, but then it's just cold, hard to walk in, and dangerous.
You're absolutely right there Ana, thanks I wil.. and you too.
So glad you are having an "up"day. I hope you have a Merry Christmas......
Thank you Sunny,
Yep for sure.. certainly a much better day than yesterday. I hope you had a very Merry Christmas also, and a Happy New Year.
All the best - Neil.
and Merry Christmas to you too Molly!
I'll be sure to pass that on, thank you Willo.
I hope you and your family had a really nice Christmas, and I'd also like to wish you a very Happy 2017.
Best Regards - Neil.
Good morning Neil. Happy Christmas Eve 2016. Glad you're better this morning, and you had a solid 5 hours sleep. Hopefully, you'll be okay for Christmas Day. I'm pleased that people's comments are helping you. But you help others too, so it works both ways.
Thanks Dean.
Hey there! Thanks for your very candid videos. I have primary progressive. I'm scared. Feeling hopeless. I've still got a 16 year old at home and my husband died 10 years ago. I'm losing my home, already lost my job, I'm ready to give up. Any advice? I think I'm depressed 😔 thanks to you though, I don't feel so alone. Prayers 🙏❣️
Hi Brielle, my wife actually read out your comment and as she did we felt for you so very much. What a terrible situation to be in, I can’t imagine how scary it must be at the prospect of losing your home. Are you in the UK? I’m terribly sorry to hear you have lost your husband. I’m guessing you’ve lost your job through having your illness😔 I’m afraid I don’t have much advice apart from, my wife and I would be more than happy to chat to you anytime. You never know, we may be able to come up with a plan or strategy to help you, something perhaps you’d not thought of. Ill leave that thought with you, absolutely no pressure. I’m super happy that at least by watching my videos you don’t feel quite so alone. Sending healing thoughts and prayers your way my friend. 💞🙏
Neil thank you for your continued vlogs of your journey with MS. I still have no official dx for MS but we are getting closer and all the symptoms are still there with new ones making an appearance as well. Scheduled for another brain MRI this week to see if new lesions. Have you had any tremor issues? I know everyone has their own unique experience with MS.
Hi Nell.
I'm glad you're finding my Vlog useful in some way.. Isn't it frustrating knowing that you've definitely got something wrong with you, you might have even done the research yourself online but waiting for the Medical guys to catch up just feels like an age. And then you have the added anxiety of wondering if anything will show up with the all tests that they do.
I don't think I've had any Tremor issues Nell.. could you describe what the tremor is like for you and I'll let you know if I've had this. Usually in a morning both of my legs feel like they're plugged into the electricity supplier, humming and buzzing, this could be similar.
Regards - Neil.
it's been confirmed I have MS don't know if it's rrms or what I did have a episode a year back not as severe as this episode but it did go away any idea as if what type I may have
I just feel so alone and terrified
Hi Wade - That's a real bummer, sorry mate.. I know it really sucks. I'm surprised they've not given you the type of MS because as a rule it has to fit in to usually one of three categories, they should have told you this really. I would say you need to push them into giving you a correct diagnosis because just MS isn't really enough.
The most common type of MS which a very high percentage of people with MS are diagnosed with initially is Relapsing Remitting MS (RRMS). This is where you will have a relapse (an attack of new symptoms) .. these symptoms will manifest for a random period of time, but then you will notice they will slowly start to get better. This is the remitting part of the RRMS, so the symptoms are going into remission. Usually when you have a new attack (relapse) you would seek medical help and be put on (usually) a small course of steroids, these are powerful anti-inflammatories which help calm the relapse down. For me, I had these over a course of three days in 2013 and they helped considerably, my drunk walking wasn't quite so drunk if you know what I mean :-).
Regards - Neil.
I can totally appreciate this wade .. it's important to surround yourself with your family, friends and loved ones whilst you're feeling like this. You need time for it to sink in, and for you to come to terms with the diagnosis. Whatever you do, don't bottle it up and keep it all to yourself.. share your fears with your nearest and dearest, it will make you feel better just by telling somebody else about how your feeling. I know this, because I do it myself.. I'm fortunate to have an amazingly understanding wife who totally "gets" my situation.
Keep a journal and record any new symptoms, the smallest change in existing symptoms and how its all making you feel (scared), this is extremely important because it will help the Doctors arrive at the correct diagnosis for your MS and consequently provide the correct treatment and care. If it is RRMS, there a lot of treatments called Disease Modifying Drugs (DMD's) .. these don't cure MS because sadly there is no cure (yet), but what they do is slow down the relapses, some by up to 50-60%.
