In 2017, The right side of my body went numb from the chest down. I was scared that it was diabetic neuropathy (since diabetes runs in my family), but after my glucose test came back normal, my PCP believed it might have been a pinched nerve causing my numbness… Fast forward to Oct 2023, I had a really bad case of COVID and started losing vision in my left eye. The minute my optometrist said I needed an MRI on my eye and BRAIN, I knew something was wrong. After I had those scans and met with the doctor the next day, that’s when I was diagnosed. When I think about it now, I feel like I’ve had for a much longer time, likely towards the end of high school/early college? That’s when I started having cognitive/memory issues. As odd as this might sound, I feel a sense of relief from this diagnosis because I struggled to understand my issues. I’m just happy I have answers now and can work towards managing this disease!

I was told to go to a chiropractor when I started having numb legs. My chiropractor was amazing and said this is something more serious. I ended up in the ER barely able to walk. Got an MRI, spinal tap and was finally diagnosed after YEARS of having symptoms.

@SaraslivingwithMS

7 ай бұрын

I hope you are doing well now that you got diagnosed ❤️

@RobdeKlerk-qg6lc

6 ай бұрын

​@@SaraslivingwithMSYou've checked prolotherapie?

@moniquelornettee5169

2 ай бұрын

Me too except my chiropractor told me I had a pinched nerve. I was told this can be reversed and this what I’m working towards! We got this eat right now work out🙏🏼🙏🏼🙏🏼

@federicamatii

24 күн бұрын

was you "numb" in the beginning actually numb or pins-and-niddles-burning-kinda-thing?

@BeautyByBlairMarie

24 күн бұрын

@@federicamatii pins and needles in my feet but my calf and upper leg were numb.

I had a numb left arm followed by a left sided facial palsy at 26. There were no tests for MS at the time. I was told perhaps you have MS and time will tell. At 36 while pregnant I had debilitating vertigo, clumsiness (tripping, shutting my left hand in the silverware drawer and my left foot in the car door) and problems with new glasses that just didn’t work for me. I thought I was too old to be pregnant. When none of these problems passed and an ophthalmologist deduced that the surface of my eye was numb as well as my nose. I was referred to the MS specialist. I was admitted to the hospital and knew the second day that I had MS. I was fortunate to not experience the frustrating years of chasing symptoms with no answer. I was relieved to find I didn’t have an inoperable brain tumour. MS I can work with. But it’s required a lot of adjustment and compromise raising my 3 young children. I accepted that I couldn’t do everything and changed the priorities in my life. I’m 70 now and my children are grown. For most of us (85%) life does go on albeit differently than expected.

@SaraslivingwithMS

11 ай бұрын

Thank you so much for your story. ❤️❤️

Great topic to discuss ... it took me over 15 years to get diagnosed ... so frustrating! It's good to hear your story mainly because you're so tough and a survivor!

@SaraslivingwithMS

Жыл бұрын

Thank you! 15 years?! Wow that’s a long time, sorry to hear that, but glad you finally got some answers. I am hoping with all of our stories and symptom sharing we can make this process faster and easier for future MS’ers

I was lucky and got my diagnosis very fast. In fact I was trying to talk my doctors out of that diagnosis because that was not going to suit my life. Still in denial and shock😫 Best of luck to you Sarah. Got spinal tap end of this week and wish I could get out of that😢

@SaraslivingwithMS

Жыл бұрын

It’s a shocking and horrible diagnosis, definitely life changing. However you can still have a fulfilling and beautiful life, it’s just different than planned. Hang in there. Best of luck on your spinal tap! Mine did not go as planned, not sure if you saw my video on that. It’s the latest one.

Thank you for sharing your story!

I really appreciate your content, thanks so much. Also, you’re so pretty & you were made for on camera.

Sending love, light and all things healing.

Thank you for sharing, can completely relate.

