My MS Story: Numbness and Sensory Loss

[@mandysilveira5457]

The start of your symptoms sound so similar to mine! I’m still in the diagnostic process so I’m nothing concrete as of yet. My MRI was done with OUT contrast and didn’t show anything. I’m scheduled for another WITH contrast this week. I’d love to get to the bottom of my symptoms so I can start a therapy to feel better.

[@lauraironstalksms]

Hi Mandy, hopefully your second MRI scan will give you an answer as the contrast helps certain tissues show up in greater detail. Yes, I'm sure you do want an answer, and I believe the quicker you are diagnosed, the quicker you can start therapy and the better chance you have of potentially halting progression. I have my fingers and toes crossed for you 🤞 please let me know how you get on with your MRI

[@maryxoxo9]

How did your mri go ?

[@mandysilveira5457]

maryxoxo9 My MRI ended up being totally normal. I’ve since had additional testing with specialists and it’s looking more like I have Primary Lateral Sclerosis (PLS), which is a non-fatal, rare form of ALS. In many ways a lot of the symptoms are similarly to Primary Progressive MS.

[@maryxoxo9]

@@mandysilveira5457 I hope you can feel better soon..

[@lauraironstalksms]

I'm glad that you finally found out what it is. I just read up on PLS and yes it does have many symptoms which are similar to those of MS as I'm guessing it primarily affects the brain. I hope that you will be in good hands and get the help and treatment you need. Good luck with everything

[@home2barry]

I've got an appointment with my doctor again, about going to see an neurologist again. As my symptoms have gotten worse/more new ones. But the neurologist the first time (a few years ago) just said after going a 5 minute examination, that "it's not neurological*. So hopefully this time around they do more investigation and MRI and so on. My symptoms were and are... 1) Pain in limbs, (comes & goes) 2) Tingles/pins and needles (comes & goes). 3) electrical vibration (like a mobile vibrating in your pocket) (came & went). 4) sore right eyes, and left eye pulses (comes and goes) 5) Back and neck pain (comes and goes) 6) constant headache 7) difficult finding words (I do have dyslexic and this is a trait of Dyslexia, but sort of new for me). 8) Balance goes, most when I stand or go upstairs. If anyone has the same symptoms. It would be great to hear from you and to hear what your thoughts are on them, and if you have been told you have or have not got MS. Thanks

[@lauraironstalksms]

Hello, I was just wondering how your examination went? Did you get any answers?

[@boonyangi]

hello, im wondering what diagnosis you received? im also experiencing almost the same symptoms like you.

[@lauraironstalksms]

Hello, yes I was diagnosed with RRMS

[@Nnyv]

Hello from Canada! My symptoms started off as double vision and other visual disturbances (eyes not working together, mainly), which mostly cleared up within a couple of weeks. That was in April of 2021. Fast forward to end of November, when I woke up one morning feeling like I had slept in a bad position with stiffness and tightness in my neck, and tingling in my left hand. After about a day, the stiffness in my neck mostly cleared up, but the tingling in my hand remained, and I started developing a pain in my hand reminiscent of tendonitis or carpal tunnel. I didn't think much of it at the time and decided to take a break from using the computer (I'm on it often), and decided to ice my wrist and hand and give it rest, especially so when the ache started stretching up my whole arm and into my shoulder. After a couple more weeks the numbness and tingling spread; now it was starting in my right fingertips, as well as spreading all around my ribcage and stretching up into the left side of my neck and jaw. At this point I thought, "Ok. This is not tendonitis or carpal tunnel." I was also losing my ability to control my left hand movements. I couldn't pick things up in my left hand, kept dropping things - even a sheet of paper - from my left hand, and couldn't type for lack of finger control with my left hand. I couldn't tie my hair back in a ponytail. I even had trouble buttoning up my jeans for a bit. So, mid-December, I contacted my doctor's office and was able to be seen the same evening. My doctor decided to order MRIs of my entire head and spine. I had almost a month to wait, but my first MRI (of my head and cervical spine, with and without contrast) was indicative of demyelination. At first, I was terrified of this result. My doctor gave me an urgent referral to a neurologist, and within a couple of weeks I had an appointment. (***MRIs were done in mid-late January. My appointment with a neurologist was in early February.) The neurologist I saw, who is also an MS specialist, performed a physical examination of me, including walking tests, eye tests, and the tuning fork test (in which I couldn't accurately feel when the vibrations stopped). She decided a lumbar puncture would have been overkill, given what she saw from the examination as well as my head MRI scan, and was diagnosed with MS, with relapsing-remitting being the suspected form. I still have numbness in my hands in varying degrees from day to day, with my left being significantly worse than my right, but at least I am (very) slowly regaining mobility.

