Hello Cindy, Oh Yes!! I remember having a bath and not being able to get out of it, had to shout the wife! Fortunately its short lived though until your core temperature cools down, then the mobility returns. As I no doubt explained in my video, when I became ill once with a sickness bug, the virus played havoc and I had a high temp.. something as simple as paracetamol brings down the temp (only when you're ill) which worked wonders. Uhthoff's Phenomenon played a key role in my diagnosis of MS. Thank you for you comment Cindy, and lovely to hear from you. Regards - Neil.
Thank you Neil so much for sharing and claryfying som much about your type of MS Your story is very important for my studies! I appriciated all your videos" Karin in Sweden
Hello Karin, I'm so pleased I'm able to help with your studies in some way. If I can be of any further assistance please feel free to contact me. Remember to check out the MS Vlog Playlist if you haven't already done so where you'll find a few more videos. Best regards - Neil.
I just stumbled upon your videos, and they're great to see. I also have the problem with heat, and just posted a video about my new cooling vests. They seem to work pretty well. Hang in there!
Neil, I am so grateful for you speaking out about this. It gives me a direction to head towards. These past 2 weeks have been excruciating for me and my family. I got a "bacterial infection". My first symptom was stomach pain, then it moved towards my groin area. After 1 night I began having pain in my hands and legs. A burning sensation/painful tingle if that makes any sense. Went to the PCP, just to be told I was fine and I was prescribed anti biotics bc they couldn't find any thing wrong, so the doctor would treat it as a prostate infection. I took the Bactrim for 2 days and my symptoms got way worse. (maybe from my temp rising). My muscles began to lock up, my back hurt uncontrollably, I could not sit still. So I went to Urgent care clinic. More antibiotics, some pain meds. I began taking doxy and metronidazole. I couldn't sleep more than 30 mins to an hr. If I was lucky. Oddly enough, a hot bath seemed to "help" at the time, or so I thought. I went to ER. Blood work looks great the doctor said. No problems. I was literally in tears. I had no clue how that was even possible. Im 27 and have never felt this pain before in my life. The burning wouldn't stop. My muscles began to freeze uo and spasm. I went back to Urgent care. Baclofen was prescribed. It let my muscles relax but pain still there. I'm desperate at this point. The infection finally starts to die off 2-3 days ago, but my pain still remains in my arms and legs. The bottom of my feet are SO tender. I can barely walk. Its like Im a newborn. Now I see the baths are making it worse. When I go to get out of tub, my feet are very sore and its hard to get up. I fell once even and hurt my ribcage. The pain is the worst in my hands and feet, but still prevalent in my calves and forearms. Also, I have been getting injections of antibiotics in my hip, also numb there. I cant even feel the shot. My left toe is numb as well. Its crazy how much sense this is all making now. I started to get a chest infection as well. When I cough or get in sunlight, I can feel the pain radiate across my skin on chest. Thats clearing up too now but still the feet and hands. Whats not consistent with your story is that my body temp has been running slightly below normal. 95-96 deg F. If I can convince my doc to refer me to a neurologist for an mri I think that will be the next step. I keep hoping that the pain will go away on its own. Its so hard to get a doctor to listen here in the States. Thank you brother for posting this info and reading my story. I'm like you, I just cant understand or accept that I lost the ability to walk overnight. I have kids to feed! Now that the infection is gone from my body, I will be able to work through the pain in arms and legs. But now I have a direction to search for answers. Thank you so much Neil.
Hi Walter, My heart goes out to you my friend, sounds like you've been going through a right old tough time especially the last couple of weeks. I can totally relate to the symptoms you describe, the burning sensation is nerve pain. I'm very familiar with this, I get it a lot in both my thighs. VERY debilitating isn't it. Also the back, very stiff muscles in the lower back causing considerable weakness for me. And yes all of these horrible symptoms can easily stop you from sleeping, as they have me in the past. This just adds to the problems because then of course you're so tired it's difficult to function. The underlying infection will be exacerbating the other nerve symptoms for sure. Best thing to get your temp down is good old Paracetamol, I didn't realise this until I was admitted to hospital a while back. Baths increase your core body temperature very slightly which hinder my MS Symptoms. Sounds like this is having an effect on you, even though (I'm assuming) you've not been diagnosed. Hmm just read your temp has been slightly lower, I suspect that would be something to do with your infection. Be interesting to see how you are when this has completely cleared up. Reading through your message reminds me so much of my very early symptoms. A lot of pain mostly in my hands and feet when it all started ten years ago (burning and redness). Hands still give me a bit of grief, feet are just terrible, legs.. well I've about given up with them!. I think I talk a lot about this is my first video. I would suggest you start to get all these symptoms checked out asap if you can. I know that. I know it's easier said than done in the states, but an infection should definitely not render you unable to walk overnight. Something else is going on, not wanting to scare you Walter but if it is MS you could be in a relapse. It is treatable, and there are drugs which help reduce the relapse rate. It's important to try and remain calm, and clear headed. Keep a diary of your symptoms, dates, times etc. This is IMPERATIVE to help with a diagnosis. Try and recall any previous episodes that you had, that just got better and went away. This could be the start of something. Look after yourself, and I'm very grateful to you writing to me and sharing your story on my channel. I wish you the very best, and please feel free to write back anytime, I'd be interested to know how you get on. Good luck, Neil.
One last thing Walter, in case you didn't realise since around March 2016 I've made over 30 videos about various different MS topics, some vlogs as well. You can find these in my playlist "My life with Multiple Sclerosis". If you have time, feel free to check them out, they may just help. Neil.
