Hello Barb, Thank you .. from what I can tell I seem to be the exception to the norm. I'm due to see my MS nurse next week and will be raising it (again).
Hi Neil, I am so frustrated on your behalf, but also glad to hear that there is at least talk about referring you to an MRI now. I assume you haven´t talked to the nurse just yet, but I am crossing my fingers! Just keep pushing. Also I am glad that an occupational therapist will be coming to your house. Definitely sounds like a good idea. It takes months here too, but it will be well worth it I am sure. Have you heard from them yet? Positive vibes and hugs from me!
Hi Rikke, occupational health visited a while ago now and since then I’ve had grab rails, bath seat, step etc fitted in the bathroom and a few other things around the house. They felt a bit strange to start with but now we wouldn’t be without them. Yes I’m going to keep pushing for an MRI. Nice to hear from you, hope all is well.
Oh that´s great. I am sure the adjustments and aids make both you and Teresa feel safer about you getting around the house. All is well here, thanks. Still pain free, going to a physio clinic to work out twice a week, taking the same meds and yeah, things are good. I am off to the MS hospital in 8 days and will stay for 2 weeks. It´s supposedly amazing and I am sure I will learn a lot and benefit from talking to all the other MS patients, so that will be interesting. Take care! xx
Good to hear things are going well for you Rikke, the MS hospital sounds very interesting. I look forward to hearing how you get on there and what you learn from the experience. Take care. xx
lovely wife Neil. Wonderful spirit she has. Great to have her advocate with you and continue to support you. A woman's touch I call it. I get MRI's yearly when I have had problems but the neurologist wants to see and map out the progression and to study if changes need to be made to the therapy and treatment. it definitely gives peace of mind to know the issues. Also yes grab bars a necessity. i didn't feel I needed them until one day taking a shower I turned around in the shower next thing i am laying on the floor of the bathroom. quite a nice bruise on my back and I had to go to the hospital to get checked because I am on blood thinners. So better to be safe than sorry. Nice to see you neil and Theresa and say hi to Molly dearest. have a good day until we meet again.
Hey Bode, and thanks.. I think she's amazing and as you say, a wonderful spirit.. I'm not sure what I'd do without her. Yes, like yourself I've been told by so many people they get regular MRI's to compare scans to previous year.. but not me! Hopefully that will all be changing soon. Ouch! I hope you didn't hurt yourself too much when you fell, sounds nasty. I feel (at times) very unsafe in the shower, even to turn around 180 degrees I have to hold on to the wall and I can quite often feel myself "going". I will indeed say "Hi" to Molly for you :) And yes, until next time Bode.. great to hear from you, and take care of yourself. - Neil.
Spending time with you both has made my day, again ❣ I know the news isn't good. Your spirits and love for each other shines through nonetheless. Wishing you well.
Hey there, and thank you so much for all your lovely positive messages, I really appreciate your feedback. I’m super pleased that you’ve found my videos informative. 🙏👍
I'm waiting on Aubagio, was suppose to get the Ocrevus, but insurance denied. I am hanging in there brother, and I hope you are too. We can't give in, and let it win.
I was watching a video not long ago where somebody was really struggling to get their insurance to pay for Ocrevus. I think it must be expensive! Hence they don’t want to pay out for it. So typical, they’re still happy to collect your monthly premium though. I’m hanging in there just Andrea, having a lot of troubles with my legs as usual. They feel like they’re just hanging from bits of elastic. I know what your saying about not giving in, but it’s difficult.
