I am PPMS. started with left side weakness and a weird foot which felt numb like when you walk through grass which is frozen and you have a hole in your welly. Over the years this has got worse and worse and from my waist down i experience ongoing charlie horses in legs and really stiffness getting up like I am walking in concrete. as my PPMS is slowly advancing my mobility is worsening. I dont have overall pain. Mine is purely nerve pain worse in left foot, i have had TM, and I started with a bad bout of ON and boy did my eye hurt(left side), The way i deal with my pain is to love my MS. Yes i look after it really well, i make sure my weight is good i eat really healthy never eat processed food, i cut down on gluten, I drink lots of water. My sugar intake is limited. Oh i dont drink alcohol or smoke. so i am 71 now and been dealing with it since 2000 still mostly mobile. ALSO another way to deal with it is to concentrate on other things. when my pain is at its worse which is first thing (legs on fire, spasms horrendous tingling) I look for things to do or read like this youtube article. Too many MSERS in my lifetime have just focused always on the bad, but believe me if MS had not slowed me down there would have been a high chance of me having a stroke through over work and stress. Stress for me is the worse factor too for MS. The worse thing for me was all the drugs to help the pain. They just turned me into a zombie and more prone to falling, so I quit everything, and you know what i go bed early watch some comedy fall asleep and only reason why i wake is my pain, or my bladder, but i just lay back down and ignore it all going on and sleep mostly 7 to 8 hours. I NEVER sleep in the day no way. You know my main issues really are BLADDER and BOWEL. UGH. OH TOTALLY AGREE with you about other conditions. I have met MSERS who have had awful pain in back and shoulder its their MS and end up with gallbladder disease, I lost a friend who had MS a long time. She started to have pain back, doctor "its your MS", over time she got worse and finally we lost her to spinal cord cancer. ITS THE DOCTORS WHO NEED TO STOP TREATING EVERYONE WITH PAIN AS IT IS YOUR MS. The are lazy and dont look outside the box. I had the HUG it was my MS no it wasnt I had a minor heart issue. STOP being lazy doctors please. If we have one autoimmune disease we are more likely to have 2.
Soooo true U r over 70 n i am over 55...female But i have same thoughts n feelings like u , I tell myself i will do the best i can everyday for myself, for my kids (17Y;24Y)both with autoimmune conditions My son n daughter r both my heroes They went thto hell n back n still r surviving....🙏 My husband doesnt help much😭 but we R survivors HE ALSO HAD AN AUTOIMMUNE CONDITION BUT WE SUPPORTED HIM NOW HE IS MUCH BETTER WHEREAS DOCTORS COULDN'T DIAGNOSE OUR CONDITIONS FOR YRS N IT BECAME WORSE...MY HUSBAND WAS NOT REALLY INTERESTED IN OUR CONDITIONS N WE HARDLY HAD ANY SUPPORT... BUT I BELIEVE IN GOD 🙏
I have suffered for many years with MS diagnosed at Cedars in Los Angeles...I do have lesion sat T4...I have been fortunate to remain in remitting-relapsing...lately I am experiencing what I describe as a radiating pain..constantly...seemingly from that T4 area of my spine..while in the midst of terrible chronic stress...but just wondering if this pain is real....I also am experiencing other spinal problems in the L4/5 area bulging dis s..etc..just constant pain...consequently my life is at a stand still...and depression..any thoughts would be greatly appreciated...
I have MS 30 years pain in my back for the last five years it has been I’m bearable I was wondering if you can tell me where I can have an appointment with you and see if you can help me thank you
as do i have the shock on my spine all the way to the bottom and it radiate to my legs is so stressfull my writing has gone bad to 😔 your not alone lets fight this thing
I have MS for 18 years but I have just been told that I may have lupus and fibromyalgia. Can I really have all 3??? I also have DDD which I needed to have back surgery for because of the pain I was having but I still have a lot pain but it's better then it was. Can someone really have all these different diseases and I also have high blood pressure, high cholesterol and early glaucoma & carpal tunnel. I get a lot of headaches too. What can you tell me Can someone have all these different diseases or have you ever seen someone like me before????. I got sick with MS when I 20. I'm lucky that I have RRMS type 1 and I don't have yet all the complications with my MS. Please Help 🙏
yes you can. MS is an autoimmune disease so is lupus. As to FMS they dont really know what is causing that but it can be linked with autoimmune diseases. I have been checked for Lupus.
Where I get in touch with him? I have fibromyalgia and migraine but my neurologist is asking me to have MRI. She thinks that I also have MS. I’m from Philippines.
Going through this exact thing. I have fibro and chronic migraines and y neurologist thinks I may have MS, especially since my mom and aunt were diagnosed with MS so I am going through a series of tests. Best of luck to you!
