I agree that it's comforting to know that numbness does not necessarily mean the MS is progressing, nor does it mean you are having a relapse. All ten toes and two fingers on my dominant hand are numb. I was diagnosed in 2012 and have had very little MS activity since my diagnosis. These new symptoms came out of the blue recently. I look forward to when it stops because it's super annoying. Thankfully, there's no pain.
I agree! Even without pain, numbness makes life not only more difficult but less enjoyable. Being able to feel the textures of things is like wearing Latex gloves all the time. I hope your numbness goes away - as you say, you've been almost symptom free up to now.
It's the same story for me. I've been symptom free since 2013 except for a tiny stint with eye twitching in 2016. I went meds free since the age of 17. At age 28 now, just 4 days ago I started to feel a numb path on my thigh. I've cried, I've driven myself insane reading, I've been so upset. But hearing that other people experience numbness and that it may possibly come and go really calms my nerves (hahah literally).. Thank you for your video. I'm going to try and relax about it
What you described about nerve fiber fatigue, I also experience with cognition. At some point, my brain refuses to process what I’m hearing or reading, and nothing makes sense anymore. It’s as if I’m trying to make sense out of nonsense.
Yes it is - and dangerous, too, since the nerves in our skin give us important information about our environment. I can be more easily cut and bruised because my fingers are far less sensitive to touch and temperature than they once were. I'm glad to know you don't deal with pain; I have a friend who does, and it really is awful!
Thank you for this detailed information. My symptoms are similar to yours. Constant numbness in my hands. More so the left hand. My neurologist prescribed baclofen and gabapentin which I did not take. Like you its more annoying than painful. Those meds could cause more issues than I want. I was never offered steriods which surprises me.
Absolutely true. I used to take gabapentin, mostly for restless leg (which I now treat with topical magnesium gel); it never did a thing for the numbness in my fingers. You're right that side effects of meds could be worse than the symptom itself. Yes, that is a surprise about the steroids, though I know some docs don't like to prescribe them.
Once again you read my mind. I have started the hand and foot numbness. I dropped and broke my red Correll ware coffee cup a couple of days ago, so there's that. This was very helpful. I was wondering if the MS was progressing in my spine. I had a MRI on my brain and it was very little change since 2012. Didn't have spine checked. The damage in my T10 and T11 area is why I haven't been able to walk or move my legs for about 15 years or so. So glad they make wheelchairs and vehicles to carry them in. Take care.
I'm glad my video was timely for you, Donna. I've never had an MRI of my spine, either. Not sure why not. I hope that red cup wasn't a favorite! Not sure Corelle is making red cups these days - though there are lots of them on ebay, so maybe you'll get a new one for Christmas. Take care!
@@youandmeandmultiplescleros402 It's never too late to learn. We have a 4 feet deep oval pool 18 ft and while we can't do the breast stroke really, just the fact that you can stand down with your head above the water is good enough to move around the perimeter with the resistance of the water as you walk through it really helps. Unfortunately we have seasonal weather in Canada (Ontario) and so usage is summer months only, but between the swimming and sunshine I feel almost normal with symptoms. I hope you can find a way to swim. Thank you for your response. I wish you well, BTW I really enjoyed your video.
I would suggest watching Dr. Alan Macdonald‘s RUclips discussion on his autopsies on 10 MS patients where he found parasites in all of their cerebral spinal fluid‘s.
Diagnosed 2000, I've experienced numbness and tingling in ankles, feet from the start. I started having problems with my hands around 8 yrs ago. I've tried the gabapenton and also the amytriptyline without much success for a few years after initial diagnosis. I was perscribed Solumedrol as an IV mumerous times for exacerbations when I was still trying to work at a job. I would have a home nurse come into my home and setup the IV and stay until it was done each day, for 5 days. Then I would be perscribed perdnizone to taper off of the solumedrol, taking less each day for another few days. I enjoyed your video and wanted to give you some feedback on your questions on these medications. Hope you are as good as you can be, and take care!
Thank you for sharing your experiences! I've tried tables tin but finally stopped it after seeing I was about the same without it. MS is particular to each person, and yet we can learn a lot from one another.
