Multiple Sclerosis - Strange New Symptom!
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- เผยแพร่เมื่อ 13 เม.ย. 2016
- Multiple Sclerosis (MS) - Strange New Symptom!
(VIDEO 3)
Over the last couple of months, I've noticed a strange new symptom which I'm assuming is to do with the progression of my MS.
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...
Hi Neil. I got these symptoms starting in my legs for years, but has gone all over my body now for the last 2 years. I've done a lot of research into it, and what I have found helps me is to spray Magnesium Oil (magnesium chloride brine) onto the affected area. You spray it on several times a day, wait a few minutes, then wipe the salt residue off. It's a sign of magnesium deficiency in that part of the body. Many people are deficient in it, especially ones with MS, since we don't absorb our nutrients as well as we should. You use this, instead of taking the pills, because our body doesn't break the pills down as well as absorbing it into our skin. Also, another things that helps is liquid B12. Put that under your tongue for a few minutes daily, and when you feel your nerves jumping. I hope this helps. Have a great day! -Kristina
Thank you Kristina for this information. Strangely, I was awoken in the night with my left leg “jumping” in a repeating cycle. I was powerless to stop it. It was then I read your message actually, but haven’t replied until now. I take tablet form of both B12 and Magnesium, never quite sure if they’re doing me any good but I try anything. You know how it is. Interesting to hear about your success with the liquid forms though.
I totally understand. You get to the point where you'd do anything to stop the madness. I took magnesium pills for years, but didn't really feel anything. I take a lot of supplements, but found out that I was malnurished. Go figure. That's when I was told that I don't break down or absorb my nutrients as well as a healthy person does, so I need to take my supplements in liquid or powder form. I have seen a big improvement since doing that. I go down very quickly when I don't keep up with it.
That’s REALLY interesting, next time we order I’m going to look for liquid alternatives I think. 🤔
You can also buy B12 sprays that you spray on the insides of your mouth.
Hi Neil, you are a strong man. I like to watch your videos. I'm sure you inspired many others who watch you. God bless you and wish you great new year.
Hi Abeer, thank you for your kind words. I’m so pleased you are enjoying my videos. Blessings to you and yours for the new year. - Neil.
I just found your videos and have not yet been diagnosed but that twitch is something I have often I also have these terrible tremors mostly down my left leg but have now moved to my right so many of the symptoms you have talked about seem so eerily similar but yet my Dr keep brushing It Off and treating me as though I'm crazy and I'm scared because they keep getting worse to sell my body is attacking me from the inside the numbness the burning the team doing my feet feel like they're on fire but not at the same time thank you so much for making these videos
Hey Amanda, please don't let the Doctors brush this off.. you are most definitely not crazy, these symptoms are real to you. Perhaps you should say to them something to the effect of, you've been doing your research online and you think it could be a, b or c. I also suffer with a lot of numbness and burning too and I have an MS diagnosis. So please keep pushing them and don't let them fob you off, if need be get a second opinion. Please check out some of my other videos, because you may be able to relate to them. I've put a link to my playlist below where you'll find (to date) 51 videos all about my life with MS. Good luck, and if I can help in any way please just message me. Regards - Neil.
th-cam.com/play/PLKh4CtwH9cEUJcntnXWXyo-OtqnMccwWU.html
I know exactly what you mean with the sneeze sensation in your leg, it’s completely bizarre. My left leg causes me the most trouble as well. It’s to the point where every morning when I get out of bed I think how bad is it going to be today.
Hey Tony, yes I still get this today and it's just horrible .. it's like a build up of charge in my leg an then it kicks out. The insanely ANNOYING thing is though, when it's really bad it can be doing this up to 4 times a minute, yes every 10 - 15 seconds SERIOUSLY!! Drives me INSANE! I am having some success with Muscle Relaxant drugs such as Clonazepam or Diazepam, they do calm it down and I've actually had several days when it doesn't happen. They are powerful drugs nevertheless, so before trying them serious thought must prevail. Oh, I also meant to say it only seems to happen when I'm tired and lethargic, when I'm active during the day it's never a problem.
Yes. I was diagnosed with ms 4 weeks ago from my neurologist. I'm waiting to now hear from the ms clinic. I get those odd feelings in both my legs. I've had pins and needles constantly and numbness in my left arm since easter last year.
good info, thanks
+Dena Hey Dena, you're welcome! Plenty more videos about various other MS topics if you have the time. Check out my "My Life with MS" playlist. Cheers! - Neil.
I feel this way but I haven't been diagnosed yet. I feel like I'm going to lose ask control of my Arms & legs. Awful feeling!
Isn't it just an awful feeling, I absolutely hate it!
Hello Angel.. and thank you very much for commenting on my channel, I really appreciate.
I don't get this "loosing control" feeling very often, but when I do its always in my left leg. Strangely, I've had it a little bit more often over the course of the last few days, and I feel this is because I've recently stopped taking a drug I've been on for almost five years called Pregabalin (check out my latest #17 video, I'll include the playlist link below).
I'm sitting there, I can feel like my leg is going to "sneeze" and jerk out.. it builds up slowly and then suddenly BAM there it goes. The even worse problem is though, somebody has pressed the repeat button, and it starts all over again a few seconds later. Always at night, and always when I'm relaxing.