Feel free to pop back on here anytime if you want to chat.
Regards - Neil.
Oh, and one more thing.. if you want to understand a little bit more about how MS effects your body then please check out my video where I attempt to interpret MS and the effects it has on the body in simpler and easier to understand term. Link below for you.
th-cam.com/video/rGhoV3XQ3EE/w-d-xo.html&list=PLKh4CtwH9cEUJcntnXWXyo-OtqnMccwWU
.. And finally here is another link to the MS Society website which is EXCELLENT .. they provide amazing support. I've also left a link to the different types of MS so you can have a read.
www.mssociety.org.uk/
www.mssociety.org.uk/what-is-ms/types-of-ms
Dear Neil, glad to hear you are doing better today. Wishing you a merry Christmas. I always like to watch your videos, your are a very nice person if I may say so :-)
Thank you very much for saying so Martin.
Yes, the next day was considerably better and it just goes to show how this dreaded disease can change how you feel so rapidly. I hope you also had a really great Christmas, and I wish you and your family a Happy New Year.
Good to hear from you.
Kind Regards - Neil.
So happy that your feeling so much better, hope it stays that way for you and you have a amazing Christmas x
Hello Jaime, and Thank you I really appreciate your kind words. So far so good, since that really bad day I've been ok but I just never know when its going to get bad, and how long its going to last. That's when the fear kicks in for me, and I'm sure for a lot of other too. I hope you too had an amazing Christmas, mine was busy but enjoyable. Happy New Year to you also. x
What do u do to get rid of the pain. My lower back killssss for five years
Hi Andrew, the pain is terrible isn’t it. I’m really sorry you’re having to deal with this. I take Codeine and Paracetamol during the day for pain but honestly, I believe my body has built up a tolerance to it as it doesn’t seem to do much. I also get lots of nerve pain in my legs, but I don’t take anything for it as this particular class of drugs also worsen my already poor mobility. I hope you find something that works for you Andrew.
Great update! I can definitely tell that you´re feeling better, just by looking at you. Hopefully you still are!
Oh and hi Molly! Merry Catmas to you
Hey Rikke! Thanks, yes definitely feeling loads better the next day which I found absolutely amazing considering how much pain I was in the previous day. Just shows how MS can change from day to day can't it. Yep, still ok thanks.
I'll be sure to "mew" Merry Merry Catmas to Molly lol :)
I hope you've had a good Christmas, and I wish you a Happy New year for 2017.
Best Regards - Neil.
That´s so good to hear! Crazy how it can change, for sure.
I had a very nice and relaxing Christmas, thanks :)
happy Christmas and glad to hear you are feeling a bit better today😃
Thank you Wade - Merry Christmas to you also and I hope you have a great New Year.
All the best - Neil.
thanks Neil and happy new year to you as well my numbness is starting to push down from my chest now which has been a relief now just to keep hoping it will completely go away time will tell hope you are still feeling well
Fingers crossed for you Wade. For me the TM symptoms got really bad and peaked, stayed like it for a while then gradually started to calm down and fade. You'll have to be patient though because this happened over quite a long period of time, a few months if I recall.. back in 2007.
I'm not feeling to bad thanks Wade, although I just felt like spending an hour in the garden doing some light work. I need to make a start raking the 10 billion leaves that our Apple Tree's have dropped now that the cold weather is upon us.
Regards - Neil.
thanks Neil it's been a very slow process but I've learned patience is best with this I have my good days and my bad days but I make myself try and work out at least every other day and it seems to be improving from it just got to keep moving as much as possible and stay positive😃
Good to hear Wade.. Very important to maintain a positive frame of mind, difficult at times I know. All the best.
Neil, pain was (& still is) my main symptom starting in 2011, severe nerve pain in arms and legs, worse after activity.....never goes away. I’m wondering if this is more common in spms/ppms than rrms ? Is yours worse after activity? Thank you for sharing, you’re helping so many including myself.
Hi Karen, I'm so very immobile now that activity isn't a word in my dictionary :) However, not so many years ago I was very active and I do recall when I'd been doing several hours of gardening (for example) my symptoms would flare up, but not significantly. I'm not so sure it matters which form of MS you have, it's a possibility I suppose. I'm so please you're finding my videos helpful in some way. I hope all is well with yourself, Regards - Neil.