Multiple Sclerosis - I'm Having a Flare Up!
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- เผยแพร่เมื่อ 28 มิ.ย. 2024
- Multiple Sclerosis (MS) - I'm Having a Flare Up!
(VIDEO 8)
Yesterday (Mon 11.07.2016) I noticed my existing MS Symptoms were irritated and more annoyed than what is 'normal' for me. Looks like I'm having a Flare-up! - In this video I describe how it all started, by doing absolutely nothing basically.
Early Symptoms started 2007:
1. Numbness.
2. Burning.
3. Tingling, humming, buzzing.
4. Skin sensitivity or Altered Sensation.
5. Squeezing sensation especially in the Legs.
All of the above across my Feet, Legs, Hands, Tummy and Back.
New Symptoms starting Feb 2012 (Major attack)
1. Weakness.
2. Spasticity.
3. Abnormal Gait (walking as if drunk).
4. Extreme lower back weakness.
5. Severe Chest Pain.
6. Anxiety.
7. Tremors.
If you've enjoyed this video and you feel that if may help another person in some way, please consider SHARING it on your social media - Thank you.
Don't forget to check out the other videos in my MS Vlog Playlist.
• (MS) My Life with Mult...
![[UNCUT] ฝันรักห้วงนิทรา | EP.8 (4/4)](http://i.ytimg.com/vi/RDYJYiDwsj0/mqdefault.jpg)
Bingo... that physiological part...when our mind wonders how far this new pain will get.
Hope you are feeling better soon Neil! I had the same issue a few nights back, feet and legs on fire, burning and so much pain. I went to the neuro today, she is not going to be quick to diagnose me with MS and wants to do further testing - an MRA this time and follow up with her in 6 weeks. I'm gathering from many vlogs or posts that I read from others that say it took them a bit if time before their "official" diagnosis.
You are telling my story. You have described so many similar symptoms. The plaster description was spot on.
Hello Gil - Oh yes the sensation of my legs feeling like they're in plaster casts, or perhaps set in concrete that has dried. I've got this sensation 24/7 across the whole of both of my legs. I get very tired of it.
I'm guessing you've got very similar symptoms Gil, I'd be interested to hear about them - Neil.
I pray for you. I dealt with the worst flare last night. My legs and face and feet felt like they were burning. The pain is so intense I understand and I hope you get less of these symptoms.
Hi Tremaine, Thank you, how are you feeling now? A bit better I hope. I don't suffer with any facial symptoms but burning in the feet and legs.. I totally get where you're coming from! I'm used to my feet burning even when they're quite cool to the touch, but what I do struggle to cope with is when my legs are bad.. especially my thighs. I've been known to put my shorts on even when its not particularly warm just to try and keep my legs from getting any angrier (if you know what I mean). Are you diagnosed with MS? Hopefully if they haven't already, you're symptoms will start to calm down. Thank you for the comment, and take care - Neil.
+Neil Bradley I've been diagnosed since February I've been on Copaxone the daily injection for 5 months now. When it's hot my symptoms are the worst. For me it's just been an adjustment. I get so frustrated and stress makes it worse so yoga has helped so much. Hopefully your feeling well today. Thanks for your reply.
Ahh right, how are you getting on with the injections, do you get any injection site reactions? The temperature has a lot to answer for with MS, the conduction of signals through the nerves are reduced when the body temperature increases. Yeah, I'm feeling ok at the moment thank you very much.. apart from the usual chest pain which the Dr's now seem to think is "classic MS". I'm diagnosed RRMS but my MS Specialist now thinks I'm in the transitional phase to SPMS (Secondary Progressive). I'm not sure how much research you've done with MS and temperature, but you might be interested in Googling "uhthoff's phenomenon". This was something that helped considerably towards my diagnosis. I've actually made a video about it as well, it's number 4 in my playlist. (link below)
Nice to talk to you, cheers - Neil.
th-cam.com/play/PLKh4CtwH9cEUJcntnXWXyo-OtqnMccwWU.html
+Neil Bradley I deal with injection site reaction everyday. It sucks but I'm reading more on my disease and I live in a hot area so that it my biggest issue right now and fatigue but thank you for the info. Stay healthy !!!!!!
