I have seen a lot of different improvements with Ampyra. They are temporary and run out before the next allowable dose, but I’m super grateful for this drug.
This is a more than perfect presentation of what goes on in MS-affected nervous system. Thank You for dumbing it down very little, while keeping it easy to understand.
Great visual Dr. Boster! This is a real problem sometimes. Yesterday I was in line at the grocery store and it was really warm. By the time I went to pay, I couldn't see well enough to check the total on the card machine. Then I had to sit in the car with the AC blasting for a few minutes before I could drive. Fortunately, it does resolve fairly quickly.
I feel so exposed and naked without my mylen 🤣 excellent visual Doc!!! I’m loving the whiteboard use!!! #Sharingiscaring a lot of people were questioning how the Ampyra helps. This is great.
Thank you Dr Boster. I remember you explained exactly this to me in 2010 when I started with 4-AP. Without Ampyra I cannot walk for longer distances and also I get difficulty to doing exercises. I noticed also the duration of the drug for me is between 5 to 6 hours max before it wears out.
Helpful explanation. I’ve taken it for years and was kinda feeling it didn’t make much difference. So I was slow to refill it and didn’t take it for a week. OH MY GOSH!!! I could barely move or walk.it was amazing what it did for me. Never skipped again. I’ve always wondered if MS patients should be supplementing potassium. Given the important role K ions make - it seems like it might be a good idea to make sure there’s no deficiency.
Thank you so very much for all your efforts to help us with MS! Knowledge is power and your channel is amazing. I don't know where you find the time but please know your work is greatly appreciated...
I stopped taking Ampyra because my doctor just said it will help me walk faster, and I never felt like it did. Now you have me thinking about other benefits of taking it that my doctor didn't tell me (or didn't know himself). Thank you for this video👍
Awesome explanation for us Doctor!! Nice way to decode the pharmaco-kinetics of this mysterious medicine. I use this med and without it walking is harder, and with it walking is better. Not marathon level, but improvement.
I am on the generic. Started it a few months ago. It took 7 weeks before I started to notice it helping. It definitely helps with heat 🔥 it's not perfect but I will take any help I can get. Had my hubby watch this and he says wow he really can explain things great so thanks Dr B!!! 😊
I tried it in 2010 it did not do anything for me at that time ,I did not know what is was for . Now that I know 😀❤ and I extremely effected by heat I will try it again . I’m faxing my doctor today for a prescription thanks .❤
My neurologist put me on Ampyra to help improve my walking and tripping, especially on steps. Unfortunately it made things worse. I am currently using a cane and hopefully pt will help.
me too but I opted not to take it and im glad. You check out Neubie - its electro therapy and because of my foot drop I opted to go for that instead and I have to say that its helped a lot in the first session. I dont use my cane or my foot brace.
AMPYRA - I had an allergy to this and ended up going into anaphylactic shock. Ended up in the hospital. Does the pharma info mention what to watch for?
Fascinating. One of my biggest symptoms was the new response to heat (even in Montana). I was on Ampyra for 7 years until I went on Medicare where it was no longer subsidized. From 2017 until now, I was focused on my osteoarthritis and now recovery from my new knee. However, I was thinking the other day that I'm not as bothered by the heat. I wonder if the years on Ampyra is still helping?
As Always Dr. Boster, thank you for all that you do. I often repeat (as best I can) what you share, with the Hope that those who haven't heard, that Maybe they'll remember & repat as well. I myself am EXTREMELY luck to have access to a pool & air conditioning.
I am pretty sure I have MS although I haven't been diagnosed yet...I spent over a year seeing doctors and specialists, undergoing multiple procedures...MRIs, CTs, EKG, X-rays, blood work, nerve conductivity studies, prodding and probing of all sorts, etc. Drop foot on the right, bad tricky knee on the left, unable to push up on my left leg, unable to lift left leg while lying on my back...both legs hurt, tingle, prickle, burn, you name it. They feel heavy to move, and unstable. I can stand in one spot (while in pain) for a while...but the moment I move either foot I feel loss of balance. I have to make baby steps to move and always be ready to hold on to something. I am exercising daily on my own, while in discomfort and fear of falling. I was told that I have axonal nerve damage. Nerve conductivity studies revealed that. Will Ampyra help me? My legs are extra sensitive to temperature, and touch. For example if I walk from carpeted bedroom to tiled bathroom I will go into a shock almost, ready to collapse. My brain gets confused...What about Gabapentin? Which one of these two drugs should I try? Thanks... My quality of life at this point is zero... I'd love to drink myself silly but that would only increase my chances of bad falls.