Neil you can self referer yourself to OCC therapy through your doctors, the receptionists either do it fir you or give you the number to ring it took over 2yrs for me to see the hospital one and she didnt even go into what I needed around the house, everything ive had done at home ive asked for myself thats also how I got my wheelchair, rails, bath step, perching chair it was alot quicker doing it this way for me, you look so much brighter in this vlog, think thats having your Teresa with you too, I havnt had an mri for about 4 years myself and I also have an old injury to the bottom of my spine after a car crash years back and ive asked tons of times if it could be ms or back injury and they keep telling me ms but im not 100% convinced untill I get another scan which wont be till end of 2018. I know its hard to stay positive all the time, sometimes I wonder how we all function at all at times but your doing great considering the pain your going through just keep telling it to pissoff thats what i do, Also Teresa I keep noticing how gorgeous your nails look im well jealous lol take care love Sue xxx
Thanks Sue, I’m confident leaving OT in the hands of my physio ladies is enough. Pretty sure they’re going to give them a bit of a “nudge”. It’s interesting what you say about your back injury, I think I recall you telling me about that before. It’s just makes you wonder doesn’t it, I just want a scan which will set my mind at rest.
I have all your symptoms and many more I’m sorting it through the gp I’m waiting for the neurologist and I’ve also been sent mustacle skeleton bad spelling ..I can’t have an mri due to a device I’ve got for my bladder so I’m worried I won’t ever find out
Hi Kerry, that must be very worrying for you indeed. The MRI scanners work by using very powerful magnets and hence if you have anything metalic in your body its not possible to use one. Pretty sure they will have an alternative though, possible a CT scanner. Good luck with your investigation, and thank you for contacting me.. please feel free to drop by any time. Regards - Neil.
@@NeilBradleyMS Hi Neil@ Apologies for the delay in replying. Having a break with Mum in Dumfries.ù I had bursitis in my knee for nearly five years, due to not been able to weight bare on my fight leg due to injury. No pain. But it grew like a mini pumpkin. I was sent to MKS physio. He was great. :)
Hi Nordonna, I haven’t had an MRI since I was officially diagnosed in 2013! I used to be on Copaxone (dmd drug), have a look at my video “I stopped taking Copaxone”.
Can you go to a different neurologist? I have sometimes two MRi’s depending on what is goin on with me. I’m in the US tho. Keep plugging along Neil. :)
Hi there, I’m about start Baclofen on the lowest dose. I’m a bit reluctant though because all it is is a muscle relaxant. And trust me, my muscles don’t need to relax anymore!🙈l. They already are so weak, I’ve heard Baclofen can make you feel very tired and make mobility even worse. Do you have any experience of the drug?
Neil Bradley Yes I’m on it now You just have to start slow but it will bring your mobility back and make it less painful to walk I haven’t been diagnosed yet But having leg pain and pins and needles I’m surprised they never offered you this before
That is very reassuring, thank you for telling me. One of my biggest problems is my lower back as it’s so very stiff. I have practically no balance because of this and consequently my walking is almost nonexistent. I’m always worried about side effects when starting a new drug, have you noticed anything? I once was on a drug which caused ringing in the ears (tinnitus) and that was horrible and very distressing. I suppose I’m always worried about this happening again.
Neil Bradley No it will make you a bit tired at first and maybe a bit dizzy but it wears off quickly I also take gabapentin Which I tried to cut down Big mistake I will just stay on it for now I do want to try cbd oil
Thank you so much, you’ve given me a bit more confidence to try it now. I’m at the point whereby my walking is so bad because of the stiffness in my back I’m going to be shopping for a mobility scooter.
Please tell me you have a shower chair this would be great for Teresa also with arthritis I’m going to be stern now lol You have to use these tools Neil don’t waste your precious energy
I can’t believe you haven’t had frequent MRIs like we do in the States. Praying for your family.
Hello Barb, Thank you .. from what I can tell I seem to be the exception to the norm. I'm due to see my MS nurse next week and will be raising it (again).
Hi Neil, I am so frustrated on your behalf, but also glad to hear that there is at least talk about referring you to an MRI now. I assume you haven´t talked to the nurse just yet, but I am crossing my fingers! Just keep pushing.
Also I am glad that an occupational therapist will be coming to your house. Definitely sounds like a good idea. It takes months here too, but it will be well worth it I am sure. Have you heard from them yet?
Positive vibes and hugs from me!
Hi Rikke, occupational health visited a while ago now and since then I’ve had grab rails, bath seat, step etc fitted in the bathroom and a few other things around the house. They felt a bit strange to start with but now we wouldn’t be without them. Yes I’m going to keep pushing for an MRI. Nice to hear from you, hope all is well.
