Living With Multiple Sclerosis: My Experience in Day-to-Day Life
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- เผยแพร่เมื่อ 27 พ.ค. 2023
- After 10 years of living with Multiple Sclerosis, here are the symptoms that I am left with today caused by various relapses over the years. I started following a disease modifying treatment from day and I believe that this is what has prevented more relapses from causing further damage.
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What is Multiple Sclerosis ❓
Multiple sclerosis (MS) is a potentially disabling disease of the brain and spinal cord (central nervous system). In MS, the immune system attacks the protective sheath (myelin) that covers nerve fibers and causes communication problems between your brain and the rest of your body. Eventually, the disease can cause permanent damage or deterioration of the nerves. Signs and symptoms of MS vary widely and depend on the amount of nerve damage and which nerves are affected. Some people with severe MS may lose the ability to walk independently or at all, while others may experience long periods of remission without any new symptoms. There's no cure for multiple sclerosis. However, treatments can help speed recovery from attacks, modify the course of the disease, and manage symptoms.
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⚠️ DISCLAIMER:
My channel is in no way supposed to provide medical advice or guidance and I do not claim any medical knowledge of Multiple Sclerosis. I merely discuss MS-related topics from a patient's point of view. If you have a serious medical condition, please consult your medical practitioner immediately. By using this channel you do so at your own risk. "Life of Seb" TH-cam channel accepts no liability in part or in full for any damages or injury caused by the use of any content provided.
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I’m turning 29 soon and have been in chronic pain since I was 17. I feel like it’s stolen my youth and it’s so hard and depressing for me to see young people and people my age living pain free and having so much fun. I get jealous
At the same time my pain has also taught me a lot of discipline and has helped me learn what I want out of life, and so far I am still able to do most things myself and am thankfully able to be 100% independent despite my pain. If not then idk what I would do since healthcare is pretty much nonexistent in the US unless you’re extremely rich. I’m terrified to get old in this country. I plan on retiring somewhere else.
That’s so sad… I know that healthcare in the US is not doing us MS patients any favours, but please take it one day at a time and don’t let the stress get to you 🙏🏻🧡
Seb, thank you for speaking so openly about your symptoms. The evenings are always far worse for me in terms of pain.
😞🧡
I am 58 and Dx when I was 40. Recent research suggests that your age actually matters more than years since Dx but I think it is some strange combination of them. For the first 10 years I had maybe 6 attacks of a level that impacted me and had the intense Sol Medrol 4 or 5 times. MS didn't really affect me much until it shifted into SPMS and now 8 years into that there is more impact, physically and possibly cognitively. I will have another full neuropsych eval in August. Physically my main issue is "drop foot" on the right- or so it was defined as. It altered my gait enough, subtly, that I ended up trashing my labrum and ha surgery to repair it- which failed- and then a full hip replacement 6 years ago. I have never been quite right after it. Therefore on uneven ground or when going far I carry a trekking pole to catch myself as I list to the righ. I found a new PT that has more neurological training and she correctly determined that my main issue is calf spasticity on the right and I now receive botox shots into the calf and into the back of my thigh (100 units every 3 months). This has helped. I've started to walk on the treadmill 10 min a day (at 2.7 MPH) and push myself further working on the swing phase of walking, then on to one legged balance and weight shifting. I just got back from a 2 week vacation to Scotland and it was great to do as much as I did...but am still recovering ;-) I am also on Ocrevus and trying to do all the right things ;-) I love your messages and inspiration.
Wow Laura, that is such an inspiring story! Thank you so much for sharing and keep walking on the treadmill!! It can only do you good 🤗🧡
0z
Thank You!! So much of what you said is the same thing that is happening to me among others. I was diagnosed almost 2 years ago. After fighting for almost 10 years and being told it's in my head (well yes, yes it it, just not the way they were thinking). I had been dismissed without tests over and over. Sent to therapy over and over until I found my Neuro and a Good Therapist. They worked hard to push for the tests and found it. I felt validated.