Thank you!
The biggest thing that triggers a flare up is stress. You mentioned your first flare was shortly after your break up. Major upsets like that seems to trigger major disease to come out if they are lurking inside you.
Absolutely!! I agree entirely with you there, it was a time of not only EXTREME stress but CONTINUED extreme stress. It went on for several years and there were children involved also, at times I was a complete wreck and I have absolutely no doubt this was a major contributory factor in my illness.
Hey Neil!! I'm sorry that you're not feeling very well. I hope that you recover and get pass this flare very soon. Take care of yourself.
Thanks Janet, I appreciate the thought.
Hi, you’re symptoms are so like mine. I’ve had MS for about 12 months now and I’m still trying to cope with them on a daily basis. Like you say we don’t look ill to people and the ‘drunk’ mobility is horrid. My ms started showing when I woke up and the bottom quadrant of my left eye was like a shutter on a window and during that day I lost vision in that eye (optic neuritis). A course of steroids gradually got the vision back it that eye but only in black and white. A bizarre thing to happen, one eye was black and white the other with normal. That got back to colour eventually although it was a ‘washed out’ colour with reds looking orange and so on. But you’re explaining of conditions like walking, or stumbling, is great to here, I’m not the only one suffering. Having MS has been an eye opener to me and makes you think that there are some really nice people in the world be old, young, male or female people do care and open doors for you, offer to carry bags for you.
I read somewhere that has always stuck in my mind “I’m in a club a club that no one else wants to join”.
I’ve only got as far as this episode but will be watching from now on.
Thanks
Hi Bill,
The symptoms that come with MS are hard to deal with aren't they.. yes one of the worst is the drunk walking which for me comes from lack of balance due to weakness in my lower back. For me this is progressively just getting worse and worse, and my mobility is very restricted now.
The Optic Neuritis you experienced in your left eye must have been very traumatic, but I'm so pleased the course of steroids accelerated the recovery for you and vision has almost been restored. Hmm, the black and white in one eye vs colour in the other must have been hard to deal with, but at least this has rectified for you now.
I'm so pleased you're find my explaining of difficulties good to hear, and I know not in a bad way. This is one of the reasons I started my channel, because I wanted to reach out to people such as yourself who are having similar difficulties, to make them feel not quite so alone with the condition. MS is a very lonely illness, it can quickly lead to depression.. so remember!! You're not alone with it, there's a lot of us all in that same boat.
You are absolutely in a club nobody wants to be in that is for sure, I hate being in this club but like you don't have much of a choice.
I'm so pleased your enjoying my videos, plenty more where this one came from. Check out my playlist "My Life with Multiple Sclerosis", there's about 55 videos in there should keep you going for a while lol. They are listed in chronological order, my first ever video I recorded in March 2016.. the recording is in terrible light, but I've learnt a lot since doing that one. I hope you enjoy Bill, and its very good to hear from you.
Regards - Neil.
Neil Bradley thanks for your reply.
I just reread what I had written and saw that I’d said I had MS for 12 months it should have said 12 years. I started with RRMS and was soon upgraded, or downgraded, to have SPMS. So at least no relapses just a gradual deteriorating of symptoms. One thing that I cannot put down to MS is my inability to read things before I post them lol
Don’t worry Bill, I tell myself to reread my messages before hitting that send button. But somehow, I always forget lol. I too was RRMS, I think the hospitals are far too quick to slot people into that category. I don’t believe I’ve ever been RRMS simply because 11 years ago when it all started my relapses were about 4 - 5 years apart. I’ve always thought I’m a more progressive form of MS, but the hospital don’t. I beg to differ. Like you I’ve been up/down graded to Secondary Progressive which I feel is a bit more accurate but honestly, I fit most of the tick boxes for Primary Progressive, scary as that sounds to me.