I am working on it. Thank you so much for the response. I have been researching all day and it is a scary thought. I am also going to look into diabetes, because this seems to mirror some of the same exact symptoms as well. I suspect the ER would of tested for that. Which is why I continually bypass it online. But the symptoms seem more and more curiously alike to me. A type 1 diabetic at age 27 seems strange, indeed. But there is a case of a 90 yr old being diagnosed with it. This could explain my abdominal pain and throat infection(thrush from the yeast). Yeast is more active in a diabetic bc of the sugars being readily available to allow the yeast to thrive. Also, I am in the antibiotics right? That kills the good bacteria in my body as well as the bad. Type 1 is an auto immune disease as well, which is why it could mirror the Ms symptoms? Im hopeful. But my hands are red too and blood circulation seems non existent there. Alot of times, type 1 patients run a low temp too. Idk its all so confusing. Part of me thinks I need to go back to the er, the other part says wait for gp in morn. I also have a very strange taste in my mouth which could account for ketones and weight loss(13ilbs in 10 days). I got a glucose machine so I coukd test. Nobody has pricked my finger since all this started, but my blood sugar is pretty low(72). It just seems like they ER would of checked that while I was in there.
Neil I think I found it. My problem. It can also be masked as autoimmune disorder. Candida overgrowth. Its effecting my throat to my tummy. The antibacterial I was on has made it worse. Wow wholly molly. Im going to do this treatment and pray it works. If you have any sore throat or yeast issues, it would be worth looking into. It seems like its going to take awhile to treat but Ill try anything to get rid of this pain!
Hey Walter, sounds like you've been very busy glued to Google😉 I've not heard of Candida Overgrowth but I'm going to look it up shortly. Great work, and let's hope the treatment is successful. I read your previous comment, thanks. Good luck.
Hello Mr Neil, thank you for sharing your experience with this phenomena.I am a physician and I am always interested in looking at the disease from patient's prospective . This is really wry useful and it gave me better idea and understanding of different conditions. Thank again and wish you all the best .
+Abeer Mohammed Hello Abeer, thank you for commenting. I'm glad you found the video interesting and useful. I recently did a further video about Uhthoff's only the other week, you may like to check it out. I've also done several videos about MS on my channel and how it effects me should you be interested. Cheers! Neil.
I agree with this discussion. But I really regret not being able to have a bubble bath or enjoy my (rather costly) whirlpool hot tub. My dog actually enjoys the tub, while I sit nearby and watch. Since he's a service dog, I let him have his fun. Silly but we take what we can get. Thanks for your videos, very helpful. (Florida veteran, USA)
Hey there, thanks for the message. It’s really sad isn’t it that we have to sacrifice the things we’ve enjoyed for so long because of our failing health. Know that your not alone💞 It’s nice that your Dog 🐕 is enjoying the hot tub nevertheless, and yes we do indeed take what we can get. Take care.
morning neil very interesting video I have had this happen to me 20 years ago before I was first diagnosed with ms I have never had a bath since and have showers only thanks again
God bless you Neil I love you in Jesus. As usual I can hear it in your voice but then I can only wish I could know what others see or hear in my life just maybe I could work on changing what they hear and see two have stopped calling me or answering the phone and hang up while I am talking. I'll just leave them alone. Oh the cool weather is here now the heat won't , , , , but then I feel hot when it is not even hot in here. But life goes on. At least I can type for now.
Hi Rick, I'm sorry to hear you're having a tough time at the moment. It's a terrible thing that two people have abandoned you, quite often all we need is people to listen to us. It's difficult for others to understand when they aren't experiencing illness themselves, but it's no excuse to desert you. I'm glad you are still able to interact with an on-line community where there are lots of people that understand your condition and whom are going through the same, or a very similar thing. Take care my friend.
Hi Neil, I get the leg twitches so hard that one thew me up in the air so hard as I put my worse foot on the floor that I came down on my head, I also get vey hot feet and at times in hot weather can not walk at all the pain is unbelievable.
Hi June, thanks for the comment.. That's just crazy, I hope you didn't hurt yourself too much. Fortunately for me the twitching doesn't happen too often and when it does it's usually at night but it stops me from dropping of to sleep which is annoying. I find your comment about hot feet extremely interesting because it was my feet where all my problems started, numbness, altered sensation and PAINFIL, RED and HOT feet!! Even now sometimes (not at the moment) when I'm just sitting in the normal position with my feet on the floor, my feet can HURT SO BAD and I can't stand it.. I have to lay down and take any weight off them completely. I've also just remembered, back in 2007 when all my symptoms first started, I'd have the same with my hands, painful, red and burning! I used to have to keep running them under cold water, my fingers would feel like they'd been pumped up. I still get this a bit, usually when I'm hot or in the warmer weather but its not as bad thank goodness. I totally appreciate where your coming from. Thanks for the subscription June, don't forget to check out the rest of my videos in my MS Vlog Playlist, I hope you find them interesting. Best Regards - Neil.
Again, I thought the body temp thing was because I was nuts. And I would bet anything, that's why I get more clumsy and everything flairs, walking like a drunk, etc happens when I get up and walk around, or go outside to the garden. I wonder if sitting in the strong hot sunlight does something similar to symptoms.
Isn't it funny how the penny drops and everything seems to fit into place! Anything that makes your core body temp increase would more than likely effect your symptoms. Even having a soak in a warm bath tends to have an effect, worst of all for me though is when I'm ill with a virus. I tend to be alright in the sun (mostly), but then other times it effects me, quite random really.
