AWESOMELY UPBEAT LIVESTREAM TODAY!! WAY TO CELEBRATE WORLD MS DAY! Thanks for taking the time away from your CMSC I am sure your energy and knowledge will inspire others attending! Really excited to hear that you are considering doing a video on Neuro anatomy!
I've been following you for the near 2 years that you've been posting these AWESOME informational videos, and want to say that it's an amazing thing to see not a single thumbs down (with 384 thumbs up, at this time)!! It's a big thing to smile at when the majority (or 100% in your case) of your followers realize the beautiful asset you are providing here. Your videos have made a tremendous improvement in my own dealing with MS. THANK YOU for all you do, and please don't stop your efforts!! BTW, if your question regarding copying text has not already been answered: You can go to the options setting (...) above, and click on "open transcript", you can see the written text of your videos in a box to the right :) Here you could copy and paste by hilighting the information you need.
This question was posed to me and I am curious at to how YOU and others in our MS Village here would answer it... “What do you wish people knew about MS?” I know...loaded question. My answer is below. I wish people knew... We are NEVER as “good” as we look. Even if we turn down invitations multiple times, please don’t stop inviting. We want to and will attend when we are able. Your compassionate presence is more important than trying to relate to or understand our symptoms If we are trying to do something and are having difficulty, please don’t take it over and do it yourself...simply let us know that you are willing to assist if we want you to. Remember, MS progresses, there will come a time all too soon that assistance will be more than wanted, it will be required. Please, let us do as much as we can for as long as we can. When you get tired and frustrated about having to do something for us...take a moment to realize that we are 100 times more hurt and frustrated about never being able to do if for ourselves again. Be a blessing by counting your blessings and sacrifice with love and joy. Try to learn to read the eyes of the pwMS in your life. We have learned to smile through our pain for the sake of others... Depression is real and hard to ask for help dealing with. Never underestimate the impact of MS invisible symptoms. We need love and laughter and some days that means you need to come to us for us to receive it. Please know that energy is a very precious commodity. Please don’t be offended if ... We say , “Sorry, I just can’t ...” “Maybe, later” “Can you ...?” “Do you mind if we call it a day?” “Oh, You guys go ahead without me.” Etc. etc. etc. Neurological Pain is unlike any other pain...please don’t try to compare it. Please, KNOW that YOU are important in the life of your MS family member or friend. MS takes too much already, don’t allow it to take you too.
Oh...if you run into Julia regarding the cooling vest, let her know that the cooling has helped me concentrate better and less fatigue in my “Understanding MS” online course thus far getting 100% on all of my quizzes thanks to staying COOL !!!
My invisible symptoms are optic neuritis and I have issues with it in both eyes. I also have neuropathic pain in my low back, numbness and tingling in hands, legs, and feet. A huge thanks to Dr. Boster for taking the time to do these videos! Show some love and support and thumbs up this video!!!! #worldmsday
In honor of World MS Day you asked for invisible symptoms: Most people know about the common ones like Fatigue, Weakness, Cog Fog, Pins/Needles, etc. So I thought I’d touch on some less common that I experience. Unquenchable ITCH Unceasing Internal Quiver Sensory Sensitivity Internal Thunder Sound upon eyes closing or jaw movement Delays between brain and hand control or word search Tongue Tremors Nausea (projectile vomiting for hours to the point of having to drink to prevent dry heaving) Trigeminal Neuralgia Pain Dizziness Vertigo Loss of appetite Loss of taste Weak chew/swallow Loss of voice - although noted as visible Light Sensitivity with vision issues Loss of sexual interest These are just some of the less common that I endure BUT... MS Grieving IMO most people fail to realize the invisible symptom of the grieving process one goes through caused by MS, the lack of understanding from family and friends, etc. It’s different from depression or anxiety and is an ongoing process that can easily be triggered by symptoms and environment. Sometimes it’s like being in a coffin with a glass window as the world continues without you. With each function taken by MS, with each event missed, with each family member or friend that has drifted away...there is a grieving process. You grieve for the you that is no more, And for the laughter you shared with others before. You grieve for the words that once flowed with ease, As you look to another with eyes that say, “Help me please”. You grieve for your talent that inspired others to smile, And have to accept that your body just wants to sit still for a while. You grieve for the care giver that is still instinctively you, As you sit and watch another do what you feel you need to do. You grieve for the person you once thought another to be, As your heart breaks when they fail to understand or see. Grieving is meant for when a life comes to an end, Yet with MS to grieve is a lifetime to spend.
Vertigo, poor gait, numbness, burning pain, freezing pain, cog fog, stuttering slurring speech, heat related optic neuritis, sensitive to heat, ms hug fatigue etc. Happily most of this has improved with my med.
Please consider doing a video on Tecfidera. Why would someone choose it, how it works, efficacy, ideal patients for it, your personal opinion, better options....