How does it happen with you?
th-cam.com/play/PLKh4CtwH9cEUJcntnXWXyo-OtqnMccwWU.html
Regards - Neil.
Thanks for your videos Neil, you really don't know how much we all appreciate your sharing what's going on with your MS. I too have had this strange sensation in first my left leg, which is my most affected side and now I have it in both of my legs. I have purchased magnesium on my own after reading that some people are taking it for this problem, but haven't taken it as don't know what dosage would be. Keep up the video journal Neil, it gives me the courage to keep trudging (at times) down this MS road we are on.
Hello Rona,
Thank you for your kind words.
I'm take Calcium(500mg) and Magnesium(250mg). Now it's interesting because I've not had the strange leg anomaly for quite sometime. I'm pretty sure it's down to the supplement, but I also started taking my prescribed medication again (Pregabalin) around the same time. So not sure.
I do intend to do some more videos but I'm currently doing battle with a chest infection from hell.. it's really knocked me off my feet.
Take care Rona,
Neil.
Hope you are feeling better at this time! I had that darn stuff and I fought it for about two weeks before I finally started feeling better. Thank you for the info on the Mag. and Cal., I will give it a go.
Hey Rona, lovely to hear from you 😊 I'm not feeling too bad this last week or so to be honest, I've been a lot worse. So it's nice to have a break with some good days for a change.
So pleased you've started to feel better, brolliant👍 I've found when I have too many bad days I start to wonder if any good days will be coming. Then the fear and anxiety kicks it. They do come though.
You're welcome with regard to the info about the supplements.
Take care and have a nice weekend.
Yes! I have experienced this
Yes I get those same sensation or what I call jolts in my arms and legs mostly. But they've also occurred in my neck.
They are seriously horrible aren’t they. It’s just gone 4am as I’m writing this message and I’m having to get up, because my leg won’t stop spasming. Drives me to destruction.
Thankful I found your channel. I hope your doing well. I'm only on video # 3.
Hey Cindy,
So please to have you on board! Thank you for your comment, you've got a fair few videos to go then if you intend on watching them all. I hope they are informative for you. I do have an MS Vlog Play list which might make things a bit easier, I've also numbered the sequence with a #.
Good to hear from you, and I hope that you are well.
Kind Regards - Neil.
I knew exactly what you were going to say happened after the premonition or sensation similar to just before a sneeze! This happens to me all the time, for the last year but thankfully it has all but disappeared over the last two weeks. Strangely it only moved into my leg just before it began to get better and was slightly different to my "normal". Usually, across my diaphragm, it begins with a sensation of bugs crawling under my skin and builds up until I have a "spasm" that can be mild like a bit of a jerk or so severe it bends mne in half and I make a grunting sound I spose as air is forced out of my mouth (Yes, I know it could be worse 🙄)! I can imagine it is like the nerves trying hard to meet up as they fire off but not quite connecting. I have almost every symptom known of MS but I also have disc bulge at L5/S1 and one area of stenosis in each other section of my spine ranging from mild to moderate to moderate to severe. Two of the weirdest symptoms I've had are getting out of a hot shower, one quarter of my tongue goes numb and sometimes if I smile, the top left side of my face will go into a spasm, similar to an eye twitch but much more widespread. I have had an MRI and CT but according to my Neurologist I do not have MS because there is no demyelination of either brain or spine. I actually think it depends on who reads the scan and how good they are as, like you say the lesions can be difficult to see. Anyway, I now have a referral for a second opinion and pray he is a little more clued up than the last one!!! Take care, thanks for the info, stay well x x x
Hi Dianne, thanks for sharing all of your symptoms. Yes the spasms are horrible and hard to deal with. For me, they only seem to happen when I’m lethargic, it’s one of the harder symptoms we have to deal with I think. Drives me insane!! Especially when I’m trying to sleep. I think I can explain the weird symptoms when coming out of the shower. It could be “Uhthoff’s Phenomenon” I’ve got some videos on it. It’s when your core body temp increases (the warm shower) and exacerbates symptoms. Google it for more info. I really hope your second opinion goes well and you’re able to glean some positive info from the Doc. Best of luck.
Hey Nicola, thank you for your comment and for watching my video.. its really appreciated (there's plenty more to watch, check out my playlist)
How are you Nicola? Only being diagnosed 4 weeks ago, all this must be pretty new to you and I would imagine quite scary at times. Although I suspect you've been having symptoms for quite a while and its taken a good few months for the hospitals to figure it all out.
I hope you are doing well, take care - Neil.
Thank you for the video, I have not been diagnosed yet with MS but I am researching symptoms and I'm experiencing very similar ones that you have experienced, I know that I have it but I am finding it increasingly difficult to deal with the doctor's, yes plural...my first episode was with leg weakness, feeling as if I'm going to fall while walking, scary! The first doctor gave me a multivitamin, the second doctor just said that there were no significant issues and that I can still walk...
Thank you so much for you're videos you've really helped me a lot!!!
Good morning Anne, and thank you very much for your message. I'm so terribly sorry you're having awful issues with multiple Dr's. I here this a lot to be honest, and it's a terrible thing. There are some good one's out there as well though, so please don't loose hope.
I can totally appreciate how scary the leg weakness is, BUT it's not necessary MS. Leg weakness can in fact be caused by a disc bulge in your back squashing a nerve which will in turn scramble the signals to muscles in your leg. It's very important to get these sort of things ruled out first.
