I was Diagnosed in 2020 after having numbness on the right side of my body! I had the spinal-tap done and they had a hard time extracting the fluid and I was stuck 5 times and was bed ridden for 3-days and my spine has never been the same! I have lesions on my spine and my brain .. I have heat and hot weather issues , severe numbness in my right leg and severe cramping and pain in my hands , Blurred vision and headaches and anxiety.. I am currently taking Ocervus 6-hour infusions twice a year for my treatment .. Stay strong Sara! We are MS Warriors!! May God Bless You .. I was an athlete my whole life and this has been the hardest thing I've ever been thru! MS has really humbled me .. I gave myself 1-day to feel sorry for myself then began to fight! I will not let MS beat me ..
Thank you so much!! I am so sorry to hear about your spinal tap. How is the Ocrevus for you? Have you been handling it well and feel it is working? I really appreciate your comments and wish you well ❤️
I was diagnosed in 2015 and am living with it since then. I too have started with a channel talking about MS and educating people. I guess we should follow each other more keeping in touch! Take care ❤
I am currently in the process of getting a diagnosis. It was your videos that gave me that push to stop suffering alone and get help. I appreciate the work you do, and I appreciate you ❤ I wish you and your family all the very best for the future ❤
Thank you for sharing your journey with this and your other issues. How have you been able to maintain your career/a simple job to help keep the mind occupied/pay the bills? I have Fibro and looking for MS tests as I have now the black dot in my eye and a plethora of symptoms that are debilitating. Looking forward to more videos! Also, how does this affect your relationships with others and yourself? For me it’s taking a toll.
I lose fronds all the time. Just too tired and don’t know if I can commit. Never know how much energy or other things I’ll have. I don’t know if this is MS, but it’s chronic and I have so little time for anythjng but surviving these days
I am currently fighting with my doctors to take me seriously. I am in the UK and the NHS is under extreme pressure right now and I believe I have had a MS relapse. I have had symptoms since I was 22 and I am 30 now. They told me it was sciatica then but now they wont even listen to me or book me an appointment. I have been struggling really badly after a cold for the last 2 weeks with a trip to the ER. I completly lost feeling in my left leg that travelled up to my thigh then hip. It has gone down now. My head wobbles, my right eye has been twitching for over 3 weeks and my neck/shoulder and back are hurting me. I keep on get numbness and pins and needles in my right shoulder. I got double vision in my right eye and weakness in my right arm. I also have the awful itchy head, neck and back that also burns. My left leg burns when I walk and so do my hips, the other week I almost collapsed whilst rushing to pick my son up from preschool. My symptoms are dying down now and I still havent been able to get a doctors appointment. Im so scared Im going to have a really bad relapse and not be able to go back to normal by the time they actually decide to see me. They just keep saying it's all because im overweight. (I have PCOS and hypothyroidism so losing weight is super tricky for me) I sleep minimum 10 hours a night and still have to nap during the day. I feel like im losing me mind and no one believes me other than my partner who is my biggest support ❤
oh wow, you defiantly need help, Im new to ms, un dignoseed for over 10 yrs This is no good. the quicker one is treated the more disability can be postponed Good luck to you 😊
I was diagnosed with multiple sclerosis in 2008 at age 32 I've been dealing with ms for 16 years now im 48 ive had weaknesses in the left leg fatigue blurry vision short term memory loss bladder bowels cold weather and warm weather
Hello Sara, I guess when we all sit down and think back to long before our MS diagnosis, there were signs a plenty. I remember when I just turned 20, out of the blue, my body would shake violently as if an electric shock was passing through me. It lasted for several weeks and I haven't experienced it since. Like you, I was tripping going up and down stairs and generally when out and about; my left side is weak. I also had bladder problems resulting in some embarrassing accidents. This all happened prior to my optic neuritis which manifested itself as a black dot in my right eye but it didn't go away like yours but got larger and is permanent. Going to the doctor and then to hospital for tests and a finally an MS diagnosis was both terrifying and empowering at the same time. That element of feeling paranoid that something wasn't right was dispelled but it does come back, from time to time as vague feelings or sensations send thoughts to question if MS is lurking in the shadows wearing a mask of yet another symptom. Heat and tiredness are what makes my MS worse but the winter months are not kind either as walking in snow or icy conditions is a nightmare with balance and weaknesses issues! If I may say Sara, you have grown in confidence as this channel has grown. You speak with such clarity and warmth which in itself is so often missing when one gazes across the unforgiving landscape of MS... ♥️
Thank you so much for the support!! Yes I think there are a lot of signs that we do not even realize. I am sorry your optic neuritis didn't go away, I wish they could fix the symptoms that don't go away like your eye and my leg, so annoying!