Thank you for the explanation of how Ampyra works with heat sensitivity and the example of optic neuritis. I only used it as the walking drug which didn’t help me but I enjoyed how it helped with stiffness and the heat . Unfortunately, the cost subsidy ended and at $450/month it was difficult to justify continuing. Doug, coffee in hand from Lyndhurst.
By universal I mean it should show some level effect with a gradient of effectiveness due to mode of action. From what I read it is either effective or not. No gradient. No measurable effect for me after 2 months. It is also exorbitantly expensive for its simple chemistry.
Fascinating! I've been on dalfampridine since last August and didn't know this. My husband and I are curious though; could this also block potassium in a regular/healthy nerve?
Nice explanation!! I have been taking this for about 10 months and think I have small improvements. Was prescribed for walking…. But its possible that its has helped with heat sensitivity as well. I know I can’t tolerate the heat so I avoid it as much as possible. Seems my internal thermometer has quit working. Reading some of the other comments I too have reservations about stopping its use I’m 50/50. Its almost like I just quit sweating cant remember the last time I really sweat. Food for thought Thanks again
I have a question. If a patient with PPMS starts taking Fampyra for a while, then decides to stop, will the patient experience any worsening of symptoms or a new relapse? Thank you so much for your videos. I find them very helpful and informative.
Every doctor is sure that the "message" jumps over myelins? If I suppose the axon as a wire and myelins as insulating shells then the information goes through the axon and myelins protect it to not dissipate. It sounds far more believable then the "electricity" jumping outside the wire. Bing A.I. gave me this answer: Yes, the impulse travels inside the axon. In the axon, the impulse is transmitted in the form of electrical impulses from the cell body to synapses. Electrical impulses cause ion channels in the axon to open and close, causing ions to flow and changes in electrical potential along the axon. This process transmits the impulse along the axon.
I've actually never noticed heat sensitivity. I have noticed that my symptoms are worse in the morning. I go to work in the morning, and my legs get spastic on my bicycle. But going home in the evening I don't have that problem.
Love love your showing us how this works! I can't regulate my my temps, heat is worst, but I also get cold easy to. Heat however does bring back my MS symptoms like Optic neritus. I wonder if this would help with temperature regulation? For both hot and cold.
Dr. Boster I love your channel. Watch every video. How do I talk to my doctor about this drug? He has never mentioned it even when I talk with him about my heat issues. Hope your advice can help with this convo!
Very informative and well explained! I have a question about the non-responders. Is it known why the explained mechanism of action doesn't work in their bodies?
I have been on Ampyra for years? Is there any danger for long term use? Also the side effects list spasticity. How do I know if it’s ms or the ampyra. Also how can it help with spasticity yet be a side effect?
Dr Boster, I have RR MS heat does not affect me as it does other MS patients. It does some in this FL summer heat. What does affect me is the cold temps. AC down too low, or in the winter when I am up north. Why do you think that is?
Great description! I have always wondered about the details of natural long-term symptom improvement (The inefficient channels). Now I have a visual! Wondering if the body also tries to rebuild entire axons to replace ones where the myelin is missing (idea for a future video?) As always, thanks for the awesome video!
Doctor, I've discovered that, in my case, Ampyra works for me if I cycle it. Why? Because, for some odd reason, Ampyra simply stops working for me after a few months. When that happens, I stop taking it for a few months and when I start taking it again, it does its work again in a couple of days. Is that common, doctor?
Thank you for this very helpful video, I've been trying to explain how great sensitivity works but was struggling to get my head around it. I have a question: is it normal for a pseudo-exacerbation triggered by heat to continue even after you have cooled down, maybe for days after the heat is gone?
Mine get worse in heat and cold weather. Will this medicine work for me.. I have weakness, I can't lift my leg unless I take my hand to lift it up. I also have problems walking up steps
Hi there I am in Africa and suffer incredibly in the heat that I can't walk. So I hankful it has been winter 🙏 how could someone like me obtain this medicine?? 🎗️
Salve ,mi chiamo Fortunato, sono affetto da sclerosi multipla da 8 anni,il mio problema più grande è la deambulazione, ho gambe pesanti, soprattutto la destra è pesante e rigida, falcio quando cammino, piego il piede all'indentro perché non riesco ad alzarlo.Come posso migliorare la mia camminata?Mi potete aiutare?Grazie mille
Thank you for that great lesson! I've been trying to figure that out. I shudder to think how bad I would be without Acorda Ampyra! I get a good taste though when I take generic dalfampridine which has a minimal effect at best. Except for the authorized generic sold by Mylan which was the same pill with the same imprint because it was licensed by Acorda. But now Mylan is no longer available and that necessitated spending a lot of energy fighting insurance to get the name brand. I wish someone would address this issue, that being the inadequate controls on the generic manufacturers and their poor, no dismal, effectiveness compared to name brand. With the generics, my legs corkscrew out from under me when I've had rest instead of when I need rest.