In the 19th and early 20th centuries, the effects of heat on people with MS were used in the diagnosis of the condition. They would put the patiet in a hot bath and see what the effect was lol. So you would get clean and end up with a life changing diagnosis. One of my symptoms was the hot bath. I noticed slowly i couldnt have a hot bath i used to enjoy it but slowly i couldnt. It got so bad one day, i couldnt get out of the bath at all. i lay there called my hubby, and poor guy who suffered with COPD had to try and get me out. we found the best thing was to take the plug out. I slowly cooled down but still needed his help. I landed on the bed like a wet fish, barely able to move. anyway it was Uhtoffs i know that now. baths stopped and shower put in place. the worse thing for me with getting over heated is my eyes, it has triggered off an attack of Optical Neuritis. so now i keep the heat down otherwise it makes me feel ill. If i dont feel well i always check my temp and my urine to make sure i havent got a UTI, as i get a lot of them. Heat is my enemy. the disc the guy saw pale was inflammation from ON. I wonder if you have PPMS not RRMS as it hits later and it does affect the eyes, and also the legs and mobility. Keep cool man. lol.
Hi there .. yes I came across that information also when research Uhthoff's, and I also have first hand experience with regard to having baths. The last time I had a bath (a few years ago now) my wife had to help me out, I could hardly move. Showers all the way now. Uhthoff's plays a big part in my condition, every evening after my meal I weaken significantly, and my vision blurs every time without fail! I've learned this is because digestion of food generates heats and increases your core body temp. Heat is also my enemy.
If you were 43 years old when you made this video (and if you uploaded it shortly after filming it), that means you and I are almost exactly the same age. I had suspected you are maybe a few years older than me. When’s your birthday? My birthday is December 29, 1973. (Well, it was until June 29, 2020.) This makes me think about the last few years I was able to drive. For most of that time I thought something was wrong with my brake pedal because it seemed like whenever I touched it, I would slam on the brakes. Now I’m pretty sure that was just my legs becoming weaker. But the change happened so slowly (yet really fast), I didn’t realize it was happening. I’m not sure if you know this, but I’ve had bath emergencies. I used to take really warm/hot baths, usually in response to what I didn’t know at the time was gabapentin withdrawal. I was just cold. So I took hot baths. And they wore me out, and almost drowned me once or twice.
Hey Ryan, I’m 48 this week!! On Thursday to be precise😊 My birthday is 10th Sep 1972. Oh my God!! TOTALLY relate to driving and the break pedal, it was exactly the same for me. I had to change my car from manual (I think you guys call them stick shift) to an Automatic transmission also because I could no longer operate the clutch properly. As for the bath, sounds like you definitely experience Uhthoff’s Phenomenon. I get messages about this all the time, how heat effects them.
I’m so dumb. I keep thinking I’m 47, when I’m actually 46. So my estimation was actually a lot closer than it seems, if you are you able to understand how I was thinking. I had a hard time estimating your age from looking at you. You have certain features that make you appear a few years older than me, but you have such a babyface. And since people think I look a lot younger than I actually am (at least before the beard), I thought you might be anywhere from five years older than me to five years younger than me. I don’t know if the beard makes me look older, but I feel like it may. Everyone seems to think the beard is cool, though. The only reason it’s there is because once upon a time I became too weak to keep shaving. I mean, I could have still shaved, but it would’ve been so much work, and I probably would’ve come out of it pretty bloody. I imagine the fact that we are both pretty thin makes people think we are younger. It seems like everyone I went to school with is fat and ugly now. Dammit, I forgot to respond to everything. Will do that in following comment.
I think we use the terms ‘stick’ and ‘manual’ about equally; probably stick just a little more frequently than manual. I also drove a manual most of my life. The only automatic I’ve ever had was the car I drove the last year or two before I stopped driving. I haven’t driven since April 2016. It had become hard enough for me to drive even before I broke my leg, but once I broke my leg, I didn’t really have a chance. I hate automatics. They’re so boring. But when I still drove a manual, it got to the point where I often stalled because it became so hard for me to put adequate pressure on the clutch. Which was stressful. Yeah, I think I was leaning in the direction of saying I experience that phenomenon. (I’m not gonna bother trying to spell it because you know what I mean.) I like it warm, but heat makes me weak. I’m pretty sure I made a video a couple months ago in which I said something about that. I vaguely remember a comment in response, but I don’t remember much because I think it was right after my awakening. May have been from you, but I think I hadn’t realized at that point that you were a regular. Or that anyone was a regular. For several years after my MS diagnosis, I was aware that most people with MS don’t like heat. But I still did. I still do. It just knocks me out now.
Ello! Yes the body temperature is affected by MS as well. The "heat" problem doesn't occur due to external factors only. You may as well sit in AC and your body temperature will raise at certain intervals of time during the day. Looked up the correlation but couldn't reach any feasible info. Fact is - it does happen solely due to internal dis-functionality due to MS. The Paracetamol remedy haven't tried, but if it works for you, keep it up. With the lowering of the body temperature are also responsible, both Advil & Ibuprofen. Been having MS for 27 yrs now, one can live with quite well...up to a certain point when it becomes really aggressive & nasty. That is the down slope of the progressive phase. Also, it manifests itself differently in each individual. You pretty much have the same spectrum of symptoms as I do....mainly legs (am symptoms free waist up including arms & hands). Look up the MS hug as well....the rib cage grippies.....I call it the grippies :-)
It's interesting you should say that about the heat, because I've noticed that too. I can be outside on a lovely warm day and the heat won't effect me too much, the day can be a lot cooler and my legs/feet will be seriously BURNING but feel cool to the touch! Absolutely crazy. Sometimes my feet can hurt so bad, I can't even sit normally.. what I mean by this is I can't even rest my heals on the floor so I have to lie down to just take my weight off them. I'll keep in mind about the Advil & Ibuprofen - thanks. 27 years is a long time, I've been dealing with symptoms since 2007 but things got really bad in 2012/13 when I had a major relapse and landed a ton of disability. I often wonder what effect another major relapse will have, but I try not to think about it and just live each day as it comes. Yep, whilst I have symptoms in feet and legs.. when I can sometimes feel numbness in fingers tips and round my tummy etc. I also get a severe pain in my chest which starts in the centre (sternum) and radiates outwards down my ribs. I've often wondered if this is the MS hug (grippies lol I like it) but I'm not so sure. The pain never completely goes away and it is HORRENDOUS pain, the worst pain I've ever experienced, I sometimes can't function when its bad and I just have to lie down.. but it feels muscular rather than nerve related. I've had it checked out and the hospital don't know what it is, I'm actually going to make a video about this soon. Thanks Laura, I really appreciate your input and long experience in the subject. Best Regards - Neil.