I'm so glad your medication is helping with your symptoms! Do you mind me asking what med you are taking? I love hearing what works for other people :)
Mary C I've been on Tysabri for 12months - diagnosed and put straight of this drug. It has stopped the progression of my highly active ms in its tracks. Last MRI showed no new lesions and fading of existing lesions. Are you on meds?
@@krazykbrooks6208 Thats so amazing that Tysabri is working so well! I have been on Gilenya since 2011. I wish I could try Tysabri but my doctor prefers Ocrevus for me because I'm JCV+. I'm thinking of switching to Ocrevus for something stronger. Thanks for replying and all the best to you!
I keep missing your live feed so sorry Could you please comment about lesions on the brain and spine and how many is a lot and talk about it thank you.
@tracy, You made me smile! I know your reply is in print, but I can hear you joy and excitement in your words! Blessing be upon your journey AND safe travel to Ohio!
@@Mkaismile thanks, friend. Mostly relief that the insurance company approved out-of-state care (WV has no MS specialists or specialty clinics) AND that I got a June appt date (the clinic had said August initially). I still need to figure out if they've set up a consultative visit (which Dr. B has described as 'half a day'), or just a regular office visit (the scheduling person said I would be there an hour and a half). Anyhoo, thanks for the good wishes. I really want a 2nd set of TRUSTED eyes confirming diagnosis and initial treatment plan, so I'm confident we're on the right track.
Darn, I was taking a nap and missed you live. You were speaking on Muscle fatigue that I would like to comment on. I have PPMS and myoclonic jerks. My muscles also continue through the day, popping all over. I am not sure if this is why I have muscle fatigue. For those that have this, I recommend using an electric tooth brush. If you do not have a shower chair, get one or have something to sit on when you get out of the shower. I got to where I could not get up out of the bathtub so my shower chair converts to a bathtub chair. I can not walk to my mail box. It is like the ever ready bunny that ran out of his juice. I have gotten stuck between my kitchen and bedroom, so, make sure you have a walker when You notice you are starting to have muscle weakness or fatigue.
I’m 4/4. I’ve never smoked. Just got diagnosed and just started a DMT. I’m not an athlete but I’ve always enjoyed video tape workouts. I used to be an avid biker and wondered why I would be so weak after riding in the sun....now I know why...I love the question about what would happen if one doesn’t take a medicine. I’ve wondered about that. My vitamin D has always been low. It was 43.4 most recently so the doc said that was good and you’re saying 50 is better which is why I’m still taking it (and why I said I am 4/4) lol
Missed it too..trying to stop smoking..way too hot, had to pass by Atlantic city, thought I was gonna die at 86 degrees, jeez, next time doc..working on all..glad I came across you, you make it easy to understand, thanks!! Yeah. Total cog fog, fatigue, ms hug, I am a total mess, learning...watching everything you put out....can't sleep, burning legs, woah..I need to..take it slow..
I wish I would have been on live. I listened until the very end and was blown away by your comment regarding African Americans and disease progression! I was just diagnosed this year and I am no spring chicken. My doctor discussed numerous medications and allowed me to make my own decision and I went with an injection which you mentioned as not being ideal. I don’t recall my doctor mentioning the medication you’ve named here. I’ve only done four injections so far. I follow up with my doc next week. I’ll mention what you’re saying here and see what he says...
Oh my goodness the description of cog fog ...you nailed it. I am so much better in the mornings then say even the later part of the morning. By nature I have always been that person that just keeps on pushing/going/doing until a job or project is done. This for me personally has been one of the most debilitating realities of MS. Going from that chic who raised five kids single handedly with the attitude that I could do anything a man can do and give birth while doing it to 'I can't'.... well I appreciate all you do for us.
Clearly my spinal cord is all messed up! Heat intolerance, back pain, numbness and tingling in my legs, fatigue, bladder function, sensorial hyper sensitivity. All weird and obnoxious. By all means, do the neuro anatomy video!!! Englighten us! Question (you probably addressed it already). Can MS progress despite the fact that an MRI doesn't show activity?
Three hours late! Andréa, in the UK! In the UK,at least here up North, they're rather backwards, in comparison with the USA! Doctor hasn't even tested my vitamin D! When I asked, they had no idea! My Ex-Husband used to say, but you are Always ill, and tired! Hence being my Ex! Muscle spasms and spasticity are hellish.Pain awful. Even trouble typing this, I'm only diagnosed this Xmas. Been 15years of symptoms.
@@Mkaismile Thank you very much, that's a lovely thing to say! ♥You have no idea how your kind words have given me an awesome start to my day!! So, again, Thank You! ♥ Have a wonderful weekend! Namaste, Andréa.X♥X.
@Andre`a, You are most welcome! Took 18 years for my diagnosis...you are not alone. Now you have both answer to the big “Why” of how you have been feeling all these years. It’s time to put your MS Warrior hat on and learn how and what you can manage through this journey. I can tell by your “Namaste” that you already know how to listen to your body. Which means you are on strong and positive grounding! I am humbled to be a part of brightening your day! Blessings be upon your journey, Smile it’s just me...Janeel
My daughter was diagnosed last year she was 16yrs old then, we are here in Dubai UAE. we knew she have MS when she has bells palsy’s. She have anti depressants medicine, vit d. Doctor said that we have to wait till she reach 18yrs old to have gilenya.