There is no definitive test for MS, instead it is diagnosed with procedures such as MRI scans, blood tests and Lumber Puncture to name but a few. Also, history is VERY important so I recommend you keep a diary of not only current symptoms but try and remember as far back as you can when any symptoms started to happen and for how long they lasted (if they got better). Try and remember the timeline best you can, this is very key for the Dr's.
I was in fact diagnosed with MS in 2013, but this last 12+ months I've been going through a process of re-diagnosed. They now believe I have a condition called "Neuromyelitis Optica" (NMO) which is in the same "camp" as MS but just rarer and different, oh and very scary.
I always encourage people to do their own research, but Dr Google can quite often be quite scary. As I say, MS symptoms can in fact be caused by multiple different conditions, a lot of them not serious and very treatable. So this is why it's important to log the info and present to your Doc.
I wish you well Anne, and please pop back if you have any questions.
Best to you - Neil.
@@NeilBradleyMS Thank you so much for your timely reply you don't know how much it means to me. I have other symptoms as well such as tingling and numbness in my hands and feet and pain in my legs which is starting to dissipate thank God, and slurred speech, and shaking. This leads me to believe that I have MS. But I didn't know leg weakness could be from a disc bulge. Interesting. I'm trying not to diagnose myself but I really believe it is MS. I'm extremely scared that it is MS as I watched my friends mother suffer from it in a wheelchair. I'm so sorry. you have NMO that is scary, but good that you got properly diagnosed, which is apparently hard. I will keep a timeline for the doctors and thankyou so much for your advice and wisdom. Hopefully we can stay in touch.
Anne Norris Hi Anne, your other symptoms do sound neurological and in my experience you’re going to need a brain and full spine MRI scan to be able move forward with any kind of investigation. Don’t be alarmed by this, it’s the only way to look for lesions (scarring). Also, There are thousands of people with MS that are physically fit and don’t have to use a wheelchair or walking aids. So please try not to dwell on that too much as it will only worry you further. Yes of course we can stay in touch, It sometimes may take a day or two for me to get back to you but I always will. Take care now, and stay safe from this blessed Corona Virus.
@@NeilBradleyMSHey Neil, I had an MRI scan when I was 24 but and they found one lesion but they told me not to worry about it and it could be due to anything. Looking back, I should have known, but I wasn't experiencing any other symptoms so I try not to give myself too hard a time about it. I have a feeling, when I get another MRI that there will be more lesions. I am trying to be optimistic but it is hard, I did however see people who have been diagnosed for years and are still doing really well, so I just have to tell myself its not the end of the world even though it feels like it. I'm so happy we can stay in touch because I feel like I need someone to understand what I'm going through, and be there for each other. Yes don't go outside!! lol Cheers.
Hi Anne, I understand totally and yes it's will be very nice to stay in touch. I can recall the very first lesion they spotted with me and it was in my cervical spine (neck). Whilst it's no longer visible on MRI's there is still something there, damage that isn't being picked up because I can feel numbness in my fingers tips and hands. Also when I bend my neck forwards I get tingling in my shins!! Yes, this is called "lhermitte sign" so something in my neck is trigger tingling in my legs. It's horrible. It absolutely isn't the end of the world, BUT these symptoms are NOT easy to deal with are they.. and what makes it even more difficult is from the outside you probably (like me) look perfectly well to other people, and sometimes getting them to understand is very challenging indeed. Take care - Neil.
Hi. I’m going thru your videos.
I have for years had the looking down and getting shocked thing. It used to happen occasionally , now it’s almost every day. Yesterday was like a bolt of lightening. From nowhere.
And falling down stairs, With my feet upside down when I look down, my eye sight is so much worse, along with wiggle eyes Waiting on Dr to explain brain MRI in 2 weeks. My first cousin wasn’t diagnosed until late 40s.
So if you see me liking your videos, I’m trying to find answers or any help in this scary Journey. I appreciate you helping us all. Have a blessed day
Hello Cher, and thank you so much for taking the time to go through my videos.. I very much appreciate it.
The looking down thing is called "Lhermitte's Sign", you might want to Google it to learn a bit more about it. It's really not nice is it! At this very moment in time, if I look down both my arms tingle.. but this can change at random to other different places, usually areas on my legs.
I expect you're on tender hooks wondering what the results of your MRI Scans, I wish you well with this and pray that it's nothing sinister. You mentioned falling down the stairs, I wonder if this has anything to do with your symptoms.
Lovely to hear from you - Neil.
I also had last Sunday evening an episode of PBA. I went out for dinner with the family and I outbursted on uncontrollable laughter for no reason at all. This is like the six one a have since this last July. The 3 or 4 first ones was only crying episodes. This last two where laughters ones. Well, hope you keep one doing well and best wishes for this new year 2017. Take care.
Thank you Anthony, and best wishes to you also for 2017.
I've not heard of PBA that you talk about, but I understand what you're saying.. I wonder what could be causing these strange uncontrollable outbursts. I'm guess these are very out of character?
Regards - Neil.
