No too many people know. The only reason I don’t tell people as it’s hard for me to answer their questions and I still get a little choked up talking about it. Also, I don’t like hearing all the medical advice from non-doctors, like “you should just exercise and eat better”, which for sure plays a MAJOR part, but mentally for me, it’s a monster to deal with. I should talk about it more with people but I feel no one really gets it unless they get it.
Its so true, if they don't have to deal with it they don't understand. I get that, I struggle with the same thing. So then I'm just quiet about it a lot.
I was diagnosed with MS 2 months ago, and it was a pain in the arse to figure out what i had, i only had two flares, one was last year, that one basicly i woul have a spasm in my whole body in one side only, but i couldn't do mutch about it, it was like, literally every 2 to 5 minutes i would have a spasm in my body in one side for like 5 to 10 seconds. I was checked several times, did a bunch exams to everything, and well, everything was good and no one knew what i had, fast forward 1 month of half body spasms every 2 to 5 minutes and one day, i woke u and everything was fine. Just like that i had nothing. 1 year later i felt like the spasm were about to come back (I could feel them coming) and i was taking my driver's license, so i stopped my lessons and yeah, surely, they came back, full body spasms again, but on the other side of the body, i went to the emergency again but this time, after checking a bunch of stuff and everything was fine, one doctor asked for a MRI scan, and i went and did it, when i came back from it i heard another doctor saying maybe it would be better to do a lombar puncture to be sure and i turned around and was like "well, if you wanna do it right now go ahead since i'm feeling good at the moment." well, little did i know what that was, anyway, i find the MRI worst, although that was very painfull, anyway, i took corticosteroid for like 5 or 6 days, but man, this year was way worst then the year before, i couldn't do anything, could barely get up, i couldn't eat by myself, my speech failed me every couple minutes, i got EXTREMELY tired all the time, i couldn't even take a shower by myself, i could not do anything alone, had to ask my lovely wife to cut my food, my hand coordination was terrible, i wouldn't be able to type all this like i am doing, could not type on my phone, sometimes i was swallowing and i felt like, my tongue would push the food downwards but it was just stuck there because my muscles did not work, sometimes i wanted to get up but my legs didn't work, again, my leg muscles just did not work, i got fecal urgency, i got a slight urinary incontinency, it was just terrible, absolutly terrible, when i heat up a bit my vision got blurry and the spasm would come back with the speech problem, i had psychosis, i heard and saw stuff that was not there, not happening, again, just terrible i am almost back to 100% again, but i realised that the vision in my right eye is bad, i think this will be permanent, but we will see how it goes, and honestly alot more, i have so many symptons i could actually make a pretty considerable size list of them. I am 30 years old by the way, and apparently this is a bit unusual, specially for my age. So yeah, just found out about this, apparently i have a pretty active case of MS, i am already on Ocrelizumab and yeah, i guess we will see how it goes, currently watching videos and learning about MS so, thank you.
I have gone through lot of the things you mention here. Luckily I was already married with 3 kids when I was diagnosed or I don't know if I would have had all of them. The unknown is scary, but ignorance truly is bliss! My dad tells me the reason I'm so tired all the time is because I don't do any hard work to tire myself out and get a good night's sleep. My aunt tells me I could do this job, that job, she has lots of job ideas for me. If it wasn't for MS, I'd be a high school English teacher, something I worked my butt off getting twenty years after graduating HS, but my first symptoms showed up while student teaching, and I wasn't diagnosed for 1.5 years later. Another relative told me I needed to use my brain more because the brain is a muscle. When I told her, no... She insisted it was. Unfortunately my brain muscle has too many lesions to work properly because I don't do enough hard work, I guess! Sorry to vent. Thanks for sharing your experiences. Ive been taking Rebif injections 3x weekly and have had no new symptoms or changes on MRI for 8 years, but still have vertigo, balance issues, cognitive issues, extreme fatigue, etc, etc. 😇
I have similar symptoms taking rebif My husband wants to leave me No support except for my 2 kids n their narcissist father gets jealous if they help me😢
I'm so sorry you are dealing with this! Have you tried counseling? I'm thankful for my supportive husband, but MS has definitely strained our relationship. I have faith in God to help me through. 😘
Thank you for posting! I have a hard time with taking a shower especially if I have to wash my hair. It totally wipes me out. I only do makeup now then I go somewhere which doesn’t happen very much. I used to be so active, totally into bodybuilding, on my feet all day and enjoying it.