I was told I have Fibromyalgia. Maybe I do. But i have feelings of maybe a almost cramping or feels like cold water or a vibration type feeling running through my legs. It has helped taking vitamins but it always comes and goes. I think I will start the journey for pain. I have so many crazy things going on I forget or push back feelings and seem to forget them until they come back again.
Where you diagnosed with Fibromyalgia? My Rheumatologist suspects that's what I have after doing blood and urine tests and that nerve test. All came out fine. My symptoms do align with both MS and fibro and I have nerve itches randomly. Maybe I'll ask to be tested for MS if I remember when I see my Rheumatologist 😂
I went into the ER in 2012 and had numbing and weakness on my right side. They did an MRI and said right away I have MS. I have sought treatment on and off. The last treatment I got sent me into seizures. I really need a good doctor now do take care of this and also for general health.
I went to the Eye Dr in April. I failed the test where it is a circle and 7 or different numbers is inside of it. The Eye Dr came to the conclusion from that and looking at my eye that I might have MS. He told me I should get screened for MS. I thought he was crazy. In late July though. I began feeling itchy almost all the time. Sometimes it's an itch. Sometimes it burns and feels like a sunburn. Sometimes it feels like I rolled around in fiberglass. Getting close to 2 months of this. Sometimes my eye or eyes even burn. The itch and burning feelings are over. Sometimes I feel numb in different spots. Sometimes I have something with my chest and breathing that is hard to describe. Don't know if it is that MS Hug or not. I just started a new job around the time all this started so I do not have insurance yet. I'm also not excited about hearing from people it can take years to be diagnosed.
My legs used to do this weird lock up thing if I walked outside when it’s cold; half of my body basically went numb and weak almost paralyzed like I guess? I started Ocrevus infusions this year; now I get head fohs mostly. I always tell myself this doesn’t define me this isn’t me and it will not take over me so same goes for all of us fellow MS diagnosed.
Spinal taps are the absolute worst, I don’t ever want another one. They first tried to do mine on the day ward in just a standard appointment, and after trying a bunch of times they had to give up because it wasn’t safe to give me any more local anaesthetic. They then sent me an appointment to get it done guided by Neuro surgery, so I had it done in a surgical suite. I thought the needle was in because it had been very painful, but then the surgeon said they needed to get through the muscle. It was so painful I felt like I literally glitched out of reality, like I was just moving across an ocean. The surgical team all started asking me if I was okay, could I say something or blink or squeeze the nurse’s hand to let them know I was still okay, so I guess that was a little unexpected or my readings suddenly went crazy or something. HOWEVER, I know a lot of people who have said it was super easy, straightforward and minimally painful, and it seems to just depend on your anatomy 🤷♀️ I think because I’m only 4ft 11, everything is kind of squished together and there isn’t a clear gap for the needle to pass through. I didn’t get any after effects like some people do; my back hurt where I was stabbed in the spine (fair enough) but I didn’t have a headache or fluid leakage or anything. I had coffee and red bull and salted nuts and stuff, as advised, so maybe that helped. Even if I needed another one for something, I wouldn’t do it. MRIs on the other hand, I love lol. I don’t spend much time during the day sat down, and just being able to lay there and do nothing, it’s awesome 😂 I would recommend closing your eyes though - I would definitely get claustrophobic if I didn’t! One time they also put me in the kids’ MRI just because that happened to be the one they had free. If you’re claustrophobic, try asking if they can do that for you! It was amazing. It doesn’t cover as much of you, you don’t need to take your clothes off and get into a gown, and they can either play movies into the MRI using some sort of mirror system, or they have a colourful light show thing which is meant to entertain babies but is also relaxing for grown ups!
Hello,Sara Nice to meet you New Subscriber here from Amman Jordan 🇯🇴 The Middle East Thanks for sharing your story and all the interesting information Warm Hugs 🤗
Youre not silly. (EVER) Youre a Trooper & an Angel for sharing knowledge while Going through all this. You give validation to many anonymous sufferers. Thanks. I get Myoclonic Seizures caused by Heat. I only learned recently that Random HICCUPS are part of this type of Seizure Activity. Its a TELL for me when I get Hiccups. That I'm not in good shape.