Thanks so much for sharing! Im 23 and when I was 12 was hospitalized. I was falling over all the time. Just total loss of balance. And in severe pain in my head and down my back. I ended up having sepsis but the pain and falling over never went away. They sent me home and said ur body can respond with headaches to trauma like sepsis. I went to specialists. Neurologists, psychiatrists, all the ppl who should have known what I had and they thought I was making it up, over exaggerating, or crazy. Finally, I dropped out of school and for two yrs just waited it out. I couldnt function at all. It affected my thinking and I couldnt do basic math or differentiate between left or right. After 2 yrs the falling stopped and everything got better but it was still there and theyd said i had migraines and those ran in my family so I went to a neurologist to get treated for those. Im on everything they offer and they help some. Its how ive been getting by but i still barely make it. A little while ago I went on a date with a doctor. He heard what I was saying and said it’s MS. He also said half of the drugs im taking for migraines r used for MS so thats y theyre working. He’s given me so much hope bcuz finally all of what i thought were unrelated symptoms r all matching to something. I can’t believe it’s taken me over a decade and my childhood but I think I finally know whats wrong w me. Thank you for ur video. Youre so selfless immediately thinking of ur family and how they’ll cope. They need a mom like u. Just ur presence is a shining light. :)

Oh my gosh - I am a little older than you but yours is the first post that I really identify with - I too thought my issues with walking were due to not recovering well from a knee injury I had incurred, and when I was first diagnosed, through my tears I jokingly said to my neurologist "at least I didn't have to have a spinal tap" and he said "we did not need a tap to diagnose you" - eeek! Same thoughts of "who and how" am I going to get through this - that horrible feeling of vulnerability, which really, for me, was a pointless waste of time, as my husband is a rock, and luckily my rock.

@colleensmith3374

7 ай бұрын

It’s so strange how some symptoms are similar numbness & others not. A solid support system is key & glad to hear your husband is yours:) Fatigue is real & sometimes u just need to rest… it’s a whole new definition of a Power Nap… they’re just a bit longer now… hang in there & love from Colo

I like be listening to you. Love your voice. Calm, informative. Thank-you

@SaraslivingwithMS

Жыл бұрын

Thank you so much!!!

Thanks for sharing your story. I have been going through all the testing for MS the past few months. My neurologist just referred me to a MS specialist a few days ago. I have had different symptoms over the past 20 years but not until 10 months ago I believe after having covid the second time triggered everything. MRI of the brain shows lesions they were unable to complete the MRI’s of the spinal cord with contrast I had a severe reaction. I did do the lumbar puncture which was not terrible except the 3 day migraine was not fun. Can’t get in to the specialist until August but putting one foot in front of the other the best I can. Thanks

@SaraslivingwithMS

Жыл бұрын

Good luck to you! I am sorry to hear you had a bad reaction to the contrast. Having a MS specialist will be great, I wish you well. Thanks for watching and your support!

I totally went through the same stages. I feel for you totally 💔

I am a Type 1 Diabetic. I have been experiencing sutble symptoms which seem to be ramping up. And first i thought is could be diabetic neuropathy. After research and a primary care physician visit, I have a Neurologist appointment in 21 days. Really nervous. Thank you for sharing you story. I hope you are well You look so healthy. Makes me feel a little better.

You had me at end crying because I have been going through waiting since December of 2022 , they done just about every test except Spinal Tap on me and I am still waiting for help.😢.

@SaraslivingwithMS

Жыл бұрын

Have you had an MRI of your brain and spine?

This video is the one I can most relate to. I have lost power in my right leg, have the dreaded hug and fatigue. I’ve just had an MRI and am waiting to hear.

@SaraslivingwithMS

6 ай бұрын

I hope it goes well!