Thank you for posting your videos and giving others who don't have multiple sclerosis a little understanding of this disease. I was diagnosed December 2022
Thank you for this. They just found I have lesions in my spinal column and have suspected ms for years. I’m about to have a spinal tap, I am scared about that pain but ready to find out for certain and move on down the road. I appreciate your video and you.
I don't know how i came upon your channel, but im glad. I know this video is 3 years old, but im wondering how you are now. I hope you are well! Thank you for sharing
I am so sorry, you and I have so much in common. I used to Roller Skate and I was the best Skater in the United States and I have proof of that on a DVD I as well was a Cosmetologist.
It’s such a hard change, adapting to this new way of life. I’m so sorry to hear that for you too. How are you? I haven’t made a video in a while and maybe today is the day. I have been feeling better with the meds but going through crazy mental/emotional up and downs more then before. I reached out to my neurologist to see if that’s normal. Other then maybe it’s just the wholes in my brain that have been damaged causing me to feel crazy. Idk
Oh yeah, another great UA-camr is Damian Washington, his channel is now called No Stress MS. He has videos going all the way back to his first Ocrevus infusion. His videos really give a full view of the infusion process.
Than you!! I will definitely check him out. I plan on doing a live or something day of infusion too just so people see the process and maybe help understand what we deal with.
No too many people know. The only reason I don’t tell people as it’s hard for me to answer their questions and I still get a little choked up talking about it. Also, I don’t like hearing all the medical advice from non-doctors, like “you should just exercise and eat better”, which for sure plays a MAJOR part, but mentally for me, it’s a monster to deal with. I should talk about it more with people but I feel no one really gets it unless they get it.
Its so true, if they don't have to deal with it they don't understand. I get that, I struggle with the same thing. So then I'm just quiet about it a lot.
I was diagnosed with MS 2 months ago, and it was a pain in the arse to figure out what i had, i only had two flares, one was last year, that one basicly i woul have a spasm in my whole body in one side only, but i couldn't do mutch about it, it was like, literally every 2 to 5 minutes i would have a spasm in my body in one side for like 5 to 10 seconds.
I was checked several times, did a bunch exams to everything, and well, everything was good and no one knew what i had, fast forward 1 month of half body spasms every 2 to 5 minutes and one day, i woke u and everything was fine.
Just like that i had nothing.
1 year later i felt like the spasm were about to come back (I could feel them coming) and i was taking my driver's license, so i stopped my lessons and yeah, surely, they came back, full body spasms again, but on the other side of the body, i went to the emergency again but this time, after checking a bunch of stuff and everything was fine, one doctor asked for a MRI scan, and i went and did it, when i came back from it i heard another doctor saying maybe it would be better to do a lombar puncture to be sure and i turned around and was like "well, if you wanna do it right now go ahead since i'm feeling good at the moment." well, little did i know what that was, anyway, i find the MRI worst, although that was very painfull, anyway, i took corticosteroid for like 5 or 6 days, but man, this year was way worst then the year before, i couldn't do anything, could barely get up, i couldn't eat by myself, my speech failed me every couple minutes, i got EXTREMELY tired all the time, i couldn't even take a shower by myself, i could not do anything alone, had to ask my lovely wife to cut my food, my hand coordination was terrible, i wouldn't be able to type all this like i am doing, could not type on my phone, sometimes i was swallowing and i felt like, my tongue would push the food downwards but it was just stuck there because my muscles did not work, sometimes i wanted to get up but my legs didn't work, again, my leg muscles just did not work, i got fecal urgency, i got a slight urinary incontinency, it was just terrible, absolutly terrible, when i heat up a bit my vision got blurry and the spasm would come back with the speech problem, i had psychosis, i heard and saw stuff that was not there, not happening, again, just terrible i am almost back to 100% again, but i realised that the vision in my right eye is bad, i think this will be permanent, but we will see how it goes, and honestly alot more, i have so many symptons i could actually make a pretty considerable size list of them.