Similar to you a symptom a few years before my Dx was tripping when running up stairs at work and had an issue lifting that leg up and out of the car. I went to a sports Dr and it was attributed to the aggressive leg lifts done during a kick-boxing exercise class. Then a blind spot (kidney shaped and pixelated) in my 2nd trimester that faded in my 3rd. This one was noted "possibly ON" and I should have followed up on it after birth but I was busy working and mothering and after all the issue went away- probably just weird pregnancy hormones I thought. When my daughter was 3 1/2 one foot was sticking out funny when I got up but we were off to a park to see the fall colors and I just kept going. No pain. I was referred directly to a MS Neurologist at the U of MN who quickly Dx me back in 2005. My blind spot was also reviewed there so all the records were available. For me the cold is way worse than the heat but in WI I get more cold than heat ;-0 It ties into my spasticity which is really one of my worst symptoms although I didn't realize it for a long time. It was behind my gait issues/circumducting resulting in a hip replacement over time. I now get botox shots into my calf and that helps my toes lift better so I don't catch them and trip.
Your early symptoms are a lot like mine. I wish they would be better at diagnosing. I never even thought it was MS, I was completely shocked and confused when I was diagnosed. I often wonder and I know I shouldn’t, but how much better off I would be if I was diagnosed earlier. I am realizing this summer that I am sensitive to too much heat now as well ☹️ it isn’t bad but still not happy about it. It’s like I need everything perfect and that just not how life is lol. I love your comments on my videos so much!! Thank you, really helps me feel like I am not alone.
I have vague weird symptoms for literally two decades and doctors think I am still in too good shape for it to be MS. So, sometimes, it's probably a neuropathy or something. My symptoms lasted from couple of days to couple of weeks and were quite sudden on onset: vertigo, dizziness, really overactive bladder (can't do without bathroom literally 2 minutes), a bit more blurred vision than usual, face twitching and twitching on other body spots, weird unexplained pains mostly in neck (real bad), also ankles, wrists, feet, back, and the one I have the longest: unexplained itching, mostly in lower legs, that got worse and worse in time and sometimes it's borderline pain (does not last long though). So it kind of can be nothing, but I don't know, it's weird.
I’ve been kinda wondering if I should talk to my doctor or not about this. I just turned 26, but for years I’ve had extreme fatigue, nearly falling asleep at my desk at work or in the car driving 15 minutes away to go home at the end of the day. I also have like zero sex drive at all. Those are two things I know are kinda common with MS. But in the last 3 years I’ve had pain in my left knee that has progressively gotten worse, my x rays show that there’s nothing wrong though. The pain comes and goes but when it’s there it can last hours or a full day and by the next it’s gone. But it does pop a lot when I bend it. But I’ve noticed a burning sensation to the skin on my knee when it hurts, I also get Charley horses a lot in my feet, I get a lot of pinched nerve feelings in my back and it gives out. I also have little twitches throughout my body where my foot or hand will twitch. Or just parts of my arm. I also have a weird thing that happens where I feel like the blood in my veins is boiling. It’s the best way I can describe it. Like sticking a straw in a milk glass and blowing and watching the milk bubble, I get a weird feeling in my legs sometimes that feels like that. I’ve had my legs and arms “fall alseep” but that’s mostly been under “normal” circumstances such as sitting too long or something so nothing too weird there, although my leg fell asleep and got tingly when I was washing dishes one time so idk 🤷🏻♀️ I do frequently urinate a lot too, the other day my bladder was full and I so I went, I’m not kidding you after 5 minutes it already felt full again and I had to desperately go. I get embarrassed at work because I go pee every 20-30 minutes
Thank you! I have never kept a symptom diary. Maybe I should. I have my brain MRI every two years, with and without contrast. It takes around 45 minutes. When you add the other parts, like the neck and thoracic spine, it gets long. I hated that. No new symptoms on my end. Have a good day!
Wow - I also struggle with cold. I often feel cold in my hands. It could be related to the location of my lesions near the hippocampus. My numb hand initially appeared to be carpal tunnel syndrome. Thx for the video.
My issues are mostly with spinal cord, so the earliest ignored symptoms were dizziness (thought nothing of it, maybe just need more sleep) and very, very slight weakness in one leg, but that was only noticeable under relatively extreme circumstances - when I tried to do squats on one leg - I was able to do them on one leg, but not the other. Maybe gut issues too, but I gut IBS (irritable bowel syndrome, perhaps caused by SIBO - small intestine bacterial overgrowth, I'll try to get tested for that), thus not sure about those.
What about seeing random flashes of light? Lately I've been seeing random flashes of blue or green for maybe a split second and I think I'm just imagining things as it goes away quickly. I get my eyes checked every year and have no concerns expressed by my doc. I've had symptoms related to MS, told my Rheumatologist and she has ruled my symptoms more aligned to Fibromyalgia. I saw a neurologist first and she referred me to a Rheumatologist after I tested ANA positive. I did that nerve test and everything came out fine just a little weakness with my left side of my body. Blood tests ruled out no autoimmune issues nor nutritional deficiencies. Should I ask to be tested for MS?