I never comment on videos but this is my second on yours. Lol I cried as my husband and I watched and you describe me. I stop to pray for you, Neil, because I know the constant pain, spasms, balance, etc. When you said you can’t tell if your feet are cold or hot it made me laugh, though, because I thought I was the only one who has to look to see if I have socks on. Be blessed, friend.
Hi Barb, I'm so pleased my videos inspired you to comment.. its always lovely to here from people such as yourself. Yes, I've lost count the number of times my feet have felt painfully cold and in fact they're hot to touch (or the other way around). And also the socks thing too, but also with foot wear.. I quite often have to look down to see if I've still got my slippers on, or quite often one slipper will come off and I won't know about it until I actually look. That's the problem with having numb feet I guess. The pain, spasms and balance are really significant at the moment and it is getting me really down. I'm not sleeping at night either, because the burning pain wakes me.. sometimes I just don't know what to do with myself. Thank you for your kind thoughts and prayers Barb, blessings to you. Neil.
Neil Bradley
I’m so sorry that you’re suffering too. Hopefully by now you’ve shown some improvement? I use lidocaine patches for my back, joints, muscles lol And my burning, cramping feet were horrible. Constant from April through December. Only help is to cut the patch and put where it hurts per my pain doctor. Tried it ? I hope you don’t mind. I get tired of suggestions that are very obvious to me. This may be to you! Good days ahead.
Thank you Barb, I appreciate any thoughts and suggestions.. I really do. I’ve not tried the patches, they sound good and I’m glad you get some relief from them. I’m due to go to a pain clinic soon (still waiting for the appt) and they may well suggest something like this. There’s not really been any improvement since this video, I’m afraid my MS is progressive which just means it gets worse and worse. Rarely do I see a good day, occasionally. Currently my right foot is cold to touch, but is BURNING so bad!! I really tire of it all. Thank you for commenting and I hope all is well with yourself, well within reason (you know what I mean). Take care.
You are a brave and wonderful man. Pain can wear a person down after a while.
Elsa Kristian Thank you, and yes it certainly can.
Hi Neil,
I had a friend with ms. I remember her mentioning that when she would eat chicken she'd have flare ups, said it was an enzyme in the chicken. Not sure if that can help, but I wish you good health. God Bless!
Thanks you Barbarba.. strangely enough whenever I have a flare up I do tend to think about what I've recently eaten. Makes me feel better if I've got something to blame lol.. I appreciate the tip and will watch out for it nevertheless. God bless to you too :) Take care.
i have r and r ms and i get that feeling all the time. stay strong!
Hello Teresa, thank you for your comment and for watching my video. I hope you are managing and coping with your RRMS okay, you take care now and feel free to pop back here any time. Regards - Neil.
Thank you for responding. Even though I have been on tysabri for 8 months, I still have trouble managing my ms. Maybe im one of those people that ms meds dont work for. Iv had 5 steroid infusions this year. I have balance issues , my speech is slow off and on my short term memory is horrible, i have a tremor in my right hand. Last year in march i ran my first 5k, sept i relapsed and now i use a cane or walker. I was doing well from my first infusion this only up to may, after that my symptoms bother me often. Iv been in a relapse since july. Ms does mess with your head. I have fear and anxiety about how long this one will last. Every day we fight to maybe see some glimpse of normality, but that day never comes. I think because ms is an unpredictable diease, it allow s a window of hope to open. The good days justify that.
Hi Teresa - I'm not sure how much you know about MS Meds.. Tysabri is what's called a DMD (Disease Modifying Drug) which helps reduce the number of relapses you have with MS by roughly half. It's important to note that it doesn't stop them completely but it does help. Five infusions of steroids is pretty good going (well not really good), the Steroids will help reduce the inflammation and damage caused by the MS and hopefully speed up the recovery. It's certainly sounds like you're having your fair share of MS hassle at the moment, I really do hope things improve for you very soon and this long term relapse DOES ONE. I haven't relapsed now for about three years, my symptoms persist and remain unchanged if not slowly getting worse. I'm now in a transitional state to Secondary Progressive MS. You say you ran 5k, what an achievement to be proud of. I used to love walking, I used to walk about 3 - 4 miles a day on my lunch break when I used to work.. alas that was a while ago. I can't run at all, I can't even jog on the spot I'll simply loose my balance and fall over.