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The obligatory question is why it doesn’t works for all people? Excellent technical explanation thank you mr. Boster !
I would say - because everyone is different and there is no 1 med that works for everyone ❤️
I love the visual explanation of this! It makes so much more sense to me now. Thank you, Dr. Boster!🔥🔥🔥🔥
You're welcome! #WeHaveMS #StrongerTogether BosterMS.com
Very good explanations
My doc at UofM just prescribed this to me this morning. Now I have a two week period hoping my insurance approves it.
I have seen a lot of different improvements with Ampyra. They are temporary and run out before the next allowable dose, but I’m super grateful for this drug.
This is a more than perfect presentation of what goes on in MS-affected nervous system. Thank You for dumbing it down very little, while keeping it easy to understand.
Great visual Dr. Boster!
This is a real problem sometimes. Yesterday I was in line at the grocery store and it was really warm. By the time I went to pay, I couldn't see well enough to check the total on the card machine. Then I had to sit in the car with the AC blasting for a few minutes before I could drive. Fortunately, it does resolve fairly quickly.
I feel so exposed and naked without my mylen 🤣 excellent visual Doc!!!
I’m loving the whiteboard use!!!
#Sharingiscaring a lot of people were questioning how the Ampyra helps. This is great.
Thanks for all the hard work you put into the videos, especially on top of you're work and family time, it's greatly appreciated. Flame on🔥🔥🇬🇧
Thanks Doc, I have PPMS and have been on Fampyra for years and this is the best explanation I have heard 👍
Thank you Dr Boster. I remember you explained exactly this to me in 2010 when I started with 4-AP. Without Ampyra I cannot walk for longer distances and also I get difficulty to doing exercises. I noticed also the duration of the drug for me is between 5 to 6 hours max before it wears out.
Helpful explanation. I’ve taken it for years and was kinda feeling it didn’t make much difference. So I was slow to refill it and didn’t take it for a week.
OH MY GOSH!!! I could barely move or walk.it was amazing what it did for me. Never skipped again.
I’ve always wondered if MS patients should be supplementing potassium. Given the important role K ions make - it seems like it might be a good idea to make sure there’s no deficiency.
Wow! That was great! Thank you for breaking it down in an easily understandable manner!
Thank you Dr H!!
I am currently trying Fampyra (I'm in Canada) and I found this information very helpful! Thank you for posting.
Brilliant explanation Dr. Boster! I did not know about the inefficient channels or how Ampyra worked. Thanks!
Most welcome!
Thank you so very much for all your efforts to help us with MS! Knowledge is power and your channel is amazing. I don't know where you find the time but please know your work is greatly appreciated...
Brilliant explanation Dr B ❤️ yes please more like this
Thank you for all you do Dr. Boster ! Excellent teach.
Thanks for watching!
I stopped taking Ampyra because my doctor just said it will help me walk faster, and I never felt like it did. Now you have me thinking about other benefits of taking it that my doctor didn't tell me (or didn't know himself). Thank you for this video👍
Awesome explanation for us Doctor!! Nice way to decode the pharmaco-kinetics of this mysterious medicine. I use this med and without it walking is harder, and with it walking is better. Not marathon level, but improvement.
Thank you Dr Boster! Absolutely love the talk and chalk!! Brilliant explanation of how This medications works. 🔥🔥🔥🔥🔥
I am on the generic. Started it a few months ago. It took 7 weeks before I started to notice it helping.
It definitely helps with heat 🔥 it's not perfect but I will take any help I can get.
Had my hubby watch this and he says wow he really can explain things great so thanks Dr B!!! 😊
Excellent visual. Thanks 🥵
I tried it in 2010 it did not do anything for me at that time ,I did not know what is was for . Now that I know 😀❤ and I extremely effected by heat I will try it again . I’m faxing my doctor today for a prescription thanks .❤
Your explanations are always so useful and easy to understand. Thank you.
My neurologist put me on Ampyra to help improve my walking and tripping, especially on steps. Unfortunately it made things worse. I am currently using a cane and hopefully pt will help.
I was given generic Ampyra and it should be fine. I’m two weeks into o using it.
me too but I opted not to take it and im glad. You check out Neubie - its electro therapy and because of my foot drop I opted to go for that instead and I have to say that its helped a lot in the first session. I dont use my cane or my foot brace.