I used to get sores on my upper back and shoulders really ugly, and they would pit and get deep and have like a Puss drainage for a while & they took forever to heal up. I had went to the doctor for another problem and when he was listening to my heart, he also listened on my back and he saw the sores and he ask if I had MS I ask him why and he said oh I saw your sores do people with MS get soresI’ve had sores for years and they’re nasty ones. I do have a few of the other symptoms but the doctors always look at me and say oh you’re fine.
Did you ever experience a feeling of internal vibration when sleeping? At first I thought my dog was scratching herself at the end of the bed. This feeling has progressed from just early in the morning occasionally to every night and several times a night and not gentle vibrations now. It first started in 2019. Every doctor including Neurologist, cardiologist, primary doctor has never said anything re MS, however, my symptoms sound similar to many you describe.
Yes, i get that but I’ve not been diagnosed with MS. I have an appointment to have an MRI scan soon because of awful nerve pain and numbness on my left side.
I have weakness on my right arm and legs. I have weird sensation it’s not pain it’s like some parts of the muscle get tense and the urge to massage or pressure them😢
So... the black spot. Did it look like a bug was in your face? That's what I just recently started seeing in my right eye. I mentioned to my neuro. He is also ms specialist, but he said most likely a floater. But now the same thing happening in my left eye. And the "fuzzy bug" is just a black dot now. I don't really see a black dot anymore occasionally it will on my right. WDYT? I see my eye Dr in 2 weeks. I hope she can tell me yes it's because you getting old (😅 I'm 45) its a floater or no this is your optic neuritis. I really trust her. She was the first Dr I saw who said all your tests are normal but I am telling you I strongly feel you need an mri. I tell her everytime how grateful I am. I also have cold intolerance. It's so uncomfortable, and annoying that I spend my spoons shaving my legs to be Ms. Prickles 😂 Then once diagnosed 3 yrs ago I now have pretty severe heat intolerance which is such a challenge in AZ. The cold is not fun but at least I can function. The heat activates all your symptoms, makes you sick and turns you into putty. Basically I am pretty inactive 5 months of the year with this heat. 😢 and a cooling vest doesn't really help much with 116 degree weather going on right now. I tell my husband I'm either hot or cold. High maintenance and hard to please and nothing is ever perfect 😂😂 Thanks for your video!!!
Maybe, it is so hard to explain, but what I can say because I have had floaters too, it did not move around like a floater. Does yours move around? I am so glad to hear you have a doctor you can trust! Makes all the difference. The cold intolerance sucks right? I hate it. Yes I feel like such high maintenance too! LOL. Thank you for watching and the comments!
Another very very rare on...Brain tumour. When I was being diagnosed (in 2021) they also found an orange size brain tumour on my cerebellum. My MS Neurologist said (if I don't know what MS is as he's pointing to my brain tumour on MRI) My MS Neurologist is world renowned too and in Canada. I also get the odd vibration feeling inside, arms and legs too.
My sister is 32 years old and she has suffered from meniere disease for years and she always complains to me that I had to bought her Dr Madida herbs I saw on TH-cam and she is telling me last month that she is cured completely and don’t long have the symptoms like vertigo or dizziness, feeling of fullness in the ear or ringing, hearing loss, imbalance, motion sickness, nausea, or nystagmus🎉🎉.
![Multiple Sclerosis - Q & A [You have questions & I have answers!]](http://i.ytimg.com/vi/8_-CfOoDDSw/mqdefault.jpg)
I was Diagnosed in 2020 after having numbness on the right side of my body! I had the spinal-tap done and they had a hard time extracting the fluid and I was stuck 5 times and was bed ridden for 3-days and my spine has never been the same! I have lesions on my spine and my brain .. I have heat and hot weather issues , severe numbness in my right leg and severe cramping and pain in my hands , Blurred vision and headaches and anxiety.. I am currently taking Ocervus 6-hour infusions twice a year for my treatment .. Stay strong Sara! We are MS Warriors!! May God Bless You .. I was an athlete my whole life and this has been the hardest thing I've ever been thru! MS has really humbled me .. I gave myself 1-day to feel sorry for myself then began to fight! I will not let MS beat me ..