MS is definitely very unpredictable and totally random, I find its very important to remain as focused as you can on the things you enjoy in life, your hobbies. It's very easy to dwell on the horrible symptoms we have to endure and fall into a depression, you must try not to let this happen, difficult as it is. You take care Teresa, and its lovely to talk to you.
Hi, I started smoking medical Marajuana about three years ago. I'll smoke before going to bed, I'll smoke the kind that has mostly CBDs in it! So I don't get the high feeling as the THCs would do. But it sure helps me sleep the whole night through. I think that and the Baclofin helps too.
Yep, you wish others just could feel what your feeling.
I’m glad the Medical Marijuana is working for you. Sleep is one of the things I struggle with the most. And yes indeed, I feel there are so many people out there that simply wouldn’t be able to cope with even half my (our). pain🙏
It is so much worse at night. I haven’t had a goodnights sleep in months or maybe even over a year. I hurt all the time. And I turn and try to get comfortable but no luck. It wears on you mentally. No matter how much you try to cope with it the pain never goes away. It’s always there like a bad toothache. The pain is worse but like a toothache it is always there reminding you that there is nothing to make it go away. Not being negative but just the truth of how I feel with the pain.
Hello Raven, I totally get that and no your definitely not being negative. Tooth ache is the perfect way to describe it and my wife has said the same thing exactly. Lack of sleep is terrible, it the same for me. I’ve not had a decent night for well over two years now I think. Bedtime is somewhat an anxiety now for me because I know the pain will get worse, and the weakness. And that’s without all the bladder issues as well!!🤦♂️
Its very important to change your thinking with reguard to meds. Theres many other natural ways to get rid of inflammation for example. I suggest you start taking turmeric WITH infused pepper pills daily.
I have a hard time dealing with the side effects of some of the MS medication so I tend to balance medication and symptoms with quality of life. I'm becoming more interested in herbal supplements, thanks for the info.. appreciate it.
I have lumbar spinal stenosis I get these feelings all the time plus electric shocks numbness burning n chronic back pain hand n arm pains dizziness wobbly walking hold on n use a crutch headaches blurred vision hate it on alot of medication plus only takes a little away I'm in a wheelchair when I go out but hubby as to push because my hands can't do it so know how you feel bless you sweetheart ❤
Hi Lucy, I'm so sorry to hear you're having to deal with Spinal Stenosis .. this must be terribly debilitating for you. Yes, the medication only seems to take the edge off doesn't it. Your husband sounds like a real star, as is my wife Teresa.. I don't like to even consider how life would be without them, they are Heaven sent. Many blessings to you Lucy, all the best - Neil.
I also have bulged disk at l4 L4 L5 from a car accident but I opted out of having the surgery. I had leg numbness from before the accident and burning sensation that you discribe. I was also told with my mri that I had a lesion. I used to experience burning in my hands and itching. I thought that I was possible allergic to the cold. idk I wasn't going to the doctors
I was told if I didn't get the Disk Bulge decompressed that it could lead to all sorts of other problems because of the nerve root its was compressing. I was already experiencing strange sensations which did in fact go away after the surgery, but the numbness, tingling, redness etc remained unfortunately which I now know to be the MS. I still get the burning in the hands, especially in the hot weather, that was caused by a lesion in my cervical spine which, I'm pleased to say has calmed down a lot over the years. Did you get the burning in the hands prior to your car accident?
Hey I was wondering if when you had your feet and leg burning if you itched at all, also if the redness was blochy. as well as if your feet have gotten so tight that your toes kinda curl in
Hey Jonathan.. It doesn't itch, I suppose the closest thing I can describe it as is really intense sunburn. The redness isn't blotchy, although I do get this strange phenomena whereby one foot will burn and be very red, the other can be totally cold. Weird. Thanks for watching.
I get feelings in my legs that make everything no matter how soft that touches them feel like they are being rubbed with a wire brush scrapping my skin very painful.