I also get this, so embarrassing 😔
Dianne Barrett my neurologist prescribe a med that has totally controlled my PBA. It is called Nuedexta. A bit expensive, but she’s helping me with free samples. She gots so many since I am the only patient in the office with this condition so she give them to me. But I don’t know until when that could be. My medical plan is only covering a fraction of the price. I will have to pay 400 to 500 hundred dollars per month. And the ironic thing is that it is a mix of two inexpensive meds. Each pill costs .30 in ingredients. Hope you can get it and that your plan covers it. Best wishes. 🙏🏻🤗
@@msfaithwarrior thanks for that. I'll try not to get on my soapbox about PBS system because it will only start me on a rave about Aged Care, MH and health in general and the bloody wasted $$$ here in Australia but I'll certainly check that out! 😪😪😪 can u tell I'm a bitter old RN who if hadn't had to retire due to health, I would have anyway due to stress and frustration??? 💝
Hello, I hope you get better. I watched you other video and I was wondering if you got a brain MRI as well and if it showed white matter hyperintensities. This is what I had. I have also had a similar feeling in my leg kind of like a cramp near the upper ball of foot. Is that what you had?
Yes I have the same thing. My leg takes a life of it own at times. Can understand your frustration. But mine than continues until I have a full on dystonic attack in my legs
Hey Toni, thanks for the comment.. Hmmm, that doesn't sound nice at all for you, I hope that it passes quickly and doesn't cause you too much distress. Yes, I can definitely relate to legs having a life of their own.. this particular symptom doesn't surface very often but when it does, its quite disturbing.
Sounds like spasticity, but I'm not a medical doctor ... just another dude with MS. I agree with what you say about the symptoms being disturbing -- and it's crazy that we all have slightly different things going on.
Hey there.. Thanks for the comment. I tend to get the spasticity when I've been sat for a while and then get up to walk around. Dam legs seem to have a mind of their own, but this is weird and quite different as it happens when I'm completely still. Also, it's totally random and I can go several days without it happening.
I always had problems with my feet and legs while sleeping, it kept me awake, then I'd sleep for a couple of hours. Never had any spasms but it was unexplainable.
I have that when I go to sleep sometimes. My entire body jumps up into the air. It freaks people out. I've had that electric feeling running through my body on and off my whole life & muscle spasms in my legs for many years. I'm in the process of being diagnosed with ms and other muscle/tissue disorders. I told my boss, I turned 49 and now my body is dying... that was 7 months ago. I recently had a doctor refer me to a psychiatrist... She needs a psychiatrist! I hate these uninformed doctors! Makes me so angry. Anyway, I'm looking forward to seeing your other videos. They really help!
I super pleased to hear that my videos are helping you you.
I’m currently 47 and I used to say (still do) something very similar to you, I’d say “I turned 40 and everything broke!!”. I can relate to your saying very well.
There’s so many comments from people on my channel saying similar things to yourself about Dr’s. It’s almost as if some just have got no clue, I find myself knowing more than them sometimes.
I always say, if you’re able do your own research and go equipped and armed with plenty of info on your next visit. Keep a diary of symptoms as well, try and remember as far back as you can. It should help.
Yep! Sometimes I almost bounce of the bed! Do you get a feeling of crawling under yr skin where the jerks start? For me it's around my lower ribs. Went thru a stage of a spot in lower left rib being very sore them a period of it itching like crazy! First neuro said "hyping jerks" I never believed him because they happen as u are falling asleep and althoygh usually during the night I have had it in the day if really fatigued, another huge problem for me especially in Summer! Mind you, same guy told me I had Myasthenia Gravis, then next busy, Myasthenia Gravis Optica then when I asked him to fill out insurance papers because I could no longer work he took it all back! So frustrating!
Yes I do get the crawling sensation when the spasm is starting to “build up”. It’s horrible. Also like you, tiredness and lethargy seems to trigger it.
Chronic Lyme is a brain and nervous system infection that gives you all these strange and disconcerting symptoms. I had a bit of restless leg for thirty years, it is much worse now with Lyme disease. Most doctors are missing or dismissing Lyme.
Hi Kathleen,
And thank you for your comment. This has got me thinking a little bit, I expect its absolutely possible for some people diagnosed with MS to have been mis-diagnosed and in actual fact they have got Lyme disease. However, having said this the opposite could also be true, those who think they've got Lyme disease, could it be MS? Might be very interesting to do some more research. I think though with Lyme disease, one of the first very classic symptoms would have been the circular rash from the bite of a tick.
Good to hear from you.
Regards,
Neil.
Thanks for your comment. If I’m correct Lyme disease is caused by the bite of a tick. For me personally, I’m pretty sure never been bitten.
I have exactly that.
I think I may well do Neil. Another thing I get is spasms when I stretch my arms or legs in the morning. My legs more so, they spasm like a rabid dog. I also get these occasional pin pricks, vey sharp and they make me jump. Not often but I have noticed them of late.
Hi Trev, for me no pin pricks but I totally no about the legs spasm.. when I awake in the morning and turn over nearly every time my right leg starts going mental. I can't stop it, sometimes I think it's going to shake itself out of my hip socket it's THAT violent.
Ello ! Came across your video incidentally, and thought I'd leave a note with regards to the question you'd posed on the bizarre twitching experience. Given that I've experienced the very same symptom & many others Ive been in contact with & suffering from the same ailment, the only conclusion to be drawn is that "yes" it's a classical symptom for MS. Look at it as a seizure-in-miniature. Bloody frightening sensation, but these are only bad signals from the brain when our nerves are being attacked. Weird syndrome that is........ :-)
Hello Laura, thank you for your comment it's really appreciated. Yes it is indeed a bizarre symptom and although it's not too bad at the moment, there has been times at night I've been kept awake because of it. I never had anything like it before prior to the MS so as you say its got to be related. There's a few more videos you might find of interest in my Ms Vlog playlist if you get time. I hope you have a good day, all the best.