Thank you so much!! I am so sorry to hear about your spinal tap. How is the Ocrevus for you? Have you been handling it well and feel it is working? I really appreciate your comments and wish you well ❤️
Spinal tap is definitely worst. I was bedridden for 5 days and needed someone to help me get up from bed even. So I understand what you mean 😪
Right before I was diagnosed I had the worst cold I've ever had. Love your videos, they dont make me feel as crazy
Thank you so much for the support. I really want to get the word out there and the support for MS!! Thank you for watching!!!
I was diagnosed in 2015 and am living with it since then. I too have started with a channel talking about MS and educating people. I guess we should follow each other more keeping in touch! Take care ❤
I am currently in the process of getting a diagnosis. It was your videos that gave me that push to stop suffering alone and get help.
I appreciate the work you do, and I appreciate you ❤
I wish you and your family all the very best for the future ❤
Thank you for sharing your story❤
Thank you for sharing your journey with this and your other issues.
How have you been able to maintain your career/a simple job to help keep the mind occupied/pay the bills?
I have Fibro and looking for MS tests as I have now the black dot in my eye and a plethora of symptoms that are debilitating. Looking forward to more videos!
Also, how does this affect your relationships with others and yourself? For me it’s taking a toll.
I lose fronds all the time. Just too tired and don’t know if I can commit. Never know how much energy or other things I’ll have. I don’t know if this is MS, but it’s chronic and I have so little time for anythjng but surviving these days
I am currently fighting with my doctors to take me seriously. I am in the UK and the NHS is under extreme pressure right now and I believe I have had a MS relapse. I have had symptoms since I was 22 and I am 30 now. They told me it was sciatica then but now they wont even listen to me or book me an appointment. I have been struggling really badly after a cold for the last 2 weeks with a trip to the ER. I completly lost feeling in my left leg that travelled up to my thigh then hip. It has gone down now. My head wobbles, my right eye has been twitching for over 3 weeks and my neck/shoulder and back are hurting me. I keep on get numbness and pins and needles in my right shoulder. I got double vision in my right eye and weakness in my right arm. I also have the awful itchy head, neck and back that also burns. My left leg burns when I walk and so do my hips, the other week I almost collapsed whilst rushing to pick my son up from preschool. My symptoms are dying down now and I still havent been able to get a doctors appointment. Im so scared Im going to have a really bad relapse and not be able to go back to normal by the time they actually decide to see me. They just keep saying it's all because im overweight. (I have PCOS and hypothyroidism so losing weight is super tricky for me) I sleep minimum 10 hours a night and still have to nap during the day. I feel like im losing me mind and no one believes me other than my partner who is my biggest support ❤
oh wow, you defiantly need help, Im new to ms, un dignoseed for over 10 yrs This is no good. the quicker one is treated the more disability can be postponed Good luck to you 😊
I was diagnosed with multiple sclerosis in 2008 at age 32 I've been dealing with ms for 16 years now im 48 ive had weaknesses in the left leg fatigue blurry vision short term memory loss bladder bowels cold weather and warm weather
Hello Sara, I guess when we all sit down and think back to long before our MS diagnosis, there were signs a plenty. I remember when I just turned 20, out of the blue, my body would shake violently as if an electric shock was passing through me. It lasted for several weeks and I haven't experienced it since. Like you, I was tripping going up and down stairs and generally when out and about; my left side is weak. I also had bladder problems resulting in some embarrassing accidents. This all happened prior to my optic neuritis which manifested itself as a black dot in my right eye but it didn't go away like yours but got larger and is permanent. Going to the doctor and then to hospital for tests and a finally an MS diagnosis was both terrifying and empowering at the same time. That element of feeling paranoid that something wasn't right was dispelled but it does come back, from time to time as vague feelings or sensations send thoughts to question if MS is lurking in the shadows wearing a mask of yet another symptom. Heat and tiredness are what makes my MS worse but the winter months are not kind either as walking in snow or icy conditions is a nightmare with balance and weaknesses issues! If I may say Sara, you have grown in confidence as this channel has grown. You speak with such clarity and warmth which in itself is so often missing when one gazes across the unforgiving landscape of MS... ♥️
Thank you so much for the support!! Yes I think there are a lot of signs that we do not even realize. I am sorry your optic neuritis didn't go away, I wish they could fix the symptoms that don't go away like your eye and my leg, so annoying!
I was told I have Fibromyalgia. Maybe I do. But i have feelings of maybe a almost cramping or feels like cold water or a vibration type feeling running through my legs. It has helped taking vitamins but it always comes and goes. I think I will start the journey for pain. I have so many crazy things going on I forget or push back feelings and seem to forget them until they come back again.