Oh that´s great. I am sure the adjustments and aids make both you and Teresa feel safer about you getting around the house.
All is well here, thanks. Still pain free, going to a physio clinic to work out twice a week, taking the same meds and yeah, things are good. I am off to the MS hospital in 8 days and will stay for 2 weeks. It´s supposedly amazing and I am sure I will learn a lot and benefit from talking to all the other MS patients, so that will be interesting.
Take care! xx
Good to hear things are going well for you Rikke, the MS hospital sounds very interesting. I look forward to hearing how you get on there and what you learn from the experience. Take care. xx
lovely wife Neil. Wonderful spirit she has. Great to have her advocate with you and continue to support you. A woman's touch I call it. I get MRI's yearly when I have had problems but the neurologist wants to see and map out the progression and to study if changes need to be made to the therapy and treatment. it definitely gives peace of mind to know the issues. Also yes grab bars a necessity. i didn't feel I needed them until one day taking a shower I turned around in the shower next thing i am laying on the floor of the bathroom. quite a nice bruise on my back and I had to go to the hospital to get checked because I am on blood thinners. So better to be safe than sorry. Nice to see you neil and Theresa and say hi to Molly dearest. have a good day until we meet again.
Hey Bode, and thanks.. I think she's amazing and as you say, a wonderful spirit.. I'm not sure what I'd do without her. Yes, like yourself I've been told by so many people they get regular MRI's to compare scans to previous year.. but not me! Hopefully that will all be changing soon. Ouch! I hope you didn't hurt yourself too much when you fell, sounds nasty. I feel (at times) very unsafe in the shower, even to turn around 180 degrees I have to hold on to the wall and I can quite often feel myself "going". I will indeed say "Hi" to Molly for you :) And yes, until next time Bode.. great to hear from you, and take care of yourself. - Neil.
Spending time with you both has made my day, again ❣ I know the news isn't good. Your spirits and love for each other shines through nonetheless. Wishing you well.
Thank you Willo, glad we were able to bring a smile to you day. I hope you have a lovely weekend. Take care.
Yall are precious together. Your videos are so informative!
Hey there, and thank you so much for all your lovely positive messages, I really appreciate your feedback. I’m super pleased that you’ve found my videos informative. 🙏👍
Prayers sent your way. Loved your video. ❤️ cute couple
Hi Carmela, thank you so much! That’s very kind of you to say so😊 Blessings to you.
Good Morning Neil. I hope you are doing good. Love and prayers.
Hi Andrea, I’m about the same to be honest. I hope you’re doing ok.
I'm waiting on Aubagio, was suppose to get the Ocrevus, but insurance denied. I am hanging in there brother, and I hope you are too. We can't give in, and let it win.
I was watching a video not long ago where somebody was really struggling to get their insurance to pay for Ocrevus. I think it must be expensive! Hence they don’t want to pay out for it. So typical, they’re still happy to collect your monthly premium though. I’m hanging in there just Andrea, having a lot of troubles with my legs as usual. They feel like they’re just hanging from bits of elastic. I know what your saying about not giving in, but it’s difficult.
Neil you can self referer yourself to OCC therapy through your doctors, the receptionists either do it fir you or give you the number to ring it took over 2yrs for me to see the hospital one and she didnt even go into what I needed around the house, everything ive had done at home ive asked for myself thats also how I got my wheelchair, rails, bath step, perching chair it was alot quicker doing it this way for me, you look so much brighter in this vlog, think thats having your Teresa with you too, I havnt had an mri for about 4 years myself and I also have an old injury to the bottom of my spine after a car crash years back and ive asked tons of times if it could be ms or back injury and they keep telling me ms but im not 100% convinced untill I get another scan which wont be till end of 2018.