Most welcome, not a problem. And yes, surely the MS is related to the "twitches". As I said in previous mssg, the sheath of the nerve cells is being attacked, hence electrical impulses from the brain is causing the "kicking out leg" effect. Also, symptomatic medication is available with prescription of course...check out Fampyra. I got it but never actually took it.....the side effects label made me a bit reluctant. However it does improve walking (it's a potassium channels blocker). I did get to watching 3 of your videos so far :)
+Laura Norton Thanks for the info, yes a lot of these drugs have nasty side effects. I try and cope best I can without them.
+Neil Bradley Hello, Neil. Thank you for your 'Vlogs' that I'm finding helpful. I'm in England too. I have that twitching a lot. I wish I had a warning though, as I've chucked hot tea, cold drinks, sandwiches and my iPhone on the floor, over myself and at one of my two little dogs! My legs, feet, shoulders, hips and head do it too???!
I haven't been diagnosed as having MS or anything apart from cervical spinal stenosis. I have osteophytes in much of my spine. Various doctors have dealt with one thing at a time instead of taking notice of my multitude of symptoms. The most worrying being my speech, very, very short term memory loss, etc. I'm a writer but I can't do it as I can't remember how to spell anymore (thanks spellcheck 😊) It's like learning a foreign language at times. My hands not hitting the right keys on my phone. I'm going for results of a whole spine MRI next week. If there isn't a reason to cover all my symptoms I will ask about MS. I'll let you know. Much love ❤️ TY
Hello Pinkfox :) Thank you for comment and also for watching my video, I'm really pleased that you've found it helpful in some way. A lot of the comments from other people have informed me it could be Restless Leg Syndome which I suspect is related to my MS in some way. But after reading your reply, your twitching is entire body related by the sound of it. I feel for you, its definitely not nice is it.. fortunately for me I don't get it very often and when I do its usually at night. I also get a warning, like a build up of sensation before my leg fires off in some direction.
With regard to your Speech, memory loss and unable to remember how to spell, that must be so horrible for you.. I hope you're coping with this ok. I'm no Doctor, but its very obvious to me that you've got something Neurological going on.
Yes please, I would love to know how you get on when you receive your results. Sending you some good luck. :)
Best Regards - Neil.
Oh yes. I’m familiar. I took care of my best friend. He had those, many times. And I expressions the tremors. I think a train is going by , cause it feels like the house is shaking but it’s my legs. Very familiar with the leg for no reason jerking. Arms too usually after the lightening bolt feeling. And somehow my Pitbull alerts me to sit down b4 a bad episode.
I'm still on the waiting list to see a Neurologist, but my symptoms started in my fingers as numbness and tingling, gradually moving up my arms to my back and now my legs are starting to act up....numbness, tingling, muscle spasms, balance problems, lightheadedness, pain all over are some of the symptoms I experience every day :(
Hello Brent, it’s good your hanging in there and waiting to see your Neuro. In the meantime if you can write down a history of when you can remember when symptoms start, current symptoms and any new ones, as much info as possible basically. This will be massively helpful to the Dr and help a lot because symptom
history plays a big part in this kind if investigation. Best to you.
Oh yeh sir ,I know what you mean and glad to hear it's not just me! But can I ask you if you would lose control spin around on the floor or your bed like a fish out of water? Thanks, Lena
Hi Lena,
Thank you for stopping by to watch my video, and commenting.. I really appreciate it.
I have to say I've never experienced the phenomenon to the extremes that you have described, such as spinning around etc. However, it can come on very quickly.. for example last night I was sitting watching the TV and within a couple of second my legs just suddenly kicked out without warning! It really startled me.. the weird thing is it never happens to me in the day time, only at night when I'm relaxing or in bed.. I can't explain why that is.
Regards - Neil.
NEAL BRADLEY. Yes I felt those Feeling in my. Legs electric yolts..... currency it would move me as I sad or stand. Didn't understand why.
Hi Lucy, it’s one of the most annoying symptoms isn’t it. I’ve had this a lot just recently, then I can go several weeks without it happening at all.
Hi Neil. It happened to me too like a month ago. I was very tired and went to bed around 11pm and I couldn't sleep like until 2:30 am. My right leg was jumping like crazy.
Hi Anthony.
Yes indeed! Isn't it a strange sensation, for me there is like a build up first and then my leg kicks out.. I always know when its going to happen. The only problem then, its repeats like in a cycle and it gets very irritating and annoying.
Regards - Neil.
Yes. You describe it very well. That's it.
I get exactly the same thing It can happen a couple of times a night then go a few days with nothing I get a similar thing sitting watch TV or something just chilling out then get a crazy intense itchy sharp pain sensation and my let will twitch out.
Hey Terry, thanks for the comment! Yes it's very strange, I haven't had the sensation for a week or two now but then it can just occur out of the blue and usually at night. Regards.
I’ve had that symptom (restless leg syndrome) for years before I was diagnosed. It can make it hard to sleep. I also take magnesium which helps.