Thank you for sharing your daily experiences. Mine can be different depending on my sleep. Sometimes they come out of nowhere. Fatigue is a big problem even if i had a good night's sleep. Im exhausted waking up. Overall weakness in my whole body especially in hot weather. Vertigo bending down or back too far, movement on tvs or traveling in a car nausea is pretty bad. And a foot fall out of nowhere. No warning it just will happen. Im very forgetful and congitive impairment out of nowhere. Speech issues out of nowhere and Migraine headaches that are awful. That seems like a lot but they dont happen all at once all the time. I can walk and dont have a cane or walker yet. Ive known about my disease for 6 years but ive had it since my 20s. Im now 50s. It went untreated for most of my life i had no clue. Im grateful that i dont have more disability. I take everyday one day at a time and every symtom as it comes. I am grateful for the function i have. It could be much worse for me. I just recently discovered Indica gummies which help on really bad days. I only took very little twice and results were i felt tired at 1st then no pain. I had a major Migraine and it took the pain away. My entire body felt better. It was weird because i didnt realize how much pain i was in until it was gone. Im assuming that it is body inflammation thats why my whole body felt better. Maybe this will help. God bless you. Peace.😇😊🤗
Thank you for sharing your symptoms with us 🤗🧡
Don't have MS, but have some minor nerve damage after a c4/c5 spinal cord injury. Recovered well, but these symptoms are very relatable. Tremors happen in my legs when leaning on my forefoot, or in my arms when yawning i.e Slight numbness in my right upper thumb and index finger, especially in the morning. When tired some stiffness in my legs (or when not being active enough) and a bit more clumsiness when walking, although not noticeable for others apparently. Also some sensory issues (tingling feeling) in my lower body, which gets worse when tired. Other then that some bladder/bowel issues, which are impacted by stress or tiredness in general.
Thanks for sharing 🙏🏻🧡
Sounds like MS. All those issues are causes just from a cervical injury? Bizarre.
@@dermlover1 Unfortunately they are, when brought to the ER had a full medical check up (MRI+ multiple CT on my brain and neck) Basically I have encountered a hyperextension injury which caused a disc in my neck to slip and pressure the spinal cord. Was more or less a tetraplegic (Google central cord syndrome) when wheeled into the hospital, but luckily after an operation in which they replaced the disc in my neck and relieved the pressure my functionality came back. However it is likely that I have some myelopathy/lesions in a few nerve tracks, now 14 months post injury.
In general I am very grateful for my recovery so far, it could have ended way worse
So glad you opened your heart to us. This is difficult for me. However, one of the most difficult issues with me is HEAT. I live in the area of Phoenix, Arizona and the heat does a measure on me. Also, the tremors are a recent (daily) situation. I'm glad you brought this up because my Neurologist is testing me for Parkinson's disease and said that he didn't think that tremors we from MS. I believe I need to research this more. Nevertheless. Please take care of yourself.
Hey there, yes, the heat! I forgot to mention that. I hope they run all the test correctly, I wonder why your neurologist would not think the tremors are from MS? Keep us posted 🙏🏻🧡
Used to live in Scottsdale. It was hell in the heat
Yes read about parkinson
Big love to seb.
🤗🧡
Thank you for making these videos. A good friend of mine told me her son was recently diagnosed with MS. He is married and has a baby. I really didn't know anything about MS, and I appreciate your sharing information so I can understand better.
🙏🏻🧡
Neurotic pain pins and needles under my feet and now my hands is depressing. Ive had symptoms in my 20s 49yrs now try to exercise daily an take d3. Still work an 8hr job i recenly started using a cane my wife who is a nurse encouraged me but that to is depressing.I keep on going and smiling for my kids
Sorry to hear 😓🧡
I may be in early stages of MS.
Thanks for putting this up...
I need to be watching for early symptoms.
If in doubt, go see a doctor! Take care 🙏🏻🧡
@@LifeofSebMS thank you for the kind reply. MS is hard to diagnose. I've only had one attack. Might be nothing. I do not think my Dr is up to it.
It is a tricky one to diagnose unfortunately… do take good care of yourself and be very mindful of your symptoms 🙏🏻🧡
@@xpiyrw2374if one doesn’t do good for you go the next and not give up.