Hi again Neil. Yes, the pains are muscular! The numbness & weakness is called neuropathy...peripheral nerves get messed up,basically. For the pain, look up Lyrica, you could ask yr dr. for a prescritpion, it alleviates neuropathic pain. Also, be mindful about your diet....try to stay away (like 100%) from gluten primarily. There are tons of gluten free products on the market. Diet is crucial, look this over: www.msdietforwomen.com/ms-diet. It says "for women: but it's basically an MS Diet all around. It is a very comprehensive list of foods. Very very useful and well documented!
+Laura Norton I'm already taking Lyrica otherwise known as Pregabalin in the Uk, if I forget boy do I know about it at night. Thanks for the info on diet, I have noticed certain foods make symptoms worse.
gosh i watch your videos first time, just since few last days searching and reading every information about SM and SLA as i have syptoms for both diseases and exactly the same like you said and i am getting nervous every day, every hour more and more. had 1 appoitment with GP last week, went for the blood test and next week have to back to GP to see the results. was about vit d, vit b12 and few more things. i wanna ask you because the test was also about the immunoglobinum level. did you had that test in first days if you remember and how was the results? thanks. izabela
Hi Izabela, Thank you very much for your comment. Yes, so many diseases have very similar symptoms don't they, and our Doctors have an all out challenge at times trying to figure it all out. Hmmm, I don't really recall a test with regard to "immunoglobinum " levels.. is this part of a blood test perhaps? I might have done but I'm sorry I just don't recall. Regards - Neil.
Oh yes! Got plenty of jumping and vibrating going Izabela. I can wake up in the morning and my legs can literally vibrate from dawn until dusk, sometimes its quite bad but usually its just dull in the background. It's horribly uncomfortable though, wouldn't wish it on anybody. I've also had a funny thing happen to my where my leg would "jump out" after a strange build up of sensation, I've done a video about this you might be interested in.. here's the link: ruclips.net/video/cEkykkEg5Rw/видео.html
Uhthoff's Phenomenon. You wernen't waffling on at all. It was very intresting what you had to say. The Neourologist certainly seemed to give you lots of information, from what you were telling him, Neil.
Thanks Dean, Uhthoff’s is just the worse thing ever for me. It kicks in every day whenever I eat a meal (digestion causes increase in core body temp). It significantly worsens my symptoms temporarily. Thanks for watching.
Hey Nicola - are you in the UK then? It's pretty warm here at the moment, about 26 degrees out there today but its so humid as well. We are due for some rain soon, so hopefully it should cool things down. Yep, the heat definitely does effect MS I'm afraid.. I tend to have a lot of numbness in my feet and legs.. the heat effect me a little bit but not too bad. For me, the Uhthoff's tends to really kick in when I'm unwell with a virus or something to that effect. Regards, Neil.
+Neil Bradley yea I'm in the UK. I'm going to read up on the unthoffs. My legs have been aching like mad past two days. Had a little rumble thunder earlier but no rain yet. Just want it to pour down.
Yep, we've just had a down pour but its stopped now.. still very humid and hasn't cooled down yet. With the heat, your core body temperature will be slightly elevated.. it will be just enough to effect the conductivity of nerves where you have damage to the meylin. I suspect over time you will become accustomed to what effects your symptoms and you will adapt accordingly. If you don't mind my asking, what sort of symptoms have you had with your MS?
+Neil Bradley Yes it's raining here now! I've had pins and needles in my feet and hands since easter last yr. My right leg gets very sore and stiff and numb. My left arm is worse always numb and achy. My joints always aches. I wobble wen I walk , have serious fatigue , memory loss and confusion and sometimes can't get my words out straight or mumble. Serious headaches.
Wooh.. You've got a fair old bit on your plate there to deal with, I hope you're managing ok. I can relate to most of them apart from I don't have the fatigue, memory loss or confusion. I put this down to my not having any brain lesions, I only have lesions on my Spinal Cord.
Hi Kelly, the heat will usually effect your MS symptoms as you probably already know so its important to maintain a comfortable body temperature. I hope you're enjoy my videos - take care.
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Thank you. Now so much makes sense. After a bath I hardly have the mobility to get dressed.
Hello Cindy,
Oh Yes!! I remember having a bath and not being able to get out of it, had to shout the wife! Fortunately its short lived though until your core temperature cools down, then the mobility returns. As I no doubt explained in my video, when I became ill once with a sickness bug, the virus played havoc and I had a high temp.. something as simple as paracetamol brings down the temp (only when you're ill) which worked wonders. Uhthoff's Phenomenon played a key role in my diagnosis of MS.
Thank you for you comment Cindy, and lovely to hear from you.
Regards - Neil.
Thank you Neil so much for sharing and claryfying som much about your type of MS
Your story is very important for my studies! I appriciated all your videos"
Karin in Sweden
Hello Karin, I'm so pleased I'm able to help with your studies in some way. If I can be of any further assistance please feel free to contact me. Remember to check out the MS Vlog Playlist if you haven't already done so where you'll find a few more videos. Best regards - Neil.