Hi Cheryl, it drives me insane. EVERY night without fail about 8pm, my left leg will start twitching and often violently jerking. It drives me crazy. You’ve given me an idea though, I’m going to start taking magnesium again, and see if it makes a difference. Pretty sure we’ve still got some. Nice one 👍
I was diagnosed with Restless Leg Syndrome around the same time as Fibromyalgia 25 years ago and I'm 50 yrs old. I have a lot of MS symptoms for the past 2 years and am in the "probable" category and have been referred to an MS clinic. I've also had my arm, finger, bottom jaw, head, thigh, foot and or a toe do the same "jerking" movement any time I'm not using the muscle a lot over the past 2 yrs. The jaw moving on its own was a very weird sensation.
Hi Vicki, thanks for the comment. There are a lot of subtle similarities between Fibromyalgia and MS, both of which are very difficult to diagnose. I was in the probable MS category for over a year. If you're getting the 'jerky' feeling in all of those different places, I would say that there definitely something untoward going on, are you getting yourself checked out? I'm fortunate that the strange Jerky sensation isn't around too often thank goodness.
+Neil Bradley Hi Neil. I've had numbness, tingling, pain and weakness in my rt. arm for one year plus and now the left arm has had similar symptoms (the symptom list I present to Dr's. is 6 typed pages in length) which connected to your symptoms in your legs. I also have a bulging disc at C5-C6 which herniates at least twice a year for the past 20 years.
I have no idea when I will be seen in the MS clinic or by a neuromuscular doctor as I live in Ontario, Canada. Long wait times for everything. My sister has MS and I believe more family members are undiagnosed. I am only on Video 5 in your series!! I may have more questions.
+Vicki Porter Hey Vicki, it's interesting about your disc bulge in your cervical spine.. It's possible this could definitely be causing some of your symptoms especially if it's pushing on some nerves in your neck. On the other hand, it's important to rule out any possible lesions, this can only be done with an MRI scan. I can appreciate the wait must be frustrating. All my problems started with a lesion in my neck, originally thought to be Transverse Myelitis. I never lost power in my arms, but I had a lot of painful symptoms in my hands, especially burning (nerve pain). My latest video posted only today is about this very subject. I hope you get some answers soon. So pleased your enjoying my videos, and feel free to fire away with any questions, although it might be the morning now when I answer (just nodded off on the settee lol). Time for bed I think.. Best regards.
Throughout my research I have seen that TM can be a precursor to MS. At this point, I'm beyond exhausted simply waiting for a diagnosis and treatment to start let alone find the right one. I do understand that some of the meds used for MS could be detrimental to other diseases with similar symptoms so getting the diagnosis right is key. The waiting is hard.
I think with more visible as opposed to mostly invisible symptoms I've had now and especially with Bell's Palsy causing facial paralysis for 6 days recently, this latest neurologist is on the right track in my next steps.
Always hopeful this will be sorted out soon and I can start to fight the unknown I've been experiencing for too long. Sadly, there are many people who wait years for diagnosis and treatment with many illnesses.
Settee - must be a boater like me. Well like I used to be. Now my legs are too unpredictable to dock the boat. I never know when they are going to give out or I'll lose my balance. Maybe I can handle a pontoon someday...
Take care,
Vicki
Hi Vicki, totally agree with you point about TM.. that's what they thought it was with me for quite sometime until I had another relapse in 2012 which left me considerably disabled. Until of course, they spotted additional lesions appearing in the Thoracic area of my spine on the MRI.
The facial paralysis can't be nice at all for you, I hope this starts to calm down for you very soon. Great your neurologist seems to be on the right track, fingers crossed you will have a diagnosis some time soon.
There are lots of comments on my channel where people are in the same boat and have to wait years, and are still actually waiting. It's a terrible thing, but even worse there are individuals who don't have medical insurance and can't afford the astronomical costs of medical care, especially in the US. So, they just have to continue day to day suffering.
Regards,
Neil.
hi have you ever had seizer and what are your main sythoms I'm been have seizer and I now going to epilsy centre but have the burning balance problems and headach and cant feel my right hand I also have weakness and get chest pain.
Hello Gemma,
Thanks for stopping by, its lovely to hear from you.
I'm sorry to hear that you have been having seizures, but also the bunch of other symptoms as well. I hope that you're coping ok with everything.
I'm fortunate never to have ever had a seizure, but I can relate to burning pain, numbness, balance issues and especially weakness.. the chest pain also albeit that one is a bit of a mystery.
I expect the seizure is more than likely related to Epilepsy, and I'm not sure if this can cause the other symptoms you've been experiencing, are you getting yourself thoroughly checked out?
If you have the time, you may be interested to watch some of my other MS video where I talk about various MS related topics. I've included the playlist link below if you wish to look.
th-cam.com/play/PLKh4CtwH9cEUJcntnXWXyo-OtqnMccwWU.html
Regards - Neil.
Sounds like restless leg syndrome, I have experienced it myself on occasion. Sometimes it can be quite violent, usually when you are resting or trying to sleep. I'm no doctor, just saying!
Hello Clara, yes that's right. It only ever seems to come on when I'm resting and feeling lethargic. It's almost like torture because my leg can twitch/jump violently 3 - 4 a minute stopping me from sleeping. Drives me insane.