@@ridhwaanaqureshi716ciao vorrei sapere se con l'elettrostimolatore sei migliorata.grazie
I'm so scared to take dalfampridin. I keep researching it
You are amazing thanks for simplifying things
So clear! Thank you!
good video and information, thank you!
You are so wonderful❤
Thank you for explaining this! I want to try this medication!!!
Thank you Dr Boster 🇨🇦❣️👍🏼
AMPYRA - I had an allergy to this and ended up going into anaphylactic shock. Ended up in the hospital. Does the pharma info mention what to watch for?
It caused me to lose my memory, terrible feeling
Fascinating. One of my biggest symptoms was the new response to heat (even in Montana). I was on Ampyra for 7 years until I went on Medicare where it was no longer subsidized. From 2017 until now, I was focused on my osteoarthritis and now recovery from my new knee. However, I was thinking the other day that I'm not as bothered by the heat. I wonder if the years on Ampyra is still helping?
Interesting theory! Have you looked into the generic for ampyra? It's only $40/month!
Very clear explanation!
Great explanation. I really liked the whiteboard visual. You are really good at distilling complex topics into digestible bites.
I was under the impression that Ampira improved transmission in general, not just in the case of heat sensitivity.
As Always Dr. Boster, thank you for all that you do. I often repeat (as best I can) what you share, with the Hope that those who haven't heard, that Maybe they'll remember & repat as well. I myself am EXTREMELY luck to have access to a pool & air conditioning.
Thanks for sharing!
I am pretty sure I have MS although I haven't been diagnosed yet...I spent over a year seeing doctors and specialists, undergoing multiple procedures...MRIs, CTs, EKG, X-rays, blood work, nerve conductivity studies, prodding and probing of all sorts, etc. Drop foot on the right, bad tricky knee on the left, unable to push up on my left leg, unable to lift left leg while lying on my back...both legs hurt, tingle, prickle, burn, you name it. They feel heavy to move, and unstable. I can stand in one spot (while in pain) for a while...but the moment I move either foot I feel loss of balance. I have to make baby steps to move and always be ready to hold on to something. I am exercising daily on my own, while in discomfort and fear of falling. I was told that I have axonal nerve damage. Nerve conductivity studies revealed that. Will Ampyra help me? My legs are extra sensitive to temperature, and touch. For example if I walk from carpeted bedroom to tiled bathroom I will go into a shock almost, ready to collapse. My brain gets confused...What about Gabapentin? Which one of these two drugs should I try? Thanks... My quality of life at this point is zero... I'd love to drink myself silly but that would only increase my chances of bad falls.
How does Ampyra cause seizures? The better I understand it, the better I can explain to my doctor
Really are a great teacher, thank you for this (I take ampyra every day and now I know what it's doing ☺️
Thank you for the explanation of how Ampyra works with heat sensitivity and the example of optic neuritis. I only used it as the walking drug which didn’t help me but I enjoyed how it helped with stiffness and the heat . Unfortunately, the cost subsidy ended and at $450/month it was difficult to justify continuing. Doug, coffee in hand from Lyndhurst.
Thanks Dr Boster. Please explain why this doesnt work for many people. It seems it should be universal.
No 1 med is universal.
By universal I mean it should show some level effect with a gradient of effectiveness due to mode of action. From what I read it is either effective or not. No gradient. No measurable effect for me after 2 months. It is also exorbitantly expensive for its simple chemistry.
Fascinating! I've been on dalfampridine since last August and didn't know this. My husband and I are curious though; could this also block potassium in a regular/healthy nerve?
Thank you
Welcome!
Nice explanation!! I have been taking this for about 10 months and think I have small improvements. Was prescribed for walking…. But its possible that its has helped with heat sensitivity as well. I know I can’t tolerate the heat so I avoid it as much as possible. Seems my internal thermometer has quit working. Reading some of the other comments I too have reservations about stopping its use I’m 50/50. Its almost like I just quit sweating cant remember the last time I really sweat. Food for thought
Thanks again
Awesome geek moment, thanks
I have a question. If a patient with PPMS starts taking Fampyra for a while, then decides to stop, will the patient experience any worsening of symptoms or a new relapse?
Thank you so much for your videos. I find them very helpful and informative.
Every doctor is sure that the "message" jumps over myelins? If I suppose the axon as a wire and myelins as insulating shells then the information goes through the axon and myelins protect it to not dissipate. It sounds far more believable then the "electricity" jumping outside the wire.
Bing A.I. gave me this answer: Yes, the impulse travels inside the axon. In the axon, the impulse is transmitted in the form of electrical impulses from the cell body to synapses. Electrical impulses cause ion channels in the axon to open and close, causing ions to flow and changes in electrical potential along the axon. This process transmits the impulse along the axon.