Hey Seb! You’ve been a great help to me since being diagnosed last summer. Tremors affect the right side of body. I was wondering, have you tried eating Lion’s Mane mushroom?? I’ve been experimenting with it this week and it truly seems to help my tremors. I just cooked some slices in a pan with olive oil and sliced onion. I ate it with chic-fil-a sauce to trick my brain into thinking it was chicken! The next day, my right hand was more solid than it’s been for the past few months. Can anyone else confirm this?? And thanks for being a voice for our community. We’re a tough bunch
Hey Dru! That is truly interesting… I’m going to have to look into it! Anything to help these tremors… thanks for the tip 🤗🧡
Hi Seb! Love your videos and hope you are well! Diagnosed myself with ms in 2017 at 42. My worse symptom with ms is i am anxious all the time. Makes my symptoms worse. Do you experience this at all? Greetings from Ireland!
Diagnosed yourself? How does that work…
@@dermlover1 No I didn't diagnose myself. I was diagnosed in 2017. Though I kinda of diagnosed myself when I went into the a&e with optic neuritis. My dad had ms so I knew quite a lot about it. So my suspicions were confirmed that I had ms.
Hi! I do notice that I get unusually anxious sometimes and I don’t know if it is caused by MS 🤷🏼 although I have noticed more MSers complaining about that too! 🙏🏻🧡
Hey Seb, thanks so much for sharing, you are an encouragement to all of us with MS. I was diagnosed two years ago but symptoms were there 5 years ago. It’s good to know others are doing well with long term treatments.
Thank you for your kind words 🤗🧡
I live in southwest Germany where it gets easily 35 degrees and more in the summer. I cannot bear the heat with MS, I wonder how difficult this must be for you in Spain 🇪🇸?
Oh wow, I feel you! It gets too hot here and it’s not pleasant for me… how do you cope? 🙏🏻🧡
@@LifeofSebMS I don’t! We have outdoor blinds on the windows and I open the windows at night. I just can’t cope all summer. Even a hot shower exhausts me and I have to lie down to recover. I just thought it must be so much worse where you are.
I had tremors of both hands at the beginning of my ms travel - 2016
Today I have mostly problems with my brain. I forget everything. I don't read books anymore 😭. My concentration is very low
So sorry to hear brother!! Try audiobooks - I have also had to transition to those 🙏🏻🧡
@@LifeofSebMS
I like books, so there is no other way
Neck and lower backspasms/tightening when im tired. Eye twitches as well.
When i was first diagnosed there was numbness and tingling but it has subsided. Instead i now feel a twitch similar to eyes in my legs sometimes.
It’s an every changing condition… 🙏🏻🧡
Thanks for being hinest! So, my husband has a rare form of MS, but thankfully it has not progressed and his medication (Aubagio) is working! He lives with tremors, luckily controlled by medication, fatigue and sharp pains here and there.😢 Main problem is the fatigue...Any advice?
Hey Tamara! Sorry about your husband. For fatigue I can’t think of a single remedy, but it’s more of a whole healthy approach on a daily basis. Healthy nutrition, healthy sleep patterns, daily gentle exercise… let me know if this helps! 🙏🏻🧡
I have been dx with since 2019 but noticeable issues 5 or so years before that. I have chronic fatigue, brain fog, tremors as well but luckily it's in my left not my right since I am right-handed. My left leg is sustainably weaker. My right is what gets me through the day. As it gets later in the day I do have trouble getting around, clumbsy, legs feel like lead and heat from the sun doesn't help. I do walk without a cane but should carry one for later in the day. My eyes do have trouble with finer work like using a ruler to draw a line I have to close my left eye so when I go to draw the line it will be in the correct area.
Thanks for sharing 🙏🏻🧡
You are doing well. What are your hobbies?