No diagnosis and I get this in my neck, feet and to a lesser degree in my left hand
Hi there, I'm sorry to hear that you're having to deal with these symptoms. Have you considered the possibility it could be something called "lhermitte's sign" .. if you look up the symptoms on Google you can learn more about it. I get this, when I tilt my neck forwards (chin on chest) my arms & hands tingle, and other random areas on my feet and legs do also. Just a thought. Take care.
Thank you I will look at that.
im spainsh when your knees hurts (aceite cubre) is a oiment for pain
Mines done that too
Hello Kathleen, it’s a very annoying thing. Since making this video about two years ago, I still get this but not all of the time thankfully.
I have cerebral palsy. I don't get the build-up or warning, but I the twitch from hell from my right leg. Hasn't happed for a bit, but it's very annoying when you're trying to get to sleep, and it gets you.
Hi Dean, I’m very sorry to hear you have CP. I recall you from Jon’s channel (Ability street).
The twitching is one of the worst symptoms ever, isn’t it!! Drives me insane. This video in fact (I think) is when it had just started happening about three years ago. Since then it has got a lot worse. I’ve done more videos on this that I’m sure you’ll discover as you go through them. I’ve found Diazepam (Valium) helps with the muscle spasms. Although, this is a controlled drug and extreme care has to be taken as to not become addicted to it.
When I’m trying to sleep, my leg can spasm and it wakes me with such a force, feels like it launches me out of bed.
Take care my friend.
@@NeilBradleyMS Yes, that's right, Neil. I also subscribe to Ability Street. Eventhough your first videos are three years old now, their relevance won't date my friend, to people who are newly diagnosed with MS.
If you don't mind, i'd like to recommend that anyone either newly diognosed or has MS, subscribes to your TH-cam Channel. The professionals and organisations do a brilliant job, but hearing someone who has MS or any other disability or illness, pays dividends, as far as I'm concerned.
Get swelling in ankles from time to time. Worst pain ever. Get blurry vision also but can go for weeks and get nothing. Lasts about 15 minutes then back to normal. Just feels like your field of view is restricted. Can't sleep properly keep waking up. Never been tested for MS and don't know whether gout is source of ankle problem but vision issues started a few years ago. Years ago used to get pins and needles in my arm and hands but nothing for ages so i don't know what is going on.
Hi there, one of the very first symptoms of MS can be something called Optic Neuritis which is blurring of the vision. Having said that though, so many different things can effect the vision so it wouldn't be sensible to jump to an MS conclusion with this one symptom alone.
The swelling of the ankles sounds just horrible, but I know for a fact it can be caused by a number of different ailments. I'm certainly not qualified to diagnose you, I would however recommend you go and see your Dr ASAP as the swelling could be a sign of something more serious. Your symptoms need investigating.
Not wanting to sound to bossy, but if next time you get the blurry vision you make an appointment to see an Optician they may just well be able to shed some light on the problem and possibly put your mind at rest a little bit.
Good luck, and I wish you well - Neil.
@@NeilBradleyMS Thanks for reply. I got diagnosed with hypertrophic cardiopmyopathy about 7 years ago so i'm a member of the 1 in 500 club! And high blood pressure,asthma, so medication could be side effect of swelling of ankles.
I have this in my right leg also. That strange build up and then it jumps. I take magnesium which appears to help.
Hello Coral.
Yes! It's most disconcerting isn't it, and very annoying.. I'm also taking Magnesium for it and now you come to mention it I'm the same!! It's not happened for quite some time and I hadn't realised. Thanks Coral :)
Take care - Neil.
:-)
Hey Neil..
did you even have any bladder issues because of MS ? and if yes, what are they ?
Hi Bahaa, yes unfortunately because I'm very "spinal" the whole of the lower half of my body is effected, including my bladder. My Bladder is very overactive and I get a lot of "false" signals. Urgency as well, meaning when I do get a signal to go I have to act on it immediately otherwise I can seriously regret it if you know what I mean.
@@NeilBradleyMS So you're saying, that if the MS is affecting the bladder, the lesions should appear in the spine not the brain right ?
Yes that i am sure of.
@@NeilBradleyMS thank you Neil for all your answers .......
I wish you all the best in life , and i hope scientists could find a cure for this evil disease
Stay safe , 💌
Thank you Bahaa, it’s been nice chatting with you over the last few days. I’m glad I’ve been of some help. Good luck in your quest to find answers, be well my friend.
Hi..Do you ever get wet/ cold feeling in your legs or other body parts? it feels just like water running down your legs..I have been getting this feeling for over a year, my dr never heard of it..Also I had a double fusion in my neck so I know how that surgery feels ugh
Hey there,
I'm surprised your Doctor has never heard of that sensation before because I know it very well. It's sometimes very difficult to describe or put into context the weird sensations I experience especially in my legs. I have tightness in my legs all of the time, especially above the knees in my thighs .. I describe it as my legs feeling like they're set in plaster casts. My feet are often so numb I don't know if I've got footwear on or not!. I've had the wet/cold sensation on the lower part of my legs especially the left (shin) so I am familiar with it.
The double fusion on your neck definitely does not sound like fun at all, I'm guessing you were having disc issues possibly?
Regards - Neil.
I did have 2 herniated disc but that was 12 years ago so all is well there now..Does it feel like water is running down your legs??