I've actually never noticed heat sensitivity. I have noticed that my symptoms are worse in the morning.
I go to work in the morning, and my legs get spastic on my bicycle. But going home in the evening I don't have that problem.
Love love your showing us how this works!
I can't regulate my my temps, heat is worst, but I also get cold easy to.
Heat however does bring back my MS symptoms like Optic neritus.
I wonder if this would help with temperature regulation?
For both hot and cold.
if the damage is done on optic nerve without recovery could ampyra still help?
I need one of those top's
This is a great visual explanation!
*Would the generic, Dalfampridine, work the same way?*
Yes it does!
@@AaronBosterMD Thank You!
115° F today is the heat index where I live yay
Okay just one reply to myself this time just let me say thank you God for air conditioning
Dr. Boster I love your channel. Watch every video. How do I talk to my doctor about this drug? He has never mentioned it even when I talk with him about my heat issues. Hope your advice can help with this convo!
may say, "Hey I learned about a drug that might help me with walking. Would you please prescribe it so I can try it out? It's called Ampyra."
Very informative and well explained! I have a question about the non-responders. Is it known why the explained mechanism of action doesn't work in their bodies?
I have been on Ampyra for years? Is there any danger for long term use? Also the side effects list spasticity. How do I know if it’s ms or the ampyra. Also how can it help with spasticity yet be a side effect?
Fampyra is the same doc ?
Nodes of Renvier!
I thought this was just prescribed for improving walking speed. Though, of course, drugs are used off label.
Dr Boster, I have RR MS heat does not affect me as it does other MS patients. It does some in this FL summer heat. What does affect me is the cold temps. AC down too low, or in the winter when I am up north. Why do you think that is?
After I get overheated it seems to take several days to get my strength back, does that make sense?
Great description! I have always wondered about the details of natural long-term symptom improvement (The inefficient channels). Now I have a visual! Wondering if the body also tries to rebuild entire axons to replace ones where the myelin is missing (idea for a future video?) As always, thanks for the awesome video!
I’ve wondered if Physical Therapy causing repeated use wouldn’t train new neural pathways to make up deficits.
Besides that,what else is Ampyra good for?
What if taking a boatload of potassium Doc? 🧡
Is amyra safe for sezure
Doctor, I've discovered that, in my case, Ampyra works for me if I cycle it. Why? Because, for some odd reason, Ampyra simply stops working for me after a few months. When that happens, I stop taking it for a few months and when I start taking it again, it does its work again in a couple of days. Is that common, doctor?
Can signal transmission be affected by the potassium level in the body? Any possible viability with taking supplements? Great info .Thanks.
Thank you for this very helpful video, I've been trying to explain how great sensitivity works but was struggling to get my head around it. I have a question: is it normal for a pseudo-exacerbation triggered by heat to continue even after you have cooled down, maybe for days after the heat is gone?
Mine get worse in heat and cold weather. Will this medicine work for me.. I have weakness, I can't lift my leg unless I take my hand to lift it up. I also have problems walking up steps
Hi there I am in Africa and suffer incredibly in the heat that I can't walk. So I hankful it has been winter 🙏 how could someone like me obtain this medicine?? 🎗️
ins. won't cover
I had asked my neurologist at the time AMPYRA first came out. She said that I was not able to take the drug, because I had a past brief history of sy
Seizures.
Salve ,mi chiamo Fortunato, sono affetto da sclerosi multipla da 8 anni,il mio problema più grande è la deambulazione, ho gambe pesanti, soprattutto la destra è pesante e rigida, falcio quando cammino, piego il piede all'indentro perché non riesco ad alzarlo.Come posso migliorare la mia camminata?Mi potete aiutare?Grazie mille
Consiglierei di lavorare con un neurofisioterapista.
Does it Also help with Walking
Yes, It does but does not work for all of people. You should try and see if works for you….. does not work for me 😔
Yes. Marketed that way.
How about hands and fingers?
Thank you for that great lesson! I've been trying to figure that out.
I shudder to think how bad I would be without Acorda Ampyra!
I get a good taste though when I take generic dalfampridine which has a minimal effect at best. Except for the authorized generic sold by Mylan which was the same pill with the same imprint because it was licensed by Acorda. But now Mylan is no longer available and that necessitated spending a lot of energy fighting insurance to get the name brand.
I wish someone would address this issue, that being the inadequate controls on the generic manufacturers and their poor, no dismal, effectiveness compared to name brand.
With the generics, my legs corkscrew out from under me when I've had rest instead of when I need rest.