[@lauraironstalksms]

Hi! Thank you for sharing your story, every story is so important to each of us, some completely different and some very similar. Lots of your symptoms sound so similar to mine and what I went through, I sounds like you went through a lot too and hopefully you are coming out of the other side. It can be a long hard process, but with time and patience things do get easier. 🧡

[@12mannation253]

Hi laura im a 31 year old male currant tabacco smoker as well. i have been having extreme tingling pins and needles daily for months in face arms and legs as well as off and onset of vertigo . Had numerous ct scans the hospitals all say they look fine seen neurologist she put me on gabapentin and told me to fallow up with her. Just so fustrating and so sad depressed and misarable . Anything that touches my skin hurts as well . Just dont no what to do anymore 😢

[@shawnmcanthony5724]

Its ms for sure

[@LouCenko]

I'm 30 myself, diagnosed Dec 26th with ms following numbness in left face. Now it's all over my body, legs arms. Hands tingling and fingers feel like they'll explode and hurts if something touches. Started kesimpta 3 weeks ago...

[@missbee980]

Not diagnosed yet: I have fatigue that I have described to my husband as feeling so fatigued that if I don't just lay down and try to sleep that I'm going to cry or collapse. I am not a crier but that's how it feels. I have had severe tremor following heat exposure and frequently it makes my heart race. I also get overheated and sweaty in temps that other people are unbothered by. If I try to do weight training, I am severely severely sore for 4-7 days. I have recently experienced pain with eye movements and double vision with eye movements. I have a appt coming up with the eye doc in 5 days. I am also experiencing issues with high contrast web pages. It looks like the words are 3D like above the page. If that makes sense. I lose my balance when my eyes are closed. I lose my balance and tilt sideways at times. Bright light, sunlight or artificial is intolerable. I love my sunglasses. Flashing bright light is extremely bothersome. Continuous loud noises are intolerable. Too much going on at once is overwhelming, ie. multiple conversations in a room, loud TV or music plus trying to have a conversation, trying to pay attention to multiple things at once such as while driving. These things used to not be an issue. I am having problems paying attention to more than one thing at a time, so I stopped driving. I cannot see the dividing lines on the road at night when it is raining at all. A few years ago I had to get a hotel on a trip because I just could not tell where I was on the road. Sometimes when I'm talking, a word comes out as a blend of 2 different words. Like my brain couldn't decide in time and blended the words. I terribly easily forget what I was going to say or do. Sometimes I feel like I can't swallow, like I forgot how. It usually lasts 10 seconds or so then i can swallow again. Of, course I get tingly pins and needles sensations out of the blue in places. My face, thigh, and one foot have lost a lot of sensation. My jaw sometimes jerks shut involuntarily when I am eating involuntarily and I bite my cheek. Sometimes when I am working, I involuntarily click the mouse.I get startled very easily and overreact. I seem to get choked up more when eating than before. Frequent urination night and day. Headaches. Neck pain. I sometimes forget what I just read and sometimes have to reread a passage 2-3 times. I get a lot of muscle twitches in my face and arms and eyes. Sometimes spasms..legs, feet, jaw, back. Painful rectal spasms. I have IBS. Occipital neuralgia. Once I dropped my glass of water for no reason. Just could not maintain my grip. I got another glass after cleaning up and walked away and it happened again. I dropped it. So frustrating. I also have been diagnosed with dysautonomia.