I know there are people living with MS since 1980s, which gives me hope. I had first simptoms around a decade ago, maybe a bit earlier, but had no idea, what that is - just a slight dizziness sometimes, thought I'm tired and need to get more sleep. 6,5 years ago it got much more serious and throughout whole 2022 my ability to walk shrunk, now I can make around 500m in 10-15 minutes, but *only on smooth* pavement, if it's gravel, sand or a walkway with potholes, I'm doomed to be exhausted after only a couple of dozen of meters. Speaking of numbness, and tingling, it affects my left palm (slightly, been like that since late 2019, but it's better now) and right foot (not all of the time). I wonder, if anyone else has this impression or is it just me - I feel much better after eating. Maybe that's because I'm sitting down and resting while eating, but what if it has something to do with glucose level?
MS is a shameless thief, as your story so perfectly shows. It can be so discouraging to lose abilities like walking. But I can tell that you are looking for ways to keep MS from getting the upper hand. You mention feeling better after eating, and I've found that to be true as long as I avoid fatty or sugary foods. Do you see a difference with different foods, or with caffeine or alcohol? I'm still learning what I should and shouldn't eat. What you describe about numbness being intermittent is true for me as well, by the way.
@@youandmeandmultiplescleros402 I'd say eating something sweet makes me feel better, BUT it's "sweet" by my European standards, not American ones, where everything already has too much sugar added. I believe snacking on a couple of pieces of a hematogen bar works for me (it's sort of a candy bar with a protein from cow's blood... don't ask, it's an Eastern European thing 🤣supposedly it's good for improving one's blood production, just like red wine, meat and some other products). Maybe it's and indication of me being near to becoming a diabetic, maybe not, no idea. Not so long ago I googled on the effects of coffee / caffeine, all sources could found said the same - it improves condition of people with MS. Alcohol does the contrary - worsens our health, might even trigger another crisis, but I've always consumed very little booze, so that doesn't worry me.
@@youandmeandmultiplescleros402 P.S. Lately I've seen several mentions of Mediterranean diet improving condition of MS, maybe I will make some changes to my habits, but my diet isn't so radically different from it anyway (sure Northern Europe, where I live, has different cousine, but it's not like radically different and hard to get in our supermarkets), I guess the only really noticeable change I should make is excluding really fat French cheese and switch to cottage cheese or Mozzarella, and I should also drop salted nuts from a list of my snacks.
@@TotalRookie_LV you’re taking a very reasonable approach to isolating what foods help or harm your MS. I like it! By the way, my grandparents were from Prague, so I grew up withEastern European food. It’s among my fondest memories.
Is your feeling back yet? I have terrible numbness and weakness in my hands/fingers. Numb arms too. Life has become so hard for the past 6 weeks. I can't knit or write. It's soooo hard.
I understand how you feel...the numbness in my fingers and toes is no better. I certainly can't write legibly (now I wish I had learned how to touch-type!), and I can't button or fasten anything. That button hook I've mentioned has been a huge help in getting dressed by myself. MS is the gift that keeps on taking! 🙁
I have these symptoms but my neurologist is convinced it's FND. I am celiac as well which is related to MS. I hope I can çonvimce him this time as I am overwhelmed with numbness s awful sharp pain, balance awful fatigue. Do you find sometimes you function to a high level and then crash?
Absolutely! During my first 20+ years with MS, my symptoms came and went. It was quite frustrating. Now the numbness in my fingers is pretty constant, which is easier to live with, weird to say, because I just assume I need to be careful to avoid dropping things. But that fatigue you mention - that isn't predictable. It probably messes with my life more than any other symptom. Has your neurologist done an MRI? That would probably provide the answer as to whether you have MS.
That definitely sounds neurological. I haven't experienced that, exactly, but I have had numbness in my face, arm, or leg that only lasts a short while. The nerves just don't conduct messages like they're supposed to.
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I agree that it's comforting to know that numbness does not necessarily mean the MS is progressing, nor does it mean you are having a relapse. All ten toes and two fingers on my dominant hand are numb. I was diagnosed in 2012 and have had very little MS activity since my diagnosis. These new symptoms came out of the blue recently. I look forward to when it stops because it's super annoying. Thankfully, there's no pain.
I agree! Even without pain, numbness makes life not only more difficult but less enjoyable. Being able to feel the textures of things is like wearing Latex gloves all the time. I hope your numbness goes away - as you say, you've been almost symptom free up to now.
It's the same story for me. I've been symptom free since 2013 except for a tiny stint with eye twitching in 2016. I went meds free since the age of 17. At age 28 now, just 4 days ago I started to feel a numb path on my thigh. I've cried, I've driven myself insane reading, I've been so upset.
But hearing that other people experience numbness and that it may possibly come and go really calms my nerves (hahah literally)..