I just stumbled upon your videos, and they're great to see. I also have the problem with heat, and just posted a video about my new cooling vests. They seem to work pretty well. Hang in there!
Hey there, thanks for that!😊 I'll be sure to check out your video. Regards - Neil.
Neil,
I am so grateful for you speaking out about this. It gives me a direction to head towards. These past 2 weeks have been excruciating for me and my family. I got a "bacterial infection". My first symptom was stomach pain, then it moved towards my groin area. After 1 night I began having pain in my hands and legs. A burning sensation/painful tingle if that makes any sense. Went to the PCP, just to be told I was fine and I was prescribed anti biotics bc they couldn't find any thing wrong, so the doctor would treat it as a prostate infection. I took the Bactrim for 2 days and my symptoms got way worse. (maybe from my temp rising). My muscles began to lock up, my back hurt uncontrollably, I could not sit still. So I went to Urgent care clinic. More antibiotics, some pain meds. I began taking doxy and metronidazole. I couldn't sleep more than 30 mins to an hr. If I was lucky. Oddly enough, a hot bath seemed to "help" at the time, or so I thought. I went to ER. Blood work looks great the doctor said. No problems. I was literally in tears. I had no clue how that was even possible. Im 27 and have never felt this pain before in my life. The burning wouldn't stop. My muscles began to freeze uo and spasm. I went back to Urgent care. Baclofen was prescribed. It let my muscles relax but pain still there. I'm desperate at this point. The infection finally starts to die off 2-3 days ago, but my pain still remains in my arms and legs. The bottom of my feet are SO tender. I can barely walk. Its like Im a newborn. Now I see the baths are making it worse. When I go to get out of tub, my feet are very sore and its hard to get up. I fell once even and hurt my ribcage. The pain is the worst in my hands and feet, but still prevalent in my calves and forearms. Also, I have been getting injections of antibiotics in my hip, also numb there. I cant even feel the shot. My left toe is numb as well. Its crazy how much sense this is all making now. I started to get a chest infection as well. When I cough or get in sunlight, I can feel the pain radiate across my skin on chest. Thats clearing up too now but still the feet and hands. Whats not consistent with your story is that my body temp has been running slightly below normal. 95-96 deg F. If I can convince my doc to refer me to a neurologist for an mri I think that will be the next step. I keep hoping that the pain will go away on its own. Its so hard to get a doctor to listen here in the States. Thank you brother for posting this info and reading my story. I'm like you, I just cant understand or accept that I lost the ability to walk overnight. I have kids to feed! Now that the infection is gone from my body, I will be able to work through the pain in arms and legs. But now I have a direction to search for answers. Thank you so much Neil.
Hi Walter,
My heart goes out to you my friend, sounds like you've been going through a right old tough time especially the last couple of weeks.
I can totally relate to the symptoms you describe, the burning sensation is nerve pain. I'm very familiar with this, I get it a lot in both my thighs. VERY debilitating isn't it. Also the back, very stiff muscles in the lower back causing considerable weakness for me. And yes all of these horrible symptoms can easily stop you from sleeping, as they have me in the past. This just adds to the problems because then of course you're so tired it's difficult to function.
The underlying infection will be exacerbating the other nerve symptoms for sure. Best thing to get your temp down is good old Paracetamol, I didn't realise this until I was admitted to hospital a while back. Baths increase your core body temperature very slightly which hinder my MS Symptoms. Sounds like this is having an effect on you, even though (I'm assuming) you've not been diagnosed. Hmm just read your temp has been slightly lower, I suspect that would be something to do with your infection. Be interesting to see how you are when this has completely cleared up.
Reading through your message reminds me so much of my very early symptoms. A lot of pain mostly in my hands and feet when it all started ten years ago (burning and redness). Hands still give me a bit of grief, feet are just terrible, legs.. well I've about given up with them!. I think I talk a lot about this is my first video.
I would suggest you start to get all these symptoms checked out asap if you can. I know that. I know it's easier said than done in the states, but an infection should definitely not render you unable to walk overnight. Something else is going on, not wanting to scare you Walter but if it is MS you could be in a relapse. It is treatable, and there are drugs which help reduce the relapse rate. It's important to try and remain calm, and clear headed. Keep a diary of your symptoms, dates, times etc. This is IMPERATIVE to help with a diagnosis. Try and recall any previous episodes that you had, that just got better and went away. This could be the start of something.
Look after yourself, and I'm very grateful to you writing to me and sharing your story on my channel. I wish you the very best, and please feel free to write back anytime, I'd be interested to know how you get on.
Good luck,
Neil.
One last thing Walter, in case you didn't realise since around March 2016 I've made over 30 videos about various different MS topics, some vlogs as well. You can find these in my playlist "My life with Multiple Sclerosis". If you have time, feel free to check them out, they may just help. Neil.
I am working on it. Thank you so much for the response. I have been researching all day and it is a scary thought. I am also going to look into diabetes, because this seems to mirror some of the same exact symptoms as well. I suspect the ER would of tested for that. Which is why I continually bypass it online. But the symptoms seem more and more curiously alike to me. A type 1 diabetic at age 27 seems strange, indeed. But there is a case of a 90 yr old being diagnosed with it. This could explain my abdominal pain and throat infection(thrush from the yeast). Yeast is more active in a diabetic bc of the sugars being readily available to allow the yeast to thrive. Also, I am in the antibiotics right? That kills the good bacteria in my body as well as the bad. Type 1 is an auto immune disease as well, which is why it could mirror the Ms symptoms? Im hopeful. But my hands are red too and blood circulation seems non existent there. Alot of times, type 1 patients run a low temp too. Idk its all so confusing. Part of me thinks I need to go back to the er, the other part says wait for gp in morn. I also have a very strange taste in my mouth which could account for ketones and weight loss(13ilbs in 10 days). I got a glucose machine so I coukd test. Nobody has pricked my finger since all this started, but my blood sugar is pretty low(72). It just seems like they ER would of checked that while I was in there.