[@lauraironstalksms]

Sounds like an awful lot of stuff to cope with at once. I hope that you get to the bottom of what the problem is and get a diagnosis so that you can get some help. Wishing you all the best 🙏

[@missbee980]

@@lauraironstalksms thank you sweetie.

[@knet914]

I just left a comment and decided to check out others. I share in pretty much ALL of the symptoms that you described. Especially the sun bright lights with vision. Always need sunglasses even on a cloudy day. They're ALL Frustrating. Your not alone. MS Sucks! I think it is caused by environmental toxins in our anything; food, water, air and Stress🤯

[@LucieCreates]

The problem with my early symptoms (which appeared about 1.5 years before my diagnosis), was that I was attributing them to other things, such as a verified herniated disc and being very active with gardening work. The truth is I was ignoring bodily signals! I went from being a highly active person in 2020 to needing a cane or walker by the end of 2021

[@lauraironstalksms]

It is difficult sometimes not to just do the easy thing and ignore your body's signals and what it's trying to tell you. Now I stop and listen to my body and try to do the right thing by it - but sometimes easier said than done!

[@knet914]

I just left a comment and decided to check out the rest. Similar to you, I dismissed earlier signs as whatever else, totally unaware of MS until profound symptoms of loss of balance and numb from my waist down got me to the hospital for diagnosis in 2021. Went downhill quick. I'm disabled now and need a cane to help prevent my from falling. I call it my kickstand. Very frustrating.

[@MichaelRichard0]

My stuff all happens on the right side and I was right handed my whole life but eventually converted to left-handed. Always been pretty good about pain and I don't really get pain with MS as some do just numbness and lack of muscle control. Always got to Oxbridge from you but still surprised I was right. Dig the hair.

[@davidadodo2592]

I can say that the first symptoms started 20 years ago like yours with numbness in the whole leg And only in 2022 they discovered ms

[@chumola9]

Wow. You experience was different of me. I was at school, learning about going to school and I saw my foot drop. And I knew something was wrong. Age 4.

[@knet914]

Hi Laura, my name is Kerrick. I live in Pennsylvania. Have MS and similar story, had a very active lifestyle and rode motorcycles, a Black Beauty. 1981 Yamaha 650 Midnight Maxim. Noticed I was loosing my balance when riding, thought it may have something to do with blood pressure, fatigue, whatever. Quickly afterwards went numb from waist down. Went to family doctor about symptoms, he immediately sent me to hospital for testing. All of them including spinal tap, MRI, etc. I thought that it would be temporary at first. Was wrong. Immediately lost all balance in my mobility, walking, speaking, eating, bowels and bladder. Diagnosed 4 years ago, same as when you posted this video. Bummer it took that long for me to discover it especially since I've been doing not much of anything besides watching KZbin since I'm now disabled. Coping has been difficult, I miss the great lifestyle that I had and I'm sure that you do too.

[@DaffyDuck_0987]

Beautiful bike Laura! Are you still riding? I've been diagnosed about a year ago so had to put off doing my mods and extend my CBT. Was hoping you could shed some light on what its like to ride with MS. Maybe a good idea for future video? Thanks so much in advance! Hope everyone is keeping well.

[@lauraironstalksms]

Unfortunately not riding at the moment!

[@mzdianna]

I'm sorry to hear about what you've been through. On a side note, the wait times you are describing are appalling. I thought wait times in the US were bad. I've been to the ER a lot in my life but I've never had a 7 hour wait. Usually they get me in within an hour at the ER, two hours at most. I went in recently with similar symptoms as you described at the beginning of your video and they did the MRI, a CT Scan and an EKG immediately. All in all, I was probably there for a total of five or six hours but everything that needed to be done was completed in that time frame. Are the wait times you are describing typical in the UK?