Thank you for your video. I'm going to try and relax about it
What you described about nerve fiber fatigue, I also experience with cognition. At some point, my brain refuses to process what I’m hearing or reading, and nothing makes sense anymore. It’s as if I’m trying to make sense out of nonsense.
How frustrating that must be! I have that, too, but only with math. At some point, my brain just says, "No. Won't."
Numbness and tingling in my last three fingers, arm under and side.and freezing all right side. Glad to find you today. Mri scheduled for wed.
Your first MRI? I wish you the best of results!
@@youandmeandmultiplescleros402 1st cervical
I have had MS for maybe 10 years now but just diagnosed last September. I have tingling and tightness in my knees. It’s so bothersome 😢
Yes it is - and dangerous, too, since the nerves in our skin give us important information about our environment. I can be more easily cut and bruised because my fingers are far less sensitive to touch and temperature than they once were. I'm glad to know you don't deal with pain; I have a friend who does, and it really is awful!
@@youandmeandmultiplescleros402 Oh no, I deal with pain! Lol every day
Thank you for this detailed information. My symptoms are similar to yours. Constant numbness in my hands. More so the left hand. My neurologist prescribed baclofen and gabapentin which I did not take. Like you its more annoying than painful. Those meds could cause more issues than I want. I was never offered steriods which surprises me.
Absolutely true. I used to take gabapentin, mostly for restless leg (which I now treat with topical magnesium gel); it never did a thing for the numbness in my fingers. You're right that side effects of meds could be worse than the symptom itself. Yes, that is a surprise about the steroids, though I know some docs don't like to prescribe them.
Once again you read my mind. I have started the hand and foot numbness. I dropped and broke my red Correll ware coffee cup a couple of days ago, so there's that. This was very helpful. I was wondering if the MS was progressing in my spine. I had a MRI on my brain and it was very little change since 2012. Didn't have spine checked. The damage in my T10 and T11 area is why I haven't been able to walk or move my legs for about 15 years or so. So glad they make wheelchairs and vehicles to carry them in. Take care.
I'm glad my video was timely for you, Donna. I've never had an MRI of my spine, either. Not sure why not. I hope that red cup wasn't a favorite! Not sure Corelle is making red cups these days - though there are lots of them on ebay, so maybe you'll get a new one for Christmas. Take care!
helpful - thank you. I'm waiting for a diagnosis
I hope you get good news! At least these days they can reach a diagnosis than they could in 1985. 🙃
I thought it was only me that had writing changes and struggle with it.
Looks like it's another unhappy side effect of MS. In war they would consider it "collateral damage"! 🤓
Swimming is a great exercise since it keeps you cooler, and takes weight/pressure off while doing so.
I have heard that! Makes me wish I'd learned how to swim back in the day.🤓
@@youandmeandmultiplescleros402 It's never too late to learn. We have a 4 feet deep oval pool 18 ft and while we can't do the breast stroke really, just the fact that you can stand down with your head above the water is good enough to move around the perimeter with the resistance of the water as you walk through it really helps. Unfortunately we have seasonal weather in Canada (Ontario) and so usage is summer months only, but between the swimming and sunshine I feel almost normal with symptoms. I hope you can find a way to swim. Thank you for your response. I wish you well, BTW I really enjoyed your video.
@@traceytansley1659 I like that suggestion! Thanks so much for that - take care and keep doing the things that keep MS at bay!
Thanks for the information, really appreciate.
I would suggest watching Dr. Alan Macdonald‘s RUclips discussion on his autopsies on 10 MS patients where he found parasites in all of their cerebral spinal fluid‘s.
Wow - interesting. Thanks!
Diagnosed 2000, I've experienced numbness and tingling in ankles, feet from the start. I started having problems with my hands around 8 yrs ago. I've tried the gabapenton and also the amytriptyline without much success for a few years after initial diagnosis. I was perscribed Solumedrol as an IV mumerous times for exacerbations when I was still trying to work at a job. I would have a home nurse come into my home and setup the IV and stay until it was done each day, for 5 days. Then I would be perscribed perdnizone to taper off of the solumedrol, taking less each day for another few days. I enjoyed your video and wanted to give you some feedback on your questions on these medications. Hope you are as good as you can be, and take care!
Thank you for sharing your experiences! I've tried tables tin but finally stopped it after seeing I was about the same without it. MS is particular to each person, and yet we can learn a lot from one another.