I am 30 years old by the way, and apparently this is a bit unusual, specially for my age.
So yeah, just found out about this, apparently i have a pretty active case of MS, i am already on Ocrelizumab and yeah, i guess we will see how it goes, currently watching videos and learning about MS so, thank you.
I have gone through lot of the things you mention here. Luckily I was already married with 3 kids when I was diagnosed or I don't know if I would have had all of them. The unknown is scary, but ignorance truly is bliss!
My dad tells me the reason I'm so tired all the time is because I don't do any hard work to tire myself out and get a good night's sleep. My aunt tells me I could do this job, that job, she has lots of job ideas for me. If it wasn't for MS, I'd be a high school English teacher, something I worked my butt off getting twenty years after graduating HS, but my first symptoms showed up while student teaching, and I wasn't diagnosed for 1.5 years later.
Another relative told me I needed to use my brain more because the brain is a muscle. When I told her, no... She insisted it was. Unfortunately my brain muscle has too many lesions to work properly because I don't do enough hard work, I guess!
Sorry to vent. Thanks for sharing your experiences. Ive been taking Rebif injections 3x weekly and have had no new symptoms or changes on MRI for 8 years, but still have vertigo, balance issues, cognitive issues, extreme fatigue, etc, etc. 😇
I have similar symptoms taking rebif
My husband wants to leave me
No support except for my 2 kids n their narcissist father gets jealous if they help me😢
I'm so sorry you are dealing with this! Have you tried counseling? I'm thankful for my supportive husband, but MS has definitely strained our relationship. I have faith in God to help me through. 😘
Thank you for posting! I have a hard time with taking a shower especially if I have to wash my hair. It totally wipes me out. I only do makeup now then I go somewhere which doesn’t happen very much. I used to be so active, totally into bodybuilding, on my feet all day and enjoying it.
Hell yes.... speak it.... amen this video hit home so much thank you
🙌🏻🙌🏻❤️
Thank you for posting your videos and giving others who don't have multiple sclerosis a little understanding of this disease. I was diagnosed December 2022
Yes it is exhausting having to explain all the details again and again
Thank you for this. They just found I have lesions in my spinal column and have suspected ms for years. I’m about to have a spinal tap, I am scared about that pain but ready to find out for certain and move on down the road. I appreciate your video and you.
Every little weird feeling puts me on edge as I start to worry about if something’s about to happen.
LITERALLY!!! Omg yes, if I feel anything out of the norm..which what is normal anyway. I start to panic a bit
same
I don't know how i came upon your channel, but im glad. I know this video is 3 years old, but im wondering how you are now. I hope you are well! Thank you for sharing
Thank you for your videos. Best from Franziska from Germany
Not everyone who has ms has someone to fall back on. Once your sick it seems people slowly disappear
I've had it for 16 years my I told all my friends and family that I had it
I do want ask, the more ocrevus infusions you have? Do you feel better? I'm on ocrevus as well
I am so sorry, you and I have so much in common. I used to Roller Skate and I was the best Skater in the United States and I have proof of that on a DVD I as well was a Cosmetologist.
It’s such a hard change, adapting to this new way of life. I’m so sorry to hear that for you too. How are you? I haven’t made a video in a while and maybe today is the day. I have been feeling better with the meds but going through crazy mental/emotional up and downs more then before. I reached out to my neurologist to see if that’s normal. Other then maybe it’s just the wholes in my brain that have been damaged causing me to feel crazy. Idk
Just confirmed yesterday that I have ms. I’m not for sure if I want to tell anyone yet.
Well said
Where are you now friend? I have RRMS and just found you! I pray you’re ok!
Hi! I’m back!
Thank you!
Oh yeah, another great UA-camr is Damian Washington, his channel is now called No Stress MS. He has videos going all the way back to his first Ocrevus infusion. His videos really give a full view of the infusion process.
Than you!! I will definitely check him out. I plan on doing a live or something day of infusion too just so people see the process and maybe help understand what we deal with.