I am super glad I found your channel. You are the first person I have found who has an MS story that seems very similar to mine. Initially I was prescribed Physical Therapy. I was told I had patellar tilt in my right knee. My physical therapist who has always been so awesome is the one who advised me to request an MRI be completed. He felt my issue was beyond a knee problem. I was first referred to an Orthopedic specialist, and then a Medicine and Rehabilitation specialist. This is where I received a STAT order to have an MRI of the brain and spine with and without contrast. It has been quite a journey getting to my diagnosis of MS. Thank you so much for sharing🧡.

@SaraslivingwithMS

Жыл бұрын

Wow that is just like mine!! A good physical therapist made such a difference in my life. How is your leg now?

@violetwonder7

Жыл бұрын

@@SaraslivingwithMS My leg continues to have weakness and fatigue. The longer amount of time I walk, the weakness and fatigue becomes worse. I am able to wear a knee brace to assist with stability of the knee. This helps some, but I do believe it is more of a mental help than an actual physical help if that makes sense.

@SaraslivingwithMS

Жыл бұрын

Yes. I am glad to hear you can walk around though. Keep it up! Are you currently taking any medications?

@violetwonder7

Жыл бұрын

@@SaraslivingwithMS Thank you for your kind and encouraging words! This has been very frustrating and scary for me I am currently taking medication for Migraines (OTC) and Vitamin D weekly. I will have my very first Ocrevus infusion treatment on 6/07/23.

@jacquelinevazquez498

8 ай бұрын

​@@SaraslivingwithMS when walking i felt my knee not going with the flow of things .my knee felt like it wanted to turn left and im walking straight and i couldnt figure how to walk its hard to explain is that how your knee felt its weird

Firstly, You are a warrior and I respect how you are handling this. Much love to you and your family❤. Secondly, I've had several symptoms for like 10 years. 36 now. I've had numerous injuries to my head, neck, and back over my lifetime that I always just pushed under the rug or walked off. Now it seems like more new symptoms and they are getting worse. Curious if you have ever had any injuries like that over your lifetime that you know of?

So glad you had a good physical therapist that was able to help you get to a diagnosis.

@SaraslivingwithMS

Жыл бұрын

Yes then they moved. However the new MS Specialist I just saw was fantastic! My next video I will share that experience. Also a new PT this coming week. Trying to stay focused and positive and keep away the seizures!!

@EvenSoItIsWell

Жыл бұрын

@@SaraslivingwithMS so awesome!

I'm trying to figure out what my own issues are. Like you, I was always shoved to PT to do stretches and stuff. They help reduce the pain I get, but not any of the discomfort and numbness... not to mention, I can't really afford PT often... I'm just trying to figure this out on my own because i don't have the ability to sit through doctors right now, but knowing what to ask the doctors for will help for when I get my energy and time to go.

I was diagnosed the same way with RRMS at 53 but clearly had it much longer before. at 47 I went to emergency room, insane high BP and crossed right eye, and they saw nothing in MRI so they assumed I had a mini-stroke somewhere. then at 53 i was back in the ER for different symptom, couldnt stand and everything wouldn't stop spinning, and then they saw 2 lesions in my brain and one on my spine. that was determined to be a severe relapse. I was out of work for 2 months and then returned. my work is not strenuous. Now I have the drunk walk, tire easily both physically and mentally. it's changed my personality somewhat along with struggling with worsening depression. I'm on Aubagio now for 2.5 years. I have some new symptoms but not debilitating. Good luck on your journey.

Thank you for sharing your very personal journey. I have been having intense head pains on my left side which used to be sporadic but are there almost daily now. My last pain that was so intense caused facial numbness and what I can only describe as jerky movements in my left hand. I have numbness in patches over my left leg and have had a few loss of vision episodes and some very bright white blurring. My dr has no idea what it is and my optician recommended that I have a brain scan which my dr ordered. At this point I’m waiting on the results but my greatest fear is that it shows nothing and everyone thinks it’s in my head. I suffer extreme exhaustion and brain fogging which has been put down to fibromyalgia. Anyone recognise anything that they could perhaps relate to please as I feel quite desperate. Thank you and thank you Sara x

@SaraslivingwithMS

Жыл бұрын

Good luck to you! I hope you get some answers. If the brain scan does not show anything, maybe a spine MRI since you are having numbness, don’t give up!