Wish this Doctor reads this because I was suffering pain all over my body and head. For years it was so bad I was losing my ability to function. I also got Botox still in pain. I tried everything in the book for this pain. The only thing that worked was methadone on 30.mg it works wonders. Best thing about the methadone I don't an increase. I really had to fight myself for years because I never wanted to be on this medication. Doctor had proscribed it before with no luck. I would not drink it as planed or proscribed until I had to realize would I continue to suffer or live pain free. Today I drink my meds and I'm fine. Don't need an increase thanks to Botox and methadone.
Be aware if you must go off it is a monster. I think you should try morphine etc. if you must wean off it is so much easier. I love feeling better with a small does like you have. But I had to go back to my pan management and due to people who abuse doctors and sell pain meds causing stricter rules and WOW it's an awful feeling. Just be aware is al. Feel better and God bless
So ca you discuss the relationship between mgus and ms? Would spinal fluid read differently than bone marrow biopsy? I'm one of those complicated patients.
Oh my gosh ive been trying to figure out my chronic pain sense i was 12 and ive gotten hundreds of blood tests…. And this feels exactlylike whats going on. Im on duloxotine and amnatryptaline and it helps but not alot oh my god.
I am writing for my sister with Ms right now she is in a wheelchair and she shakes uncontrollable, can't feed or do anything for herself. What I want to know with the right med will her be able to walk or stop shake again? From Trinidad.
I am so sorry to read that about your sister. How long has she had MS, THE less you use your muscles the more your likely to tremor. Can she not go back to her care provider and ask them for help and advise?
I have Epilepsy, myofacial pain syndrom, migraines, vertigo and fibromyalgia. So guess what those meds make my seizures worse. Then, I had a bleeding ulcer and perforated Colon from other meds. Quality of life isn't very good. I can barely walk at 51 years old.
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I am PPMS. started with left side weakness and a weird foot which felt numb like when you walk through grass which is frozen and you have a hole in your welly. Over the years this has got worse and worse and from my waist down i experience ongoing charlie horses in legs and really stiffness getting up like I am walking in concrete. as my PPMS is slowly advancing my mobility is worsening. I dont have overall pain. Mine is purely nerve pain worse in left foot, i have had TM, and I started with a bad bout of ON and boy did my eye hurt(left side), The way i deal with my pain is to love my MS. Yes i look after it really well, i make sure my weight is good i eat really healthy never eat processed food, i cut down on gluten, I drink lots of water. My sugar intake is limited. Oh i dont drink alcohol or smoke.
so i am 71 now and been dealing with it since 2000 still mostly mobile. ALSO another way to deal with it is to concentrate on other things. when my pain is at its worse which is first thing (legs on fire, spasms horrendous tingling) I look for things to do or read like this youtube article. Too many MSERS in my lifetime have just focused always on the bad, but believe me if MS had not slowed me down there would have been a high chance of me having a stroke through over work and stress. Stress for me is the worse factor too for MS.
The worse thing for me was all the drugs to help the pain. They just turned me into a zombie and more prone to falling, so I quit everything, and you know what i go bed early watch some comedy fall asleep and only reason why i wake is my pain, or my bladder, but i just lay back down and ignore it all going on and sleep mostly 7 to 8 hours. I NEVER sleep in the day no way.
You know my main issues really are BLADDER and BOWEL. UGH.
OH TOTALLY AGREE with you about other conditions. I have met MSERS who have had awful pain in back and shoulder its their MS and end up with gallbladder disease, I lost a friend who had MS a long time. She started to have pain back, doctor "its your MS", over time she got worse and finally we lost her to spinal cord cancer. ITS THE DOCTORS WHO NEED TO STOP TREATING EVERYONE WITH PAIN AS IT IS YOUR MS. The are lazy and dont look outside the box. I had the HUG it was my MS no it wasnt I had a minor heart issue. STOP being lazy doctors please. If we have one autoimmune disease we are more likely to have 2.
Soooo true
U r over 70 n i am over 55...female
But i have same thoughts n feelings like u ,
I tell myself i will do the best i can everyday for myself, for my kids
(17Y;24Y)both with autoimmune conditions
My son n daughter r both my heroes
They went thto hell n back n still r surviving....🙏
My husband doesnt help much😭 but we R survivors
HE ALSO HAD AN AUTOIMMUNE CONDITION BUT WE SUPPORTED HIM
NOW HE IS MUCH BETTER
WHEREAS DOCTORS COULDN'T DIAGNOSE OUR CONDITIONS FOR YRS N IT BECAME WORSE...MY HUSBAND WAS NOT REALLY INTERESTED IN OUR CONDITIONS N WE HARDLY HAD ANY SUPPORT...