Where you diagnosed with Fibromyalgia? My Rheumatologist suspects that's what I have after doing blood and urine tests and that nerve test. All came out fine. My symptoms do align with both MS and fibro and I have nerve itches randomly. Maybe I'll ask to be tested for MS if I remember when I see my Rheumatologist 😂
I went into the ER in 2012 and had numbing and weakness on my right side. They did an MRI and said right away I have MS. I have sought treatment on and off. The last treatment I got sent me into seizures. I really need a good doctor now do take care of this and also for general health.
I am so sorry to hear this. I hope you can find a better doctor!
It's hard to get a good doc these days, u aren't alone in this. Hope u do tho ❤
Yes! Cold peripheries are my most annoying MS symptom. The heat never bothers me, just the cold. Love your t-shirt!
Thank you. It’s so great to hear I am not the only one that has the cold issues!! ❤️❤️
I went to the Eye Dr in April. I failed the test where it is a circle and 7 or different numbers is inside of it. The Eye Dr came to the conclusion from that and looking at my eye that I might have MS. He told me I should get screened for MS. I thought he was crazy. In late July though. I began feeling itchy almost all the time. Sometimes it's an itch. Sometimes it burns and feels like a sunburn. Sometimes it feels like I rolled around in fiberglass. Getting close to 2 months of this. Sometimes my eye or eyes even burn. The itch and burning feelings are over. Sometimes I feel numb in different spots. Sometimes I have something with my chest and breathing that is hard to describe. Don't know if it is that MS Hug or not. I just started a new job around the time all this started so I do not have insurance yet. I'm also not excited about hearing from people it can take years to be diagnosed.
My legs used to do this weird lock up thing if I walked outside when it’s cold; half of my body basically went numb and weak almost paralyzed like I guess? I started Ocrevus infusions this year; now I get head fohs mostly. I always tell myself this doesn’t define me this isn’t me and it will not take over me so same goes for all of us fellow MS diagnosed.
Spinal taps are the absolute worst, I don’t ever want another one. They first tried to do mine on the day ward in just a standard appointment, and after trying a bunch of times they had to give up because it wasn’t safe to give me any more local anaesthetic. They then sent me an appointment to get it done guided by Neuro surgery, so I had it done in a surgical suite. I thought the needle was in because it had been very painful, but then the surgeon said they needed to get through the muscle. It was so painful I felt like I literally glitched out of reality, like I was just moving across an ocean. The surgical team all started asking me if I was okay, could I say something or blink or squeeze the nurse’s hand to let them know I was still okay, so I guess that was a little unexpected or my readings suddenly went crazy or something.
HOWEVER, I know a lot of people who have said it was super easy, straightforward and minimally painful, and it seems to just depend on your anatomy 🤷♀️ I think because I’m only 4ft 11, everything is kind of squished together and there isn’t a clear gap for the needle to pass through. I didn’t get any after effects like some people do; my back hurt where I was stabbed in the spine (fair enough) but I didn’t have a headache or fluid leakage or anything. I had coffee and red bull and salted nuts and stuff, as advised, so maybe that helped.
Even if I needed another one for something, I wouldn’t do it.
MRIs on the other hand, I love lol. I don’t spend much time during the day sat down, and just being able to lay there and do nothing, it’s awesome 😂 I would recommend closing your eyes though - I would definitely get claustrophobic if I didn’t!
One time they also put me in the kids’ MRI just because that happened to be the one they had free. If you’re claustrophobic, try asking if they can do that for you! It was amazing. It doesn’t cover as much of you, you don’t need to take your clothes off and get into a gown, and they can either play movies into the MRI using some sort of mirror system, or they have a colourful light show thing which is meant to entertain babies but is also relaxing for grown ups!
Wow that was so informative.I have a relative who was diagnosed last week.Keep safe.
Hello,Sara
Nice to meet you
New Subscriber here from Amman Jordan 🇯🇴 The Middle East
Thanks for sharing your story and all the interesting information
Warm Hugs 🤗
Thank you!!
Thank you so much for your advice 🙏
Youre not silly. (EVER) Youre a Trooper & an Angel for sharing knowledge while Going through all this. You give validation to many anonymous sufferers. Thanks. I get Myoclonic Seizures caused by Heat. I only learned recently that Random HICCUPS are part of this type of Seizure Activity. Its a TELL for me when I get Hiccups. That I'm not in good shape.
4:43 cold is absolutely painful for me! 5:46 I get icy legs sometimes and it is excruciating.
Yes the cold is awful!!