I smoke cannabis it helps my pains... I have chronic migraines, neck pain back pain, vertigo, pseudobulbar, generalized anxiety disorder, vision and hearing issues, numbness, pins and needles, difficulty swallowing heat intolerance, bladder ect.
2-3 in the 4/4. Istopped smoking but. Use a nicorine based vaper. Also due to severe fatigue, imbalance cogfog. Fall a lot. I hug walls. Walking is only excersie. Does that count?
Any research connection between MS and TGA (temporary global amnesia)? I had a TGA episode about 4 yrs ago . . . A briefer episode about 6 mos after that, and another one the week of my MS diagnosis (just last month).
Before i was dx with ms at the age of 61 i was diagnosed with a variety of things most turned out to be wrong dx's. One thing i was dx as having was Raynauds phenomenon. My fingers would freeze around a coffee cup handle or a grocery cart handle and my middle finger(s) would turn pure white and would lose complete feeling . Like it was dead. I would place my hand in my armpit or somewhere warm and after a half hour it would return to normal . I am now wondering if that is a spasticity rather than a blood vessel /circulation problem . Any thoughts?
Hi Karen. May I ask how old you were when your symptoms started? Mine started when I was 25. They've been coming and going in flares to this day. I'm now 59 and still undiagnosed.
@@pattirandall6977 i first started getting it in my 20's. But it wasn't as bad at first . It started out only when I was real cold outside. But now it happens whenever . Its not a daily thing either. I started taking photos of my fingers and getting it developed(before digital) just so I could show the doctor. I can be holding a hot drink or a cold drink, it doesn't matter. One doctor early on said it was hormones. Lol but when it does happen i can't just straighten my fingers. I have to use my other hand to pry it open.
@@pattirandall6977 well in hindsight i had symptoms since my 20s. I was a dancer my whole life almost. Started when I was 6. Did musical theater and as an adult did ballroom dancing. (Similar to Dancing with the Stars). I was very in tuned to my body. Very gradually I noticed things not quite right . I have lower back pain, weird sensations in my legs, etc. Every morning I woke I could barely move but later in the day I was fine. That led to a dx of rheumatiod arthritis. I had stomach issues, I lost vision in one eye for a week. At the time I used cocaine. My eyesight loss was explained by the doctor as being from using cocaine. So I quit. Meanwhile another doctor retested me for RA and said I didnt have it. So I was fed up after while with having symptoms and being told it was psychsomatic or hormones or misdiagnoses etc. I endured the pain and all. Move ahead To 2009, I was having stronger body pain symptoms and bad fatigue. I was dx with Fibromyalgia. But was not feeling well. I started feeling like I had the flu 24/7. I was working in a grocery store by then . Couldn't dance any longer. I kept going to doctors and they accused me of drug seeking. I asked them to please tell me what was wrong. Why were my feet numb, why so fatigue that I was in bed when I wasnt at work. No results . The fatigue was so bad I couldn't get out of bed to work. One day on the way to work I suddenly lost control of my bowels. I didnt know what was happening. I missed work and the next day I was fired. That meant I only had two months of medical ins before i would lose it. Well i was tested for everything, supposivly. Even went to a neurolgist who scraped the bottom of my feet and said I wasnt numb and sent me away. i lost my apt and had to go live in my car . Couldn't get disability with no dx. Was refused unemployment too. I was so sick i couldnt sit up. Move ahead another year, still sleeping in my car i dragged myself to a homeless clinic. The most wonderful caring doctors i ever had. They found out what was wrong. I had a few things i was suffering from for at least 25 years. The first thing they found was I had chronic Hep C. That shocked me because I had been off drugs for 35 years and was never a drinker. They helped me get into a drug study for a new treatment because medicaid wouldnt pay for treatment until I got sicker. My whole life had been turned upside down and they wanted me to get sicker before they would cover medication(which at the time cost over a hundred thousand) . So i got treated with the new drug they were testing at the University Hosp. But still that dx didnt cover all the symptons. The homeless clinic set me up with a neurologist. She did a neuro exam and scheduled me for an MRI. She told me she suspected MS. And she was right. I am so grateful to the homeless clinic and my neurologist for listening to me and believing me. That was 2 1/2 years ago. Im getting SS now and found subsidize housing. Now I am trying to get my life together and make sense of the past dxs and past symptoms. Its so hard having one disease with invisible symptoms but having another or two with similar symptoms of fatigue and body pain, i realized how sick I really was during the last 6-7 years. Because the fibro also had those symptoms. The fatigue I feel now from MS is intense but before my Hepatitis was treated the fatigue was 10 times worse. I honestly don't know how I endured. I do know I can and will survive what the future holds. I have been doing advocacy for Hep C, to educate and get people tested,especially baby boomers. My new man in my life is a HepC advocate in BC Canada. When i get my MS more stable and my life more stable I will probably get into MS advocacy. No one should have to go through hell and back to get diagnosed and into a treatment for MS. That is my story . Sorry it was a long one. Just remember we are warriors and we are strong inside. Keep seeking answers. I am.