My autocorrect was sooo off: not tables tin but gabapentin. Sorry!
@youandmeandmultiplescleros402 I knew that wAs a typo. But i couldn't imagine what
🙃@@mychinapig Weirdest autocorrect ever!
I know there are people living with MS since 1980s, which gives me hope. I had first simptoms around a decade ago, maybe a bit earlier, but had no idea, what that is - just a slight dizziness sometimes, thought I'm tired and need to get more sleep. 6,5 years ago it got much more serious and throughout whole 2022 my ability to walk shrunk, now I can make around 500m in 10-15 minutes, but *only on smooth* pavement, if it's gravel, sand or a walkway with potholes, I'm doomed to be exhausted after only a couple of dozen of meters.
Speaking of numbness, and tingling, it affects my left palm (slightly, been like that since late 2019, but it's better now) and right foot (not all of the time).
I wonder, if anyone else has this impression or is it just me - I feel much better after eating. Maybe that's because I'm sitting down and resting while eating, but what if it has something to do with glucose level?
MS is a shameless thief, as your story so perfectly shows. It can be so discouraging to lose abilities like walking. But I can tell that you are looking for ways to keep MS from getting the upper hand. You mention feeling better after eating, and I've found that to be true as long as I avoid fatty or sugary foods. Do you see a difference with different foods, or with caffeine or alcohol? I'm still learning what I should and shouldn't eat. What you describe about numbness being intermittent is true for me as well, by the way.
@@youandmeandmultiplescleros402
I'd say eating something sweet makes me feel better, BUT it's "sweet" by my European standards, not American ones, where everything already has too much sugar added. I believe snacking on a couple of pieces of a hematogen bar works for me (it's sort of a candy bar with a protein from cow's blood... don't ask, it's an Eastern European thing 🤣supposedly it's good for improving one's blood production, just like red wine, meat and some other products). Maybe it's and indication of me being near to becoming a diabetic, maybe not, no idea.
Not so long ago I googled on the effects of coffee / caffeine, all sources could found said the same - it improves condition of people with MS. Alcohol does the contrary - worsens our health, might even trigger another crisis, but I've always consumed very little booze, so that doesn't worry me.
@@youandmeandmultiplescleros402
P.S. Lately I've seen several mentions of Mediterranean diet improving condition of MS, maybe I will make some changes to my habits, but my diet isn't so radically different from it anyway (sure Northern Europe, where I live, has different cousine, but it's not like radically different and hard to get in our supermarkets), I guess the only really noticeable change I should make is excluding really fat French cheese and switch to cottage cheese or Mozzarella, and I should also drop salted nuts from a list of my snacks.
@@TotalRookie_LV you’re taking a very reasonable approach to isolating what foods help or harm your MS. I like it! By the way, my grandparents were from Prague, so I grew up withEastern European food. It’s among my fondest memories.
Is your feeling back yet? I have terrible numbness and weakness in my hands/fingers. Numb arms too. Life has become so hard for the past 6 weeks. I can't knit or write. It's soooo hard.
I understand how you feel...the numbness in my fingers and toes is no better. I certainly can't write legibly (now I wish I had learned how to touch-type!), and I can't button or fasten anything. That button hook I've mentioned has been a huge help in getting dressed by myself. MS is the gift that keeps on taking! 🙁
Pam. My name is Ellen ppms 33 yrs. Can we discuss everything?!!!!
I’d love to!
I have these symptoms but my neurologist is convinced it's FND. I am celiac as well which is related to MS. I hope I can çonvimce him this time as I am overwhelmed with numbness s awful sharp pain, balance awful fatigue. Do you find sometimes you function to a high level and then crash?
Absolutely! During my first 20+ years with MS, my symptoms came and went. It was quite frustrating. Now the numbness in my fingers is pretty constant, which is easier to live with, weird to say, because I just assume I need to be careful to avoid dropping things. But that fatigue you mention - that isn't predictable. It probably messes with my life more than any other symptom. Has your neurologist done an MRI? That would probably provide the answer as to whether you have MS.
I have Correll. Glasses are going fast, don't like to drink from plastc
I’m with you on plastic! I use ceramic or glass, but not plastic.
I’m wondering if anyone else experiences this, but when I have a shower and the water is too warm, patches of my skin go numb 😅
That definitely sounds neurological. I haven't experienced that, exactly, but I have had numbness in my face, arm, or leg that only lasts a short while. The nerves just don't conduct messages like they're supposed to.