Similar to you a symptom a few years before my Dx was tripping when running up stairs at work and had an issue lifting that leg up and out of the car. I went to a sports Dr and it was attributed to the aggressive leg lifts done during a kick-boxing exercise class. Then a blind spot (kidney shaped and pixelated) in my 2nd trimester that faded in my 3rd. This one was noted "possibly ON" and I should have followed up on it after birth but I was busy working and mothering and after all the issue went away- probably just weird pregnancy hormones I thought.
When my daughter was 3 1/2 one foot was sticking out funny when I got up but we were off to a park to see the fall colors and I just kept going. No pain. I was referred directly to a MS Neurologist at the U of MN who quickly Dx me back in 2005. My blind spot was also reviewed there so all the records were available.
For me the cold is way worse than the heat but in WI I get more cold than heat ;-0 It ties into my spasticity which is really one of my worst symptoms although I didn't realize it for a long time. It was behind my gait issues/circumducting resulting in a hip replacement over time. I now get botox shots into my calf and that helps my toes lift better so I don't catch them and trip.
Your early symptoms are a lot like mine. I wish they would be better at diagnosing. I never even thought it was MS, I was completely shocked and confused when I was diagnosed. I often wonder and I know I shouldn’t, but how much better off I would be if I was diagnosed earlier. I am realizing this summer that I am sensitive to too much heat now as well ☹️ it isn’t bad but still not happy about it. It’s like I need everything perfect and that just not how life is lol. I love your comments on my videos so much!! Thank you, really helps me feel like I am not alone.
I have vague weird symptoms for literally two decades and doctors think I am still in too good shape for it to be MS. So, sometimes, it's probably a neuropathy or something. My symptoms lasted from couple of days to couple of weeks and were quite sudden on onset: vertigo, dizziness, really overactive bladder (can't do without bathroom literally 2 minutes), a bit more blurred vision than usual, face twitching and twitching on other body spots, weird unexplained pains mostly in neck (real bad), also ankles, wrists, feet, back, and the one I have the longest: unexplained itching, mostly in lower legs, that got worse and worse in time and sometimes it's borderline pain (does not last long though). So it kind of can be nothing, but I don't know, it's weird.
Did anyone have tinitus as one of your symptoms?
I am curious if you have ever had any episodes of syncope?
I’ve been kinda wondering if I should talk to my doctor or not about this. I just turned 26, but for years I’ve had extreme fatigue, nearly falling asleep at my desk at work or in the car driving 15 minutes away to go home at the end of the day. I also have like zero sex drive at all. Those are two things I know are kinda common with MS. But in the last 3 years I’ve had pain in my left knee that has progressively gotten worse, my x rays show that there’s nothing wrong though. The pain comes and goes but when it’s there it can last hours or a full day and by the next it’s gone. But it does pop a lot when I bend it. But I’ve noticed a burning sensation to the skin on my knee when it hurts, I also get Charley horses a lot in my feet, I get a lot of pinched nerve feelings in my back and it gives out. I also have little twitches throughout my body where my foot or hand will twitch. Or just parts of my arm. I also have a weird thing that happens where I feel like the blood in my veins is boiling. It’s the best way I can describe it. Like sticking a straw in a milk glass and blowing and watching the milk bubble, I get a weird feeling in my legs sometimes that feels like that. I’ve had my legs and arms “fall alseep” but that’s mostly been under “normal” circumstances such as sitting too long or something so nothing too weird there, although my leg fell asleep and got tingly when I was washing dishes one time so idk 🤷🏻♀️ I do frequently urinate a lot too, the other day my bladder was full and I so I went, I’m not kidding you after 5 minutes it already felt full again and I had to desperately go. I get embarrassed at work because I go pee every 20-30 minutes
Hello! Where were your lesions if u don’t mind me asking?
Brain and spine
Thank you! I have never kept a symptom diary. Maybe I should. I have my brain MRI every two years, with and without contrast. It takes around 45 minutes. When you add the other parts, like the neck and thoracic spine, it gets long. I hated that. No new symptoms on my end. Have a good day!
Glad to hear you have had no new symptoms. Yes the diary. I wish I would of done that. I wish you well.
Wow - I also struggle with cold. I often feel cold in my hands. It could be related to the location of my lesions near the hippocampus. My numb hand initially appeared to be carpal tunnel syndrome. Thx for the video.
Did your hand numbness go away?
My issues are mostly with spinal cord, so the earliest ignored symptoms were dizziness (thought nothing of it, maybe just need more sleep) and very, very slight weakness in one leg, but that was only noticeable under relatively extreme circumstances - when I tried to do squats on one leg - I was able to do them on one leg, but not the other. Maybe gut issues too, but I gut IBS (irritable bowel syndrome, perhaps caused by SIBO - small intestine bacterial overgrowth, I'll try to get tested for that), thus not sure about those.