OMG Karen! NO ONE should have to endure what you have! That is totally inexcusable what the ignorance of those doctors put you through! I've been through the awful stress of misdiagnoses, people misunderstanding me, being unable to work, etc. also, but NO WHERE like you've been through! I am so sorry! You have my prayers. ❤ Are you on Facebook? If you are, please send me a friend request. My name on FB is Patti Hartman Randall.
Hello - I have all the invisible symptoms you mentioned. My question is, what are your beliefs on the disappearing lesions on a MRI? Many are reporting it could be the damaged tissues have washed away in a sense and that this is a serious happening. I move a lot and run into more doctors who want to put me through re-evaluations because my brain MRI lesions are not seen on a T 1.5 MRI but were on a T3. It's frustrating and has left me without care now.
Doctor Boster, does source of Vitamin D (i.e., whether foodstuff, sunlight, or supplement) matter or are the levels a more important factor to consider? 👍💗👍 from NJ!!!
I only find out if I happen to check my email or when I am on Facebook the Ohio Clinic will give me a notification. Fortunately Doc B, follows up on questions posted after the livestream.
Copy and paste solved 👌 Dr. B. In case this is posted. I found a solution to # the copy and paste problem in live. Or mystery I guess. Check dm. For I just didn't want to share my email for whole internet lol, P.s. -divine. I give. 4 my comments are still.not showing up for me :( anywhere. Except live. Hummm.
I have a lot of questions as you probably noticed . 😁. For 30 yrs now when i go to get a tooth filled and am given novacaine it doesnt work. I have to get an extra one or two shots . My dentist assumed that maybe my nerve pathways were different in my mouth. The big problem is that after an hour all the shots suddenly are working. I stay super numb for an extended time, i can also feel my heartbeat . I also have to go home and go to bed for 3-4 hours afterwards because I feel sick all over . I've never been able to return to school or work right afterwards. I am wondering now if it is a result of MS that I need so much of the novacaine. I need to go back to the dentist for work but really hate it . Ever know of this happening?
Aloha Karen, Have you ever sled if maybe they can give it to you early? Maybe if you can come in an hour before the work is to be done? Depending on your dentist that might require you to actually have to schedule two appointments in one day an hour apart. But if it works recovery time should be easier for you. Just a thought anyway. Good luck!
Dr. B i believe i figured out the copy paste problem. In live. Check dm.for link As i dont want to put my email onhere. Im still working out the specifics but the idea is its possible. _divine. After writing this i was sucessful in the link i sent u. I truely believe i fail at apps. Sorrylol
Thx u very much. Dr. Arron! Yay. It posted! Also plz ignore any extra comments .there might be one more. When i was trying 2 post this. My appoligizes. !n wow. Im just so excited. For ive been working on this for a little bit now..in the backround. Actually....thinking there just has to be a way. But i always failed. Lol. N eventually i felt it was truly not possible. Either .but tada! Well today as the cloud lifted and i got it finally... . 😆 Happy day. :) ! Yes! ~divine.🐾
![BOWKYLION - วิงวอน (ex-change) [Official MV]](http://i.ytimg.com/vi/cLdnZWDaO-w/mqdefault.jpg)
AWESOMELY UPBEAT LIVESTREAM TODAY!! WAY TO CELEBRATE WORLD MS DAY!
Thanks for taking the time away from your CMSC I am sure your energy and knowledge will inspire others attending!
Really excited to hear that you are considering doing a video on Neuro anatomy!
👍👍
I've been following you for the near 2 years that you've been posting these AWESOME informational videos, and want to say that it's an amazing thing to see not a single thumbs down (with 384 thumbs up, at this time)!! It's a big thing to smile at when the majority (or 100% in your case) of your followers realize the beautiful asset you are providing here. Your videos have made a tremendous improvement in my own dealing with MS. THANK YOU for all you do, and please don't stop your efforts!!
BTW, if your question regarding copying text has not already been answered: You can go to the options setting (...) above, and click on "open transcript", you can see the written text of your videos in a box to the right :) Here you could copy and paste by hilighting the information you need.
This question was posed to me and I am curious at to how YOU and others in our MS Village here would answer it...
“What do you wish people knew about MS?”
I know...loaded question. My answer is below.
I wish people knew...
We are NEVER as “good” as we look.
Even if we turn down invitations multiple times, please don’t stop inviting. We want to and will attend when we are able.
Your compassionate presence is more important than trying to relate to or understand our symptoms
If we are trying to do something and are having difficulty, please don’t take it over and do it yourself...simply let us know that you are willing to assist if we want you to. Remember, MS progresses, there will come a time all too soon that assistance will be more than wanted, it will be required. Please, let us do as much as we can for as long as we can.