+Jessica Wilson I can relate to this also, hate the bed sheets on my legs but have had to get used to it over the years. Never gets any better.
Your videos are wonderful. I experience the same symptoms you do and its refreshing to meet others that feel the same way i do about ms. Its 535 here in Nebraska so i do apologize if its early there. Im looking to connect with others that experience the same type of symptoms that i have, yours are spot on. I am from Omaha Nebraska and see Mary Filipi in Saunders county who is a ms specialist.
Hey there Teresa, thank you for your kind words and please don't worry about the time difference.. feel free to message anytime. I get an email notification which I pick up and all being well reply within 24 hours (usually). Yes, it is indeed refreshing to talk to somebody who can totally relate to the same symptoms isn't it. To be honest that's one of the reasons I started this channel, it's a way of helping people. I'm from Derbyshire in the UK :)
Speaking of what it does to your head, I find this as well. I have good days and bad days, and that's fine with me. I'm used to that. But when the bad day stretches into a bad week it starts to take a psychological toll, and I start to wonder "is this my new life, is it going to be like this forever now?" Always eventually I do feel better, but I always know with the way MS is a progressive disease, the possibility is there that when a symptom starts it might not stop.
Hey Patrick,
Yep! I totally get what you're saying and I've been there several times. One particular event which I recall with great clarity was when the right hand side of my tummy was slowly but progressively going numb. It was very disconcerting and I said to my wife "I've got a feeling it will start on my left side soon" and sure enough it did. With me it seems to be the trend, symptoms start on my right, then progress to the left. Very weird! Then as you say, starts the psychological bit, how long is it going to last? Years later I've still got numbness but its not so bad, but yes I totally get you.
Regards - Neil.
have you tried the paleo type diet?
Hi there, no I haven’t. Honestly, I’m quite skeptical with regard to diets etc as there are so many professing to cure people of MS. I do eat very healthily, lots of fruit and veg, no junk food or takeaways. I don’t notice any difference to my symptoms though. Thanks for your message.
I also have tremors in my hands and feet and have difficulty doing alot. minimum energy. like I'm always so tired
It's surprising how it effects you isn't it? You seem to have a lot of the classic symptoms, have you been checked out by a Doctor yet?
+Neil Bradley.. no I have not I'm definitely going in. I posted a video today on my Facebook of my shaking. it's been happening for 4 days now. I'm ready to just be able to walk or do things with my hands. my name isn't John it's actually mindie. I just never logged out of my roommates youtube lol. I'm 27 years old
im soo so sorry thru this lots of things happen too u happen to me specialty people tells me dee you look find lots of people don't understand how ms is I think only people that
If only these people knew how we are hurting inside. It’s often not possible for them to comprehend the pain we endure simply to take a step. Walking is taken for granted isn’t it, it’s the most natural thing in the world, until you can no longer do it of course.
Good morning check this doctor Aaron l Boster he his in you tube
my mri was only lower back.
I'm guessing this is how you discovered the disk bulge right?
Hey bud it will pass soon hopefully stay positive. Gimme a shout if you wanna talk. Talk later Neil
Hey Kevin :) Cheers for that, no worries.
I put ice packs on my feet I get crazy Charlie horse in feet I agree y is it always 3 in the morning
Hey Gwen,
"Charlie Horse" I had to Google that one lol.. ahh muscle spams I see yes, always worse at night time isn't it. It's as if the body goes into a different "mode", this doesn't just happen to me at night though. If I simply "nod off" on the settee for ten minutes, upon waking my feet/legs can be horrendous!!
Regards,
Neil.
AAaron Boster MD look for him in you tube Neil hello listen to his video how you doing look at his videos he's in Columbus Ohio I don't know if you able to come to United States just look at his videos
I wish I could send you not video I'm shy but not talkin well talkin so I don't need to if you go to Facebook Messenger I could do it
Hello Dee Dee, please see previous comment for Facebook details. 🙏
Facebook details don't see it
Hi Dee Dee, that’s ok. If you search for my unique Facebook ID “neil.bradley.37” you should find me.
Neil.c.bradkey 37
That's what I would