What about seeing random flashes of light? Lately I've been seeing random flashes of blue or green for maybe a split second and I think I'm just imagining things as it goes away quickly. I get my eyes checked every year and have no concerns expressed by my doc. I've had symptoms related to MS, told my Rheumatologist and she has ruled my symptoms more aligned to Fibromyalgia. I saw a neurologist first and she referred me to a Rheumatologist after I tested ANA positive. I did that nerve test and everything came out fine just a little weakness with my left side of my body. Blood tests ruled out no autoimmune issues nor nutritional deficiencies. Should I ask to be tested for MS?
I used to get sores on my upper back and shoulders really ugly, and they would pit and get deep and have like a Puss drainage for a while & they took forever to heal up. I had went to the doctor for another problem and when he was listening to my heart, he also listened on my back and he saw the sores and he ask if I had MS I ask him why and he said oh I saw your sores do people with MS get soresI’ve had sores for years and they’re nasty ones. I do have a few of the other symptoms but the doctors always look at me and say oh you’re fine.
Did you ever experience a feeling of internal vibration when sleeping? At first I thought my dog was scratching herself at the end of the bed. This feeling has progressed from just early in the morning occasionally to every night and several times a night and not gentle vibrations now. It first started in 2019. Every doctor including Neurologist, cardiologist, primary doctor has never said anything re MS, however, my symptoms sound similar to many you describe.
I get this all the time but think it’s twitches because of ADd meds….
They’re all over…. But feels more like spasms in your arteries
Yes, i get that but I’ve not been diagnosed with MS. I have an appointment to have an MRI scan soon because of awful nerve pain and numbness on my left side.
I have the exact same thing has it still been happening?
I have weakness on my right arm and legs. I have weird sensation it’s not pain it’s like some parts of the muscle get tense and the urge to massage or pressure them😢
So... the black spot. Did it look like a bug was in your face?
That's what I just recently started seeing in my right eye. I mentioned to my neuro. He is also ms specialist, but he said most likely a floater. But now the same thing happening in my left eye. And the "fuzzy bug" is just a black dot now. I don't really see a black dot anymore occasionally it will on my right. WDYT?
I see my eye Dr in 2 weeks. I hope she can tell me yes it's because you getting old (😅 I'm 45) its a floater or no this is your optic neuritis. I really trust her. She was the first Dr I saw who said all your tests are normal but I am telling you I strongly feel you need an mri. I tell her everytime how grateful I am.
I also have cold intolerance. It's so uncomfortable, and annoying that I spend my spoons shaving my legs to be Ms. Prickles 😂
Then once diagnosed 3 yrs ago I now have pretty severe heat intolerance which is such a challenge in AZ. The cold is not fun but at least I can function. The heat activates all your symptoms, makes you sick and turns you into putty. Basically I am pretty inactive 5 months of the year with this heat. 😢 and a cooling vest doesn't really help much with 116 degree weather going on right now.
I tell my husband I'm either hot or cold. High maintenance and hard to please and nothing is ever perfect 😂😂
Thanks for your video!!!
Maybe, it is so hard to explain, but what I can say because I have had floaters too, it did not move around like a floater. Does yours move around? I am so glad to hear you have a doctor you can trust! Makes all the difference. The cold intolerance sucks right? I hate it. Yes I feel like such high maintenance too! LOL. Thank you for watching and the comments!
Another very very rare on...Brain tumour.
When I was being diagnosed (in 2021) they also found an orange size brain tumour on my cerebellum.
My MS Neurologist said (if I don't know what MS is as he's pointing to my brain tumour on MRI)
My MS Neurologist is world renowned too and in Canada.
I also get the odd vibration feeling inside, arms and legs too.
Who is the Neuologist if I may ask
@@somethingkindawonderful3034 I'm in Canada and this MS neurologist is world renowned
I’ve got burning feet! 24/7!! Omg I hate cold!! I can’t warm up I’ve tried everything!
Have you tried compression socks? That has been helping me.
how do you get someone in denial to the neurologist?????
Love your shirt 🧡🧡
Thank you!
@Saraslivingwithms do you have a link we could buy a shirt like this?
I’m a Sarah with MS
I have had it from 2019 and it is murder
My sister is 32 years old and she has suffered from meniere disease for years and she always complains to me that I had to bought her Dr Madida herbs I saw on TH-cam and she is telling me last month that she is cured completely and don’t long have the symptoms like vertigo or dizziness, feeling of fullness in the ear or ringing, hearing loss, imbalance, motion sickness, nausea, or nystagmus🎉🎉.