When you get tired and frustrated about having to do something for us...take a moment to realize that we are 100 times more hurt and frustrated about never being able to do if for ourselves again. Be a blessing by counting your blessings and sacrifice with love and joy.
Try to learn to read the eyes of the pwMS in your life. We have learned to smile through our pain for the sake of others... Depression is real and hard to ask for help dealing with.
Never underestimate the impact of MS invisible symptoms.
We need love and laughter and some days that means you need to come to us for us to receive it.
Please know that energy is a very precious commodity. Please don’t be offended if ...
We say ,
“Sorry, I just can’t ...”
“Maybe, later”
“Can you ...?”
“Do you mind if we call it a day?”
“Oh, You guys go ahead without me.”
Etc. etc. etc.
Neurological Pain is unlike any other pain...please don’t try to compare it.
Please, KNOW that YOU are important in the life of your MS family member or friend. MS takes too much already, don’t allow it to take you too.
This is amazing. thank you for sharing this! #WeHaveMS
Please do a video on neuro anatomy!!!!
I second the motion!
fatigue, cog fog and numbness/tingling... :-(
Oh...if you run into Julia regarding the cooling vest, let her know that the cooling has helped me concentrate better and less fatigue in my “Understanding MS” online course thus far getting 100% on all of my quizzes thanks to staying COOL !!!
That is so awesome!!
Thank you for taking time out of your meeting to chat and answer questions for us. You are loved.
My invisible symptoms are optic neuritis and I have issues with it in both eyes. I also have neuropathic pain in my low back, numbness and tingling in hands, legs, and feet. A huge thanks to Dr. Boster for taking the time to do these videos! Show some love and support and thumbs up this video!!!! #worldmsday
In honor of World MS Day you asked for invisible symptoms:
Most people know about the common ones like Fatigue, Weakness, Cog Fog, Pins/Needles, etc. So I thought I’d touch on some less common that I experience.
Unquenchable ITCH
Unceasing Internal Quiver
Sensory Sensitivity
Internal Thunder Sound upon eyes closing or jaw movement
Delays between brain and hand control or word search
Tongue Tremors
Nausea (projectile vomiting for hours to the point of having to drink to prevent dry heaving)
Trigeminal Neuralgia Pain
Dizziness
Vertigo
Loss of appetite
Loss of taste
Weak chew/swallow
Loss of voice - although noted as visible
Light Sensitivity with vision issues
Loss of sexual interest
These are just some of the less common that I endure BUT...
MS Grieving
IMO most people fail to realize the invisible symptom of the grieving process one goes through caused by MS, the lack of understanding from family and friends, etc.
It’s different from depression or anxiety and is an ongoing process that can easily be triggered by symptoms and environment.
Sometimes it’s like being in a coffin with a glass window as the world continues without you. With each function taken by MS, with each event missed, with each family member or friend that has drifted away...there is a grieving process.
You grieve for the you that is no more,
And for the laughter you shared with others before.
You grieve for the words that once flowed with ease,
As you look to another with eyes that say, “Help me please”.
You grieve for your talent that inspired others to smile,
And have to accept that your body just wants to sit still for a while.
You grieve for the care giver that is still instinctively you,
As you sit and watch another do what you feel you need to do.
You grieve for the person you once thought another to be,
As your heart breaks when they fail to understand or see.
Grieving is meant for when a life comes to an end,
Yet with MS to grieve is a lifetime to spend.
Vertigo, poor gait, numbness, burning pain, freezing pain, cog fog, stuttering slurring speech, heat related optic neuritis, sensitive to heat, ms hug fatigue etc. Happily most of this has improved with my med.
Please consider doing a video on Tecfidera. Why would someone choose it, how it works, efficacy, ideal patients for it, your personal opinion, better options....
I'm so glad your medication is helping with your symptoms! Do you mind me asking what med you are taking? I love hearing what works for other people :)
Mary C I've been on Tysabri for 12months - diagnosed and put straight of this drug. It has stopped the progression of my highly active ms in its tracks. Last MRI showed no new lesions and fading of existing lesions. Are you on meds?
Ms hugs are the worse !!!
@@krazykbrooks6208 Thats so amazing that Tysabri is working so well! I have been on Gilenya since 2011. I wish I could try Tysabri but my doctor prefers Ocrevus for me because I'm JCV+. I'm thinking of switching to Ocrevus for something stronger. Thanks for replying and all the best to you!
I keep missing your live feed so sorry Could you please comment about lesions on the brain and spine and how many is a lot and talk about it thank you.
Got my appt with you and a colleague, Dr. B! Woo hoo!
Awesome Sauce!
So happy for you Tracy!
@@Mkaismile meeeee toooooo!
@tracy,
You made me smile!
I know your reply is in print, but I can hear you joy and excitement in your words!
Blessing be upon your journey AND safe travel to Ohio!
@@Mkaismile thanks, friend. Mostly relief that the insurance company approved out-of-state care (WV has no MS specialists or specialty clinics) AND that I got a June appt date (the clinic had said August initially). I still need to figure out if they've set up a consultative visit (which Dr. B has described as 'half a day'), or just a regular office visit (the scheduling person said I would be there an hour and a half).
Anyhoo, thanks for the good wishes. I really want a 2nd set of TRUSTED eyes confirming diagnosis and initial treatment plan, so I'm confident we're on the right track.
Missed it! Dang it. Just came in from walking The Beasts in the West Virginia rain, 2.5 miles in the drizzle with my sweetie on our 32nd anniversary!
#WeHaveMS
Happy Anniversary!
Darn, I was taking a nap and missed you live. You were speaking on Muscle fatigue that I would like to comment on. I have PPMS and myoclonic jerks. My muscles also continue through the day, popping all over. I am not sure if this is why I have muscle fatigue. For those that have this, I recommend using an electric tooth brush. If you do not have a shower chair, get one or have something to sit on when you get out of the shower. I got to where I could not get up out of the bathtub so my shower chair converts to a bathtub chair. I can not walk to my mail box. It is like the ever ready bunny that ran out of his juice. I have gotten stuck between my kitchen and bedroom, so, make sure you have a walker when You notice you are starting to have muscle weakness or fatigue.
Yes a neuro anatomy lecture.
I’m 4/4. I’ve never smoked. Just got diagnosed and just started a DMT. I’m not an athlete but I’ve always enjoyed video tape workouts. I used to be an avid biker and wondered why I would be so weak after riding in the sun....now I know why...I love the question about what would happen if one doesn’t take a medicine. I’ve wondered about that. My vitamin D has always been low. It was 43.4 most recently so the doc said that was good and you’re saying 50 is better which is why I’m still taking it (and why I said I am 4/4) lol
You Rock! Keep taking care of you! We all need empowering examples like you in the world!
Missed it too..trying to stop smoking..way too hot, had to pass by Atlantic city, thought I was gonna die at 86 degrees, jeez, next time doc..working on all..glad I came across you, you make it easy to understand, thanks!! Yeah. Total cog fog, fatigue, ms hug, I am a total mess, learning...watching everything you put out....can't sleep, burning legs, woah..I need to..take it slow..
I wish I would have been on live. I listened until the very end and was blown away by your comment regarding African Americans and disease progression! I was just diagnosed this year and I am no spring chicken. My doctor discussed numerous medications and allowed me to make my own decision and I went with an injection which you mentioned as not being ideal. I don’t recall my doctor mentioning the medication you’ve named here. I’ve only done four injections so far. I follow up with my doc next week. I’ll mention what you’re saying here and see what he says...
Since being diagnosed March 27, the invisible symptoms are more pronounced and irritating like tingling and stiffness
Oh my goodness the description of cog fog ...you nailed it. I am so much better in the mornings then say even the later part of the morning. By nature I have always been that person that just keeps on pushing/going/doing until a job or project is done. This for me personally has been one of the most debilitating realities of MS. Going from that chic who raised five kids single handedly with the attitude that I could do anything a man can do and give birth while doing it to 'I can't'.... well I appreciate all you do for us.
#WeHaveMS
Thank you so much for all you do! I know I would absolutely appreciate a video on neuroanatomy. Please do!
yes, me too :)
Clearly my spinal cord is all messed up! Heat intolerance, back pain, numbness and tingling in my legs, fatigue, bladder function, sensorial hyper sensitivity. All weird and obnoxious. By all means, do the neuro anatomy video!!! Englighten us!
Question (you probably addressed it already). Can MS progress despite the fact that an MRI doesn't show activity?
Yes to neuro anatomy 101 video!
right on
Thank you for another wonderful Q&A. Doug from Lyndhurst. Neuro anatomy lecture would be great.
Do glad you visited Seattle when we had a few pleasant days
Its a beautiful part of our country
Hello from Beirut Lebanon
Howdy Madonna Akiki!
Three hours late! Andréa, in the UK! In the UK,at least here up North, they're rather backwards, in comparison with the USA!
Doctor hasn't even tested my vitamin D!
When I asked, they had no idea!
My Ex-Husband used to say, but you are Always ill, and tired! Hence being my Ex!
Muscle spasms and spasticity are hellish.Pain awful. Even trouble typing this, I'm only diagnosed this Xmas. Been 15years of symptoms.
Glad that you finally got diagnosed, now you can get the help and support that you need.
@@Mkaismile Thank you very much, that's a lovely thing to say! ♥You have no idea how your kind words have given me an awesome start to my day!!
So, again, Thank You! ♥
Have a wonderful weekend! Namaste, Andréa.X♥X.
@Andre`a, You are most welcome! Took 18 years for my diagnosis...you are not alone. Now you have both answer to the big “Why” of how you have been feeling all these years. It’s time to put your MS Warrior hat on and learn how and what you can manage through this journey. I can tell by your “Namaste” that you already know how to listen to your body. Which means you are on strong and positive grounding!
I am humbled to be a part of brightening your day!
Blessings be upon your journey, Smile it’s just me...Janeel
3 for 4 here -- neuro just got the insurance co to agree to cover Ocrevus, but gotta do Hep B lab, and schedule 1st infusion. Getting there!
NICE!
My daughter was diagnosed last year she was 16yrs old then, we are here in Dubai UAE. we knew she have MS when she has bells palsy’s. She have anti depressants medicine, vit d. Doctor said that we have to wait till she reach 18yrs old to have gilenya.
+Carlota Abuzaid Gilenya was approved for 16yo in the USA.
Would love a neuro anatomy 101 video!
Coolio. I'll add it to my list
London!
Right on Robby Bobby Robby!
Nice to meet you at CMSC!
👊#CMSC2019
@@AaronBosterMD 👍
I smoke cannabis it helps my pains...
I have chronic migraines, neck pain back pain, vertigo, pseudobulbar, generalized anxiety disorder, vision and hearing issues, numbness, pins and needles, difficulty swallowing heat intolerance, bladder ect.
#MSWarrior
Missed u by 120 minutes!
Sorry I missed you! I hope you enjoy the replay Diann!
Yup, I am late too!
Hibbing, MN
2-3 in the 4/4. Istopped smoking but. Use a nicorine based vaper. Also due to severe fatigue, imbalance cogfog. Fall a lot. I hug walls. Walking is only excersie. Does that count?
Have you thought about doing some water aerobics or walking in pool, or chair based yoga?
Kansas
I was diagnosed at 18 ..
I'm 24 now ..
Howdy!
3-4...still smoking ..but almost there..
My goodness! Reading the comments I can spot symptoms that I difn't know how to name...😑
Right on!
Belfast 👍
Howdy Niall!
Any research connection between MS and TGA (temporary global amnesia)? I had a TGA episode about 4 yrs ago . . . A briefer episode about 6 mos after that, and another one the week of my MS diagnosis (just last month).
Shakira from FL question: Are there medicines to deal with Fatigue?
Before i was dx with ms at the age of 61 i was diagnosed with a variety of things most turned out to be wrong dx's. One thing i was dx as having was Raynauds phenomenon. My fingers would freeze around a coffee cup handle or a grocery cart handle and my middle finger(s) would turn pure white and would lose complete feeling . Like it was dead. I would place my hand in my armpit or somewhere warm and after a half hour it would return to normal . I am now wondering if that is a spasticity rather than a blood vessel /circulation problem . Any thoughts?
Hi Karen. May I ask how old you were when your symptoms started? Mine started when I was 25. They've been coming and going in flares to this day. I'm now 59 and still undiagnosed.
@@pattirandall6977 i first started getting it in my 20's. But it wasn't as bad at first . It started out only when I was real cold outside. But now it happens whenever . Its not a daily thing either. I started taking photos of my fingers and getting it developed(before digital) just so I could show the doctor. I can be holding a hot drink or a cold drink, it doesn't matter. One doctor early on said it was hormones. Lol but when it does happen i can't just straighten my fingers. I have to use my other hand to pry it open.
Trying to get to the root of neurological problems is frustrating to say the least!
What cinched your diagnosis?
@@pattirandall6977 well in hindsight i had symptoms since my 20s. I was a dancer my whole life almost. Started when I was 6. Did musical theater and as an adult did ballroom dancing. (Similar to Dancing with the Stars). I was very in tuned to my body. Very gradually I noticed things not quite right . I have lower back pain, weird sensations in my legs, etc. Every morning I woke I could barely move but later in the day I was fine. That led to a dx of rheumatiod arthritis. I had stomach issues, I lost vision in one eye for a week. At the time I used cocaine. My eyesight loss was explained by the doctor as being from using cocaine. So I quit. Meanwhile another doctor retested me for RA and said I didnt have it. So I was fed up after while with having symptoms and being told it was psychsomatic or hormones or misdiagnoses etc. I endured the pain and all. Move ahead To 2009, I was having stronger body pain symptoms and bad fatigue. I was dx with Fibromyalgia. But was not feeling well. I started feeling like I had the flu 24/7. I was working in a grocery store by then . Couldn't dance any longer. I kept going to doctors and they accused me of drug seeking. I asked them to please tell me what was wrong. Why were my feet numb, why so fatigue that I was in bed when I wasnt at work. No results . The fatigue was so bad I couldn't get out of bed to work. One day on the way to work I suddenly lost control of my bowels. I didnt know what was happening. I missed work and the next day I was fired. That meant I only had two months of medical ins before i would lose it. Well i was tested for everything, supposivly. Even went to a neurolgist who scraped the bottom of my feet and said I wasnt numb and sent me away. i lost my apt and had to go live in my car . Couldn't get disability with no dx. Was refused unemployment too. I was so sick i couldnt sit up. Move ahead another year, still sleeping in my car i dragged myself to a homeless clinic. The most wonderful caring doctors i ever had. They found out what was wrong. I had a few things i was suffering from for at least 25 years. The first thing they found was I had chronic Hep C. That shocked me because I had been off drugs for 35 years and was never a drinker. They helped me get into a drug study for a new treatment because medicaid wouldnt pay for treatment until I got sicker. My whole life had been turned upside down and they wanted me to get sicker before they would cover medication(which at the time cost over a hundred thousand) . So i got treated with the new drug they were testing at the University Hosp. But still that dx didnt cover all the symptons. The homeless clinic set me up with a neurologist. She did a neuro exam and scheduled me for an MRI. She told me she suspected MS. And she was right. I am so grateful to the homeless clinic and my neurologist for listening to me and believing me. That was 2 1/2 years ago. Im getting SS now and found subsidize housing. Now I am trying to get my life together and make sense of the past dxs and past symptoms. Its so hard having one disease with invisible symptoms but having another or two with similar symptoms of fatigue and body pain, i realized how sick I really was during the last 6-7 years. Because the fibro also had those symptoms. The fatigue I feel now from MS is intense but before my Hepatitis was treated the fatigue was 10 times worse. I honestly don't know how I endured. I do know I can and will survive what the future holds. I have been doing advocacy for Hep C, to educate and get people tested,especially baby boomers. My new man in my life is a HepC advocate in BC Canada. When i get my MS more stable and my life more stable I will probably get into MS advocacy. No one should have to go through hell and back to get diagnosed and into a treatment for MS. That is my story . Sorry it was a long one. Just remember we are warriors and we are strong inside. Keep seeking answers. I am.
OMG Karen! NO ONE should have to endure what you have! That is totally inexcusable what the ignorance of those doctors put you through! I've been through the awful stress of misdiagnoses, people misunderstanding me, being unable to work, etc. also, but NO WHERE like you've been through! I am so sorry! You have my prayers. ❤
Are you on Facebook? If you are, please send me a friend request. My name on FB is Patti Hartman Randall.
Hello - I have all the invisible symptoms you mentioned. My question is, what are your beliefs on the disappearing lesions on a MRI? Many are reporting it could be the damaged tissues have washed away in a sense and that this is a serious happening. I move a lot and run into more doctors who want to put me through re-evaluations because my brain MRI lesions are not seen on a T 1.5 MRI but were on a T3. It's frustrating and has left me without care now.
Hi doc I hope you r fine please I have questions what's your comment about mild ms cuz I have it and I'm taking aubagio 14 mg
Doctor Boster, does source of Vitamin D (i.e., whether foodstuff, sunlight, or supplement) matter or are the levels a more important factor to consider? 👍💗👍 from NJ!!!
we adjust based on levels. Not sure one source is superior to another
37:40 ✊🏽 😊 🙏
ha!
Unfortunately TH-cam didn't notify me you where live grrrrrrr. 😫
I only find out if I happen to check my email or when I am on Facebook the Ohio Clinic will give me a notification. Fortunately Doc B, follows up on questions posted after the livestream.
Copy and paste solved 👌
Dr. B.
In case this is posted.
I found a solution to
# the copy and paste problem in live. Or mystery
I guess. Check dm. For I just didn't want to share my email for whole internet lol,
P.s.
-divine.
I give.
4 my comments are still.not showing up for me :( anywhere. Except live.
Hummm.
Ok...
Is divine just inpatient.. lol
Sorry lol
~divine
I have a lot of questions as you probably noticed . 😁. For 30 yrs now when i go to get a tooth filled and am given novacaine it doesnt work. I have to get an extra one or two shots . My dentist assumed that maybe my nerve pathways were different in my mouth. The big problem is that after an hour all the shots suddenly are working. I stay super numb for an extended time, i can also feel my heartbeat . I also have to go home and go to bed for 3-4 hours afterwards because I feel sick all over . I've never been able to return to school or work right afterwards. I am wondering now if it is a result of MS that I need so much of the novacaine. I need to go back to the dentist for work but really hate it . Ever know of this happening?
Aloha Karen,
Have you ever sled if maybe they can give it to you early? Maybe if you can come in an hour before the work is to be done? Depending on your dentist that might require you to actually have to schedule two appointments in one day an hour apart. But if it works recovery time should be easier for you. Just a thought anyway.
Good luck!
#WeHaveMS
18 again😊🤣🤣❤️💕
;)
I’m 4 for 4. 👊🏼😎
awesome sauce!
Dr. B
i believe i figured out the copy paste problem.
In live.
Check dm.for link As i dont want to put my email onhere.
Im still working out the specifics but the idea is its possible.
_divine.
After writing this i was sucessful in the link i sent u. I truely believe i fail at apps. Sorrylol
Thx u very much. Dr. Arron!
Yay. It posted!
Also plz ignore any extra comments .there might be one more. When i was trying 2 post this. My appoligizes.
!n wow. Im just so excited. For ive been working on this for a little bit now..in the backround. Actually....thinking there just has to be a way. But i always failed. Lol.
N eventually i felt it was truly not possible. Either .but tada!
Well today as the cloud lifted and i got it finally...
. 😆
Happy day. :) ! Yes!
~divine.🐾