Neil I think I found it. My problem. It can also be masked as autoimmune disorder. Candida overgrowth. Its effecting my throat to my tummy. The antibacterial I was on has made it worse. Wow wholly molly. Im going to do this treatment and pray it works. If you have any sore throat or yeast issues, it would be worth looking into. It seems like its going to take awhile to treat but Ill try anything to get rid of this pain!
Hey Walter, sounds like you've been very busy glued to Google😉 I've not heard of Candida Overgrowth but I'm going to look it up shortly. Great work, and let's hope the treatment is successful. I read your previous comment, thanks. Good luck.
Hello Mr Neil, thank you for sharing your experience with this phenomena.I am a physician and I am always interested in looking at the disease from patient's prospective . This is really wry useful and it gave me better idea and understanding of different conditions. Thank again and wish you all the best .
+Abeer Mohammed Hello Abeer, thank you for commenting. I'm glad you found the video interesting and useful. I recently did a further video about Uhthoff's only the other week, you may like to check it out. I've also done several videos about MS on my channel and how it effects me should you be interested. Cheers! Neil.
Ok Neil Thank you so much , definitely I will watch them all.
I agree with this discussion. But I really regret not being able to have a bubble bath or enjoy my (rather costly) whirlpool hot tub. My dog actually enjoys the tub, while I sit nearby and watch. Since he's a service dog, I let him have his fun. Silly but we take what we can get. Thanks for your videos, very helpful. (Florida veteran, USA)
Hey there, thanks for the message. It’s really sad isn’t it that we have to sacrifice the things we’ve enjoyed for so long because of our failing health. Know that your not alone💞 It’s nice that your Dog 🐕 is enjoying the hot tub nevertheless, and yes we do indeed take what we can get. Take care.
morning neil very interesting video I have had this happen to me 20 years ago
before I was first diagnosed with ms I have never had a bath since
and have showers only thanks again
Hi Paul, many years ago this was a classic way to diagnose MS. In fact it was also very instrumental in my own diagnosis.
thanks for the reply stay well
You too Paul. 👍
God bless you Neil I love you in Jesus. As usual I can hear it in your voice but then I can only wish I could know what others see or hear in my life just maybe I could work on changing what they hear and see two have stopped calling me or answering the phone and hang up while I am talking. I'll just leave them alone. Oh the cool weather is here now the heat won't , , , , but then I feel hot when it is not even hot in here. But life goes on. At least I can type for now.
Hi Rick, I'm sorry to hear you're having a tough time at the moment. It's a terrible thing that two people have abandoned you, quite often all we need is people to listen to us. It's difficult for others to understand when they aren't experiencing illness themselves, but it's no excuse to desert you. I'm glad you are still able to interact with an on-line community where there are lots of people that understand your condition and whom are going through the same, or a very similar thing. Take care my friend.
@@NeilBradleyMS Thank you Neil for your kind words it is hard for me to type but I got it done.
I totally understand Rick, always lovely to hear from you 🙏
@@NeilBradleyMS Thank you Neil.
How's things with you Rick?
Hi Neil, I get the leg twitches so hard that one thew me up in the air so hard as I put my worse foot on the floor that I came down on my head, I also get vey hot feet and at times in hot weather can not walk at all the pain is unbelievable.
Hi June, thanks for the comment.. That's just crazy, I hope you didn't hurt yourself too much. Fortunately for me the twitching doesn't happen too often and when it does it's usually at night but it stops me from dropping of to sleep which is annoying. I find your comment about hot feet extremely interesting because it was my feet where all my problems started, numbness, altered sensation and PAINFIL, RED and HOT feet!! Even now sometimes (not at the moment) when I'm just sitting in the normal position with my feet on the floor, my feet can HURT SO BAD and I can't stand it.. I have to lay down and take any weight off them completely. I've also just remembered, back in 2007 when all my symptoms first started, I'd have the same with my hands, painful, red and burning! I used to have to keep running them under cold water, my fingers would feel like they'd been pumped up. I still get this a bit, usually when I'm hot or in the warmer weather but its not as bad thank goodness. I totally appreciate where your coming from. Thanks for the subscription June, don't forget to check out the rest of my videos in my MS Vlog Playlist, I hope you find them interesting. Best Regards - Neil.
Again, I thought the body temp thing was because I was nuts. And I would bet anything, that's why I get more clumsy and everything flairs, walking like a drunk, etc happens when I get up and walk around, or go outside to the garden.
I wonder if sitting in the strong hot sunlight does something similar to symptoms.
Isn't it funny how the penny drops and everything seems to fit into place! Anything that makes your core body temp increase would more than likely effect your symptoms. Even having a soak in a warm bath tends to have an effect, worst of all for me though is when I'm ill with a virus. I tend to be alright in the sun (mostly), but then other times it effects me, quite random really.
In the 19th and early 20th centuries, the effects of heat on people with MS were used in the diagnosis of the condition. They would put the patiet in a hot bath and see what the effect was lol. So you would get clean and end up with a life changing diagnosis.