Hey Sophia, my hobby is yoga for sure!! 🙏🏻🧡
@@LifeofSebMS 👍
Anyone on here been have MS with very low lesion count and lumbar puncture negative? I have an “event” you can call it and my brain scan has one small 3mm spot. 6 months later no changes. Lumbar puncture negative, but symptoms galore. Hands fall asleep on an off all day but much worse at night. Finger tremors and overall shaky feeling. Pins and needles in feet and toes go numb sometimes. Heat, stress, exercise makes it worse. I barely sleep at night due to pins and needling in hands. Neurologist called it CIS, but says he can’t even be sure it’s even that. My symptoms at their worst were extreme tingling especially in my legs that felt like I was walking on electrical wire. It lasted about a week or two and slowly improved but never fully resolved. All labs were normal. All other imaging was normal. Only thing was slightly positive ANA of 1:160. It’s been 6 months since first event and continued symptoms and no answers.
Try some compression gloves for your hand problem. They allow me to have a good nights sleep.
Did the doctor recommend something for your CIS? 🙏🏻🧡
@@LifeofSebMS He didn’t. I saw two neurologists. Both said wait and see which is scary.
@@MatidaJane how would compression help? I feel like that would make my hands fall asleep more…
I don’t know Girly but doesn’t cost much and it just might. I have carpal tunnel and it does work for me. I spent all my nights dangling my hand out of the bed and turning and twisting all,night. Not any more.
You’re drop dead gorgeous 🙂
Wow thank you so much ☺️🧡
I've got central apnea ffs..horrible disease ms
Hey Seb, thank you for sharing your journey. Have you heard of Dr. Joe dispenza? I have been watching testimonials of people who has MS and other health ssues. I highly recommend maybe looking into it!
Thanks for the tip 🙏🏻🧡
@@LifeofSebMSI don’t have MS but I have addisons disease and peripheral neuropathy in my hands and other minor things.
@@LifeofSebMSddison is definitely a hard-disease to live with. I thought I had Ms of the symptoms but I don’t from my MRI of my brain and back.
Thanks for sharing 🙏🏻🧡
Hello Seb,
I am 37 years of age, I know MARRIAGE is out of question, since I am suffering from MS.
But can you please let know, if Marriage is "NO WAY", only due to this issue of life?
whats your story about marriage??
please let know,
thanking you,
Roshan
Seb do you have help or you live alone? Sending you big hug❤
I have very loving people around me, thankfully 🥰🧡
Anyone on Coimbra protocol?
I can not lick my lips like my tongue won't come out all the way.last few days
😞🧡
Do you know where and how many lesions you have? That makes a big difference in how you react. I went back to a drug called Tecfedria. I had been on this drug before and had great results but it was a circus every month to get the approval and to many times the insurance company dropped the ball and I had to cold Turkey the drug. This was so hard on my body and I finally got enough and stopped the medication. I was off it for 2 years and as covid19 started I lost the approval for Ocrevas! I was having so much trouble with my symptoms that I finally asked my Neurologist to go back on Tecfedria and she got a year’s approval… I’ve got 5 months left but I’ve not had to fight every month for a renewal. I was having so much problems prior to going back on Tecfedria but once I restarted the medication I’ve been so much better. I don’t know how healthcare works in Spain but it sounds like you need to go to a different drug. Tecfedria is in pill form! No shots!!!! Good Luck Seb…. Blessings
What an unnecessary stress that the insurance system makes it so complicated… the system here is very good and they really take care of you. And I’m super happy on Ocrevus! I might have to change in the future, but for now I’m very happy on it 🤗🧡
Its always better than Amyotrophic lateral sclerosis...
For sure… ALS is truly tragic and it makes me cry when I hear of someone who has been diagnosed with it… 😞🧡
I love how you adapt and carry on Seb! Slower speeds on the mouse, bringing your cane, resting, and being gentle with your vision.
My persistent symptoms are sensation loss on the left side, mostly in my hand and foot. A bit of weakness. Some fatigue. And recurring spasms.
Other symptoms that can flare with heat, intense workouts, lack of sleep, or stress are tightness, pins and needles and pain in my left leg and foot. I can also experience fatigue with these and cog fog.
Occasionally when I am really over heated my left leg will get heavy and react slower.
All in all my symptoms are manageable and I carry on!
Thankyou for being an uplifting and honest soul n my life ❤🩹
🤗🧡
Thank you for sharing Seb. This helps many understand what it means to live with MS. 🫂 I am here with and for you whenever I can support with anything
Thank you for your support, Ahmad! 🤗🧡