@janbarriault4494

Жыл бұрын

it's not great is it?? i smoke pot and have added daily multivit, Vit D. Vit K2, magnesium and one avocado per day.. cleaned up my diet too,, dropped most of white sugar, white flour stuff. completely dropped salt!! progress is slow, but seeing some slight improvements... lol been doing this for 7 months now - my GP fired me because he felt i didn't trust him,,, only intelligent thing he ever said... lmao

I hope. Don’t have this, but felt. Have since 21 And now 50. Sometimes slow as molasses and I may have Bipolar. Sometimes migraines and dizzy like I’m on a conveyor belt- for weeks. Years of itchy skin sensitive to cold or wet…. Then weird vision, changes in Bp, sometimes don’t feel my limbs in space when waking up, bladder issues and a weird walk/balance hip flexor stuff. Also sleeping issues. Problem is this could also be other things related to SSRI’s and other meds. I will never know. Now my ears ring , I am tired all the time and wake up ta 11, get in bed at 7 and watch tv all nights Not even comfortable laying in my tempurpedic.

I went through the same thing for years and my gynecologist suggested a neurologist. By then the damage was done. So you had spinal lesions. Me too. I didn't have a spinal tap either. Plan ahead and do the things for a good quality of your life. Adjust to living how you are. Hope you do well. Take care

@SaraslivingwithMS

Жыл бұрын

Thank you! Yes I have legions all over my spine. Has your walking improved? Not sure if you saw my earlier video, but I had breast cancer about a year and a half ago and that really made my leg symptoms much worse. I think it was the stress, surgery and recovery. Thank you for the nice comments! I hope things are going well for you.

@donnamoore8479

Жыл бұрын

@@SaraslivingwithMS hello, my walking didn't improve, it started in my left leg then went to my right leg. I started using a manual wheelchair in order to be at my children's school activities, got hand controls for my vehicle. That way I could still grocery shop and regular stuff. I worked with a disability group and learned that life is more than walking. I saw them still living, laughing, blind, deaf, paraplegic, quadriplegic etc. I also learned how to use and get equipment that would help me to live if and when I needed it. So I got the power bed and got used to it, started using a power chair, got an accessible van, moved my hand controls to it. Had to move from our house to an accessible apartment, learned what and where I needed things. Then purchased a house that could be minimally modified. Oh, went to all my children's graduations from high school and college in my wheelchair. They were just glad I was there. They are amazing, caring and kind people because they learned from my actions when faced with having a disease with no cure. All is not lost because of MS. Take care

@SaraslivingwithMS

Жыл бұрын

@@donnamoore8479 that is so inspiring. You are a strong wonderful person! I am so happy to hear you didn’t let it get you down, you just made modifications. It really gives me hope. I do know I could have a way worse disease or worse things happening in my life. I try to focus on what I can do and not what I can’t. It’s been very therapeutic just being able to talk about it and get my story out there.

Exactly like me. After COVID I had a say back then half my body went desensitised. I went to the e.r and they said I had a mild stroke. About a week later my whole right leg just suddenly went dead, went back to the er and did an mri and a spinal tap. Waiting for results but I know what it is

I was diagnosed in 1997 first symptom was optic neuritis

What were the brain lesions like ? I have been seeing neurologist for 5 years since first attack…. I have 4 small t2 hyperintensities … neuro just asks me to come and see him once a year and get an mri but it doesn’t take long … I cancelled this year because I was feeling pretty good…. Then I developed an eyelid twitch it’s been 4 weeks now and eye pain on the same side…. I got the brain fog and fatigue back and gastoparesis back all at the same time …. So frustrating… I now will wait till Feb Thanks for sharing

@SaraslivingwithMS

6 ай бұрын

I hope everything goes ok and your questions answered, if not can you find another doctor!!