One of my symptoms was the hot bath. I noticed slowly i couldnt have a hot bath i used to enjoy it but slowly i couldnt. It got so bad one day, i couldnt get out of the bath at all. i lay there called my hubby, and poor guy who suffered with COPD had to try and get me out. we found the best thing was to take the plug out. I slowly cooled down but still needed his help. I landed on the bed like a wet fish, barely able to move.
anyway it was Uhtoffs i know that now. baths stopped and shower put in place. the worse thing for me with getting over heated is my eyes, it has triggered off an attack of Optical Neuritis. so now i keep the heat down otherwise it makes me feel ill. If i dont feel well i always check my temp and my urine to make sure i havent got a UTI, as i get a lot of them.
Heat is my enemy. the disc the guy saw pale was inflammation from ON. I wonder if you have PPMS not RRMS as it hits later and it does affect the eyes, and also the legs and mobility. Keep cool man. lol.
Hi there .. yes I came across that information also when research Uhthoff's, and I also have first hand experience with regard to having baths. The last time I had a bath (a few years ago now) my wife had to help me out, I could hardly move. Showers all the way now. Uhthoff's plays a big part in my condition, every evening after my meal I weaken significantly, and my vision blurs every time without fail! I've learned this is because digestion of food generates heats and increases your core body temp. Heat is also my enemy.
What was the pale thing he was looking for in the eyes?
I think it was called something like “Pallor” to check for paleness, but I’ve never really understood this to be honest.
If you were 43 years old when you made this video (and if you uploaded it shortly after filming it), that means you and I are almost exactly the same age. I had suspected you are maybe a few years older than me.
When’s your birthday? My birthday is December 29, 1973. (Well, it was until June 29, 2020.)
This makes me think about the last few years I was able to drive. For most of that time I thought something was wrong with my brake pedal because it seemed like whenever I touched it, I would slam on the brakes. Now I’m pretty sure that was just my legs becoming weaker. But the change happened so slowly (yet really fast), I didn’t realize it was happening.
I’m not sure if you know this, but I’ve had bath emergencies. I used to take really warm/hot baths, usually in response to what I didn’t know at the time was gabapentin withdrawal. I was just cold. So I took hot baths. And they wore me out, and almost drowned me once or twice.
Hey Ryan, I’m 48 this week!! On Thursday to be precise😊 My birthday is 10th Sep 1972.
Oh my God!! TOTALLY relate to driving and the break pedal, it was exactly the same for me. I had to change my car from manual (I think you guys call them stick shift) to an Automatic transmission also because I could no longer operate the clutch properly.
As for the bath, sounds like you definitely experience Uhthoff’s Phenomenon. I get messages about this all the time, how heat effects them.
I’m so dumb. I keep thinking I’m 47, when I’m actually 46. So my estimation was actually a lot closer than it seems, if you are you able to understand how I was thinking.
I had a hard time estimating your age from looking at you. You have certain features that make you appear a few years older than me, but you have such a babyface. And since people think I look a lot younger than I actually am (at least before the beard), I thought you might be anywhere from five years older than me to five years younger than me. I don’t know if the beard makes me look older, but I feel like it may.
Everyone seems to think the beard is cool, though. The only reason it’s there is because once upon a time I became too weak to keep shaving. I mean, I could have still shaved, but it would’ve been so much work, and I probably would’ve come out of it pretty bloody.
I imagine the fact that we are both pretty thin makes people think we are younger. It seems like everyone I went to school with is fat and ugly now.
Dammit, I forgot to respond to everything. Will do that in following comment.
I think we use the terms ‘stick’ and ‘manual’ about equally; probably stick just a little more frequently than manual.
I also drove a manual most of my life. The only automatic I’ve ever had was the car I drove the last year or two before I stopped driving.
I haven’t driven since April 2016. It had become hard enough for me to drive even before I broke my leg, but once I broke my leg, I didn’t really have a chance.
I hate automatics. They’re so boring. But when I still drove a manual, it got to the point where I often stalled because it became so hard for me to put adequate pressure on the clutch. Which was stressful.
Yeah, I think I was leaning in the direction of saying I experience that phenomenon. (I’m not gonna bother trying to spell it because you know what I mean.) I like it warm, but heat makes me weak. I’m pretty sure I made a video a couple months ago in which I said something about that. I vaguely remember a comment in response, but I don’t remember much because I think it was right after my awakening. May have been from you, but I think I hadn’t realized at that point that you were a regular. Or that anyone was a regular.
For several years after my MS diagnosis, I was aware that most people with MS don’t like heat. But I still did. I still do. It just knocks me out now.
Also, I think you share a birthday with my dad. I don’t know, though, because we’ve never gotten along enough for me to remember it.
Ello! Yes the body temperature is affected by MS as well. The "heat" problem doesn't occur due to external factors only. You may as well sit in AC and your body temperature will raise at certain intervals of time during the day. Looked up the correlation but couldn't reach any feasible info. Fact is - it does happen solely due to internal dis-functionality due to MS. The Paracetamol remedy haven't tried, but if it works for you, keep it up. With the lowering of the body temperature are also responsible, both Advil & Ibuprofen. Been having MS for 27 yrs now, one can live with quite well...up to a certain point when it becomes really aggressive & nasty. That is the down slope of the progressive phase. Also, it manifests itself differently in each individual. You pretty much have the same spectrum of symptoms as I do....mainly legs (am symptoms free waist up including arms & hands). Look up the MS hug as well....the rib cage grippies.....I call it the grippies :-)
It's interesting you should say that about the heat, because I've noticed that too. I can be outside on a lovely warm day and the heat won't effect me too much, the day can be a lot cooler and my legs/feet will be seriously BURNING but feel cool to the touch! Absolutely crazy. Sometimes my feet can hurt so bad, I can't even sit normally.. what I mean by this is I can't even rest my heals on the floor so I have to lie down to just take my weight off them.