[@lauraironstalksms]

Hi, thanks for your message. Yes generally if you're waiting in A&E you are in for a LONG wait. My friend who was in A&E last week went in at 8pm and didn't get home until 3pm.

[@lisarivers8582]

I’m still trying to figure it all out. But at the moment I’ve lost the ability to walk and became paralyzed for a few days. And lost my sight all my drs think it’s MS. So we shall see

[@lauraironstalksms]

I'm sure that is not easy what you are going through, hopefully though with the guidance of good helpful doctors they will be able to put you on the right path to help your recovery.

[@lisarivers8582]

@@lauraironstalksms hey thank you for replying. No it hasn’t been easy at all. Weird things are happening. I’m hoping the drs will have answers but I have a feeling it’s going to be a long journey. Your video has helped me.

[@janelloyd7601]

Hi Laura. I am a 54yr old woman. 5.9.20 I felt tingling in my hands, feet and my left leg felt heavy and numb. After a lifetime of back issuesI assumed I'd got disc issues. Next day my abdomen was numb, both legs were heavy and both hands. I knew as you symptoms were bilateral this was not just discs. I felt no pain, which was unusual. I spent all day on Google. 6.9.20 I called 111 they got a GP to call me and he said I needed to be examined. He made me an appointment that afternoon at a clinic in AE. They were baffled. I was admitted to hospital that evening. Next day I had an MRI and 3 attempts at a lumbar puncture which they eventually did the next day. It had to be a directed LP as they couldn't get any fluid. Ihave been given a probable diagnosis of Transverse Myelitis. I was discharged and walked home. It was explained that this could be the beginning of MS. Since then some numbnesshas eased. Now I struggle like you with temperature and textures. I hate hot water on my hands. Everything I touch feels cold, especially metal. I had to buy new cutlery. Holding my keys is very uncomfortable. I've had an Evoked Potential test on my eye. All good. Now I am waiting for an appointment to discuss the findings of the LP. I know this is probably MS. I found your channel yesterday. Thank you. I am going to arm myself with info and face this with a positive mindset. My fear is work. They are very supportive but my job can be very stressful. Anyway one dayat a time. Than you again for what you do. Best wishes Jane.

[@lauraironstalksms]

Hi Jane, firstly I'm sorry to hear what you've been going through, it's hard times especially when you are experiencing unusual and unsettling symptoms on top of the medical profession being baffled, and the issues you had with the LP. I read up a little on transverse myelitis and can see that CAN appear as a first symptom in conditions such as MS. Can I ask, what was the result of your MRI and was there any lesions present? I'm guessing from the dates this all happened in September? If so, I hope that I can be of some reassurance in the fact that when this happened to mean (Sensory loss in my torso and hands) it took about 7-8 months to fully recover. Now I know that sounds like a long time, and you may not even take that long to fully recover but the body is an amazing thing and with time it will. You have the right mindset, definitely do as much research as possible, but with reputable sources. Keeping positive is what's got me through because I think that approach really pushes you to feel determined that you will get better, the mind is more powerful than we think. In terms of your work, they sound great, however stress is something that you need to start looking at to reduce where possible. If they are understanding maybe they can look at ways to help you and be a little more flexible around your work loads? I worked in a demanding role and in the end it was too much stress for me so I had to leave, best thing I've done to manage a healthy mind and have a fantastic work life balance. Good luck with the LP consultation, please let me know how you get on 🙏

[@janelloyd7601]

@@lauraironstalksms Thank you for taking the time to reply. The relief of knowing there are people who will understand is immense. I can't wait for confirmation of the diagnosis. My MRI .... brain scan normal although in a letter to my GP they said I probably had 3 lesions. High signal T2 T4-5. C4-5 C5-6 C6-7 disc bulges. Inflammatory lesions on cervical and thoracic cord. I was pleasantly surprised to hear that you recovered in 8 months, I assumed this was my new baseline. Glad there is hope of some recovery. I watched your video on exercises for hands and on doing them realise my left arm is weaker. Something to beaware of. It is so hard to articulate my symptoms and tell if they are worsening