My gf needs to get infusions but doesn’t have insurance do you know any insurance companies that would cover treatment ?

After 45 years of chronic fatigue I have developed symptoms which could be MS. I’ve had a brain and neck MRI without contrast - can it show without contrast?

I don’t have me but some time ago I got really sick and my only thought was to back to my hometown and die there because I didn’t wanted anyone to feel petty for me or to be extra weight on my kids life

@SaraslivingwithMS

Жыл бұрын

Thank you for sharing. I hope you are feeling better now.

@israelvazquez9144

Жыл бұрын

@@SaraslivingwithMS yes thank you.experience in life gives strength to keep going forward and hope for the next miracle,,,thank you again 👍

Do you have a positive babinski reflex?

I started having symptoms in 2018. My PCP sent me for an MRI and blood work then to a neurologist after getting my mri results and I was told that I had white matter disease. In Nov of 2019 I lost feeling on the right side of my face,throat and chest. I was admitted to the hospital and more MRIs were done. There were several changes in the white matter and I was then sent to other neurologists for answers. I was finally diagnosed in June of 2021 with MS. Since then my vocal chords no longer allow me to breathe and talk at the same time so it makes it very hard to communicate sometimes. I also found out that I no longer have any activity in the top half of my right lung. I am not on any treatment because the neurologist told me that the treatment is almost always worse than the disease. Since June of 2021 I have lost all 3 of the neurologists and 2 pulmonologists that I was seeing. I only have my PCP now. I am thankful to have my amazing husband who is always so supportive by my side. I am now 59 years old and this was so unexpected. Thank you for sharing your story. I know many suffer from MS but I also feel like people never understand MS because we "look fine" to them.

Hello, does anyone experience the heaviness of the limbs ? Is it more like paralyzing feeling you get

@SaraslivingwithMS

10 ай бұрын

Is that your only symptom did it just start ?

@angryanglervsacrobat577

9 ай бұрын

@SaraslivingwithMS I have heaviness of limbs and a little weaknesses from time to time, but I have never been diagnosed with it

How was your sleep?

What is the difference between a short MRI vs a 4 hour one? Can they see more?

@SaraslivingwithMS

Жыл бұрын

I believe so. I am learning more about the different types and areas. I need to learn more. I know with and without contrast makes a big difference and I had a full spine MRI which took forever!! What I didn’t know until just this last appointment is that the MRI may not show all the lesions.

@Amaadification

3 ай бұрын

Did you have the full spine and head mri with the contrast dye or without? ​@@SaraslivingwithMS

@wordadversion

Ай бұрын

My hospital gave the option to break the MRIs down into 2hr visits. First one is this coming Friday.

Its my left side, well it sucks

@SaraslivingwithMS

Жыл бұрын

What are your symptoms and what have you tried?

🙏🇧🇷

Sara I love your kitchen.

@SaraslivingwithMS

Жыл бұрын

Lol. Thank you ❤️❤️

Even I had a problem with my leg in 2006 but that was ruled out by saying Rheumatoid Arthritis .. 9 years later in 2015 I was diagnosed with MS so am not sure if my 2006 diagnosis was wrong and I don't even have any means to find that out.

PT I found was not very helpful.

I don’t have anyone , they are all dead. Flying solo with brain lesions.

@JoyP-rw5bc

8 күн бұрын

I heard llystine Helps get rid of lesions

My wife does Not wish to know , I was diagnosed at 57/8 l am 70 in September had to stop Driving and I was a hoppy mountain Walker and I started falls I could not step up to first rung on a ladder or I would fall .

@SaraslivingwithMS

Жыл бұрын

Thank you for commenting. I wish you and your wife well!!

@janbarriault4494

Жыл бұрын

i've stopped getting on chair to hang curtains!! don't really trust my legs or my balance!