Anyway now in 2016 what happened was, I stood up and noticed my leg was wet and reached down to wipe it off and it wasn't wet at all and I had never felt that before not ever and it scared me..(to move forward in my story) I now feel this feeling in both legs and in both arms and on my sides..it now comes more often so Im trying to find out why Im getting this phantom sensation..
My symptoms are not atypical of MS but Im thinking everyone is so different, so maybe so? Im so fatigue I now plan my day around sleep, which is embarrassing..Im getting the wet/cold feeling all over..I am having problems with my vision but again it doesn't sound like the same thing Im reading about MS..My problem is kinda off. when waking up I see black spots all over the walls for about 30 seconds or so, after blinking a few times they disappear, I've had this symptom for about 3 years..(no floaters)..I also get muscle spasms, especially when I lay down I get them bad on my sides for some reason, but I blame that on that I gained weight over the year lol..I do get numbness but I blame this on sitting to long or when its in my hands, I think I need a rest from the computer..its not a huge problem yet..
And yes I agree with you, I was surprised the Dr didn't know about it but you know how the Drs are they dismiss you..Thank you very much for your videos and your response Neil..Linda
Your experience is fascinating, thank you for sharing it.. I'm sorry that this sensation has made itself known in several other parts of your body. This must be hard to deal with, I hope your managing this ok. You're absolutely so right, MS effects every single person in different ways, for sure.
I haven't experienced it for a long time, but I do definitely recall a time before all my disability I was out walking with a friend and I had to stop because of the oh so weird sensation on my shins. I just thought I'd been over doing it you know, but it definitely felt like a water sensation (I've also had it since). It's all nerve related and how hot and cold temp messages are sent back to the brain, because there is damage on the nerves (at the time I didn't know it was MS) the messages are scrambled and our brains can't interpret them properly.
Not sure what the black spots in your vision might be, this is something I've not really heard of. However I am very familiar with floaters, for some reason I've always had these since a very young age (teens) now I have hundreds of them. I don't really notice them unless I look for them.
The thing is I'm not a Doctor, and there are a lot of different conditions that have similar symptoms to MS and this is why its always so important to get checked out by a medical professional ASAP. However, as a person with MS I can tell you that you've just described a bunch of "classic" MS symptoms namely watery feeling (phantom sensation), fatigue (big yes), muscle spasm (big time) and numbness (with a doubt).
Linda, I truly hope it's not MS as nobody wants that diagnosis.. from what you describe you absolutely without any doubt have something nerve related going on. Here's is an idea, and I suggest you start right away. Start a diary of symptoms and events.. it doesn't have to be complicated and it has to be brief enough for a Dr to scan through. Each time what you consider to be a significant symptoms or event happens to you, note it down and clearly date and time it. You need to build up a case for yourself because in my opinion you need to get that a Doctor to refer you to a hospital to start an investigation.
I hope I've been helpful Linda in someway, and I wish you plenty of good luck. I'd love to hear how you get on if possible at some point.. sorry about the long message.
Regards - Neil.
Awe thats a great idea! I will start a diary tomorrow and will make an appt with a specialist, I will let you know when I find out what this is..And thank you very much for your help and I wish for you to lead a normal healthy life..
Thank you and good luck.
it's called restless leg. comes in various degrees of restlessness.
+Barbara Rejniak Thanks for that Barbara, I'll look that one up.
Yes I got ms I suffer with what the legs its called restlessleg you can get tablets for it
Hi Jane, I’m terribly sorry to hear you have MS .. it can cause the restless legs can’t it. I take a muscle relaxant called Clonazepam which seems to work fairly well. I hope you’re doing ok.
Mine do the same thing, they call it clonosis and I have to take Baclofen to control it
Thanks Ryan, I’ve got Baclofen but don’t currently take it. Good to know just in case as currently having a really bad time with the twitching jerking leg.
I wish you the best my friend and please don’t hesitate to ask anything, it’s nice to communicate with people who know what it feels like
Thanks Ryan, same. It’s only my left leg and only at night as well, perhaps the evening meal digestion has something to do with it. It’s been every night so far this last couple of weeks. It also wakes me at night, my leg will just kick out violently and wake me up, then repeat every 30 seconds or so. I find if I get up and walk about, it stops sometimes.
A possible solution may be a weighted blanket? I use one more for anxiety but I believe it helps withe spasms too
Thanks Ryan, I’d got no idea what weighted blanket was so Googled. They look pretty good, thanks for the info.. very much appreciated. 👍
Sounds like restless legs...
Yes Frank, it's a very similar symptom.
Neil Bradley MS But not the same? Restless legs are bad enough...
Well the start with I thought so, but as one of my subscribers put it recently I think there is a subtle difference. Restless leg (I think) is more of a compulsion to move the leg because of the horrible sensations etc. Where as what I’m experiencing is muscle spasms which are completely involuntary and cannot stop them from happening if I tried. Hope that kind of makes sense.
I've had something similar. However, it's my right leg. Would just kick. I ignored it for years like an idiot. Always happens when I go to bed, lay down, relax, and usually happen. Even wakes me up in the night.
Hi Daz, yes I understand.. you should get it checked out. I still get this to this day, with me it's my left leg and last night was just horrendous. It was kicking out so violently about every 15 seconds, sleep was impossible.
@Neil Bradley MS I'm going through it atm. They know its MS now. Was misdiagnosed for years.
@@daz1598 I'm really sorry to hear that.. You're not alone, I'm in the process of being re-diagnosed again.