I'll keep in mind about the Advil & Ibuprofen - thanks.
27 years is a long time, I've been dealing with symptoms since 2007 but things got really bad in 2012/13 when I had a major relapse and landed a ton of disability. I often wonder what effect another major relapse will have, but I try not to think about it and just live each day as it comes.
Yep, whilst I have symptoms in feet and legs.. when I can sometimes feel numbness in fingers tips and round my tummy etc.
I also get a severe pain in my chest which starts in the centre (sternum) and radiates outwards down my ribs. I've often wondered if this is the MS hug (grippies lol I like it) but I'm not so sure. The pain never completely goes away and it is HORRENDOUS pain, the worst pain I've ever experienced, I sometimes can't function when its bad and I just have to lie down.. but it feels muscular rather than nerve related. I've had it checked out and the hospital don't know what it is, I'm actually going to make a video about this soon.
Thanks Laura, I really appreciate your input and long experience in the subject.
Best Regards - Neil.
Hi again Neil. Yes, the pains are muscular! The numbness & weakness is called neuropathy...peripheral nerves get messed up,basically. For the pain, look up Lyrica, you could ask yr dr. for a prescritpion, it alleviates neuropathic pain. Also, be mindful about your diet....try to stay away (like 100%) from gluten primarily. There are tons of gluten free products on the market. Diet is crucial, look this over: www.msdietforwomen.com/ms-diet. It says "for women: but it's basically an MS Diet all around. It is a very comprehensive list of foods. Very very useful and well documented!
+Laura Norton I'm already taking Lyrica otherwise known as Pregabalin in the Uk, if I forget boy do I know about it at night. Thanks for the info on diet, I have noticed certain foods make symptoms worse.
gosh i watch your videos first time, just since few last days searching and reading every information about SM and SLA as i have syptoms for both diseases and exactly the same like you said and i am getting nervous every day, every hour more and more. had 1 appoitment with GP last week, went for the blood test and next week have to back to GP to see the results. was about vit d, vit b12 and few more things. i wanna ask you because the test was also about the immunoglobinum level. did you had that test in first days if you remember and how was the results? thanks. izabela
and also do you have or had your single muscles in different places jumping, vibration or shaking?
Hi Izabela,
Thank you very much for your comment. Yes, so many diseases have very similar symptoms don't they, and our Doctors have an all out challenge at times trying to figure it all out.
Hmmm, I don't really recall a test with regard to "immunoglobinum " levels.. is this part of a blood test perhaps? I might have done but I'm sorry I just don't recall.
Regards - Neil.
Oh yes! Got plenty of jumping and vibrating going Izabela. I can wake up in the morning and my legs can literally vibrate from dawn until dusk, sometimes its quite bad but usually its just dull in the background. It's horribly uncomfortable though, wouldn't wish it on anybody.
I've also had a funny thing happen to my where my leg would "jump out" after a strange build up of sensation, I've done a video about this you might be interested in.. here's the link:
ruclips.net/video/cEkykkEg5Rw/видео.html
Uhthoff's Phenomenon. You wernen't waffling on at all. It was very intresting what you had to say. The Neourologist certainly seemed to give you lots of information, from what you were telling him, Neil.
Thanks Dean, Uhthoff’s is just the worse thing ever for me. It kicks in every day whenever I eat a meal (digestion causes increase in core body temp). It significantly worsens my symptoms temporarily. Thanks for watching.
Oh god me too. When it had the flue my walking went to shit, I felt awful for a week. I was walking like a Thunderbird puppet.
Oh yes! Anything that bumps up your core body temp will have an effect on mobility, for me anyways.
I've noticed atm with this flipping heatwave we are having that my legs have got worse!
Hey Nicola - are you in the UK then? It's pretty warm here at the moment, about 26 degrees out there today but its so humid as well. We are due for some rain soon, so hopefully it should cool things down. Yep, the heat definitely does effect MS I'm afraid.. I tend to have a lot of numbness in my feet and legs.. the heat effect me a little bit but not too bad. For me, the Uhthoff's tends to really kick in when I'm unwell with a virus or something to that effect. Regards, Neil.
+Neil Bradley yea I'm in the UK. I'm going to read up on the unthoffs. My legs have been aching like mad past two days. Had a little rumble thunder earlier but no rain yet. Just want it to pour down.
Yep, we've just had a down pour but its stopped now.. still very humid and hasn't cooled down yet.
With the heat, your core body temperature will be slightly elevated.. it will be just enough to effect the conductivity of nerves where you have damage to the meylin. I suspect over time you will become accustomed to what effects your symptoms and you will adapt accordingly. If you don't mind my asking, what sort of symptoms have you had with your MS?
+Neil Bradley Yes it's raining here now!
I've had pins and needles in my feet and hands since easter last yr. My right leg gets very sore and stiff and numb. My left arm is worse always numb and achy. My joints always aches. I wobble wen I walk , have serious fatigue , memory loss and confusion and sometimes can't get my words out straight or mumble. Serious headaches.
Wooh.. You've got a fair old bit on your plate there to deal with, I hope you're managing ok. I can relate to most of them apart from I don't have the fatigue, memory loss or confusion. I put this down to my not having any brain lesions, I only have lesions on my Spinal Cord.
i keep thinking I'm having hot flashes and i wake up sweating with fans on.
Hi Kelly, the heat will usually effect your MS symptoms as you probably already know so its important to maintain a comfortable body temperature. I hope you're enjoy my videos - take care.
I now avoid anyone who looks like they have a cold. I get a flu jab every year too.
My wife harasses me to have the flu jab, just never seem to get around to it.. sensible though for sure, maybe next time 😉
Do have it please. It's free if you have MS.
Yeah gets thrown in FOC.