I know its hard to stay positive all the time, sometimes I wonder how we all function at all at times but your doing great considering the pain your going through just keep telling it to pissoff thats what i do, Also Teresa I keep noticing how gorgeous your nails look im well jealous lol take care love Sue xxx
Thanks Sue, I’m confident leaving OT in the hands of my physio ladies is enough. Pretty sure they’re going to give them a bit of a “nudge”. It’s interesting what you say about your back injury, I think I recall you telling me about that before. It’s just makes you wonder doesn’t it, I just want a scan which will set my mind at rest.
I can totally relate to what you are feeling and saying. I'm getting worse too.
Thanks Andrea, sorry to hear your getting worse. No fun is it, hang in there.
I have all your symptoms and many more I’m sorting it through the gp I’m waiting for the neurologist and I’ve also been sent mustacle skeleton bad spelling ..I can’t have an mri due to a device I’ve got for my bladder so I’m worried I won’t ever find out
Hi Kerry, that must be very worrying for you indeed. The MRI scanners work by using very powerful magnets and hence if you have anything metalic in your body its not possible to use one. Pretty sure they will have an alternative though, possible a CT scanner. Good luck with your investigation, and thank you for contacting me.. please feel free to drop by any time. Regards - Neil.
I saw an MSK physio in 2012, and they refered me for my first MRI scan on my knee.
Hi Dean, do you suffer a lot with your knee then?
@@NeilBradleyMS Hi Neil@ Apologies for the delay in replying. Having a break with Mum in Dumfries.ù
I had bursitis in my knee for nearly five years, due to not been able to weight bare on my fight leg due to injury. No pain. But it grew like a mini pumpkin. I was sent to MKS physio. He was great. :)
dean200993 Hi Lee, oh I see .. that sounds painful. Glad you’ve got it functioning as best as can be. Enjoy the time with your Mum.
You too are family for me
Lol Teresa that was funny
Did you have an MRI in 2016? And I wondered if you got on any disease modifying medication?
Hi Nordonna, I haven’t had an MRI since I was officially diagnosed in 2013! I used to be on Copaxone (dmd drug), have a look at my video “I stopped taking Copaxone”.
Can you go to a different neurologist? I have sometimes two MRi’s depending on what is goin on with me. I’m in the US tho. Keep plugging along Neil. :)
Thanks Nordonna, not really. Yes I thought it was reasonable to have an MRI a bit more frequently. I’m on the case!
Do you take baclofen?
Hi there, I’m about start Baclofen on the lowest dose. I’m a bit reluctant though because all it is is a muscle relaxant. And trust me, my muscles don’t need to relax anymore!🙈l. They already are so weak, I’ve heard Baclofen can make you feel very tired and make mobility even worse. Do you have any experience of the drug?
Neil Bradley
Yes I’m on it now
You just have to start slow but it will bring your mobility back and make it less painful to walk
I haven’t been diagnosed yet
But having leg pain and pins and needles
I’m surprised they never offered you this before
That is very reassuring, thank you for telling me. One of my biggest problems is my lower back as it’s so very stiff. I have practically no balance because of this and consequently my walking is almost nonexistent. I’m always worried about side effects when starting a new drug, have you noticed anything? I once was on a drug which caused ringing in the ears (tinnitus) and that was horrible and very distressing. I suppose I’m always worried about this happening again.
Neil Bradley
No it will make you a bit tired at first and maybe a bit dizzy but it wears off quickly
I also take gabapentin
Which I tried to cut down
Big mistake
I will just stay on it for now
I do want to try cbd oil
Thank you so much, you’ve given me a bit more confidence to try it now. I’m at the point whereby my walking is so bad because of the stiffness in my back I’m going to be shopping for a mobility scooter.
I find it so bad you aren’t scanned once a year given how you are. I get scanned once a year and they are compared against one another.
I know, once again I'm going to raise this with my MS nurse when I see her around March time.
I miss your wife’s lovely blonde hair 👩🏼👀 👳♀️😥 ...I hope she’s doing well soon
Muscular Skeletal buddy x
Cheers Trev :)
Please tell me you have a shower chair this would be great for Teresa also with arthritis I’m going to be stern now lol You have to use these tools Neil don’t waste your precious energy
Thank you. Yes we’ve had a shower chair for quite sometime now.
Neil Bradley 👍