BUT I BELIEVE IN GOD 🙏
Eye opener for me, thank you so much
Absolutely fantastic video. Thank you.
in pain have told my doctor ms doctor therpy and they ignore me say its something else
Same
Same
Yea like she fuken knows i hate now it all doctors who are clueless af they just have pride in their ignorance
Same, even told me that headaches have nothing to do with MS...even though I have several brain lesions
Where he at ???...I need him in my life 🥴😩
I have suffered for many years with MS diagnosed at Cedars in Los Angeles...I do have lesion sat T4...I have been fortunate to remain in remitting-relapsing...lately I am experiencing what I describe as a radiating pain..constantly...seemingly from that T4 area of my spine..while in the midst of terrible chronic stress...but just wondering if this pain is real....I also am experiencing other spinal problems in the L4/5 area bulging dis s..etc..just constant pain...consequently my life is at a stand still...and depression..any thoughts would be greatly appreciated...
Tisha Zachary hi ive got a bulging disc we’re you have has it called for you to have ms
I have MS 30 years pain in my back for the last five years it has been I’m bearable I was wondering if you can tell me where I can have an appointment with you and see if you can help me thank you
as do i have the shock on my spine all the way to the bottom and it radiate to my legs is so stressfull my writing has gone bad to 😔 your not alone lets fight this thing
I have MS for 18 years but I have just been told that I may have lupus and fibromyalgia. Can I really have all 3??? I also have DDD which I needed to have back surgery for because of the pain I was having but I still have a lot pain but it's better then it was. Can someone really have all these different diseases and I also have high blood pressure, high cholesterol and early glaucoma & carpal tunnel. I get a lot of headaches too. What can you tell me Can someone have all these different diseases or have you ever seen someone like me before????. I got sick with MS when I 20. I'm lucky that I have RRMS type 1 and I don't have yet all the complications with my MS. Please Help 🙏
yes you can. MS is an autoimmune disease so is lupus. As to FMS they dont really know what is causing that but it can be linked with autoimmune diseases. I have been checked for Lupus.
I'm on your team too!!
Where I get in touch with him? I have fibromyalgia and migraine but my neurologist is asking me to have MRI. She thinks that I also have MS. I’m from Philippines.
Going through this exact thing. I have fibro and chronic migraines and y neurologist thinks I may have MS, especially since my mom and aunt were diagnosed with MS so I am going through a series of tests. Best of luck to you!
I would say go for MRI, what harm can it do. It wont show up FMS but I beleive it can show up migraine so why not? I hope you got sorted out. x
Wish this Doctor reads this because I was suffering pain all over my body and head. For years it was so bad I was losing my ability to function. I also got Botox still in pain. I tried everything in the book for this pain. The only thing that worked was methadone on 30.mg it works wonders. Best thing about the methadone I don't an increase. I really had to fight myself for years because I never wanted to be on this medication. Doctor had proscribed it before with no luck. I would not drink it as planed or proscribed until I had to realize would I continue to suffer or live pain free. Today I drink my meds and I'm fine. Don't need an increase thanks to Botox and methadone.
Be aware if you must go off it is a monster. I think you should try morphine etc. if you must wean off it is so much easier. I love feeling better with a small does like you have. But I had to go back to my pan management and due to people who abuse doctors and sell pain meds causing stricter rules and WOW it's an awful feeling. Just be aware is al. Feel better and God bless
Who is this dr?
So ca you discuss the relationship between mgus and ms? Would spinal fluid read differently than bone marrow biopsy?
I'm one of those complicated patients.
Oh my gosh ive been trying to figure out my chronic pain sense i was 12 and ive gotten hundreds of blood tests…. And this feels exactlylike whats going on. Im on duloxotine and amnatryptaline and it helps but not alot oh my god.
I would look into fibromyalgia and myofascial pain syndrome. Best of luck to you.
I always have heavy weight and pain on my back and I'm sick of it
I am writing for my sister with Ms right now she is in a wheelchair and she shakes uncontrollable, can't feed or do anything for herself. What I want to know with the right med will her be able to walk or stop shake again? From Trinidad.
That's tough. Hope she gets more help!
I am so sorry to read that about your sister. How long has she had MS, THE less you use your muscles the more your likely to tremor. Can she not go back to her care provider and ask them for help and advise?
I have Epilepsy, myofacial pain syndrom, migraines, vertigo and fibromyalgia. So guess what those meds make my seizures worse. Then, I had a bleeding ulcer and perforated Colon from other meds. Quality of life isn't very good. I can barely walk at 51 years old.
Future of pain. Sucks, really bad. Feeling of stabbed in the thigh. Bad always. Till the end.
I have chronic pain/spasticity in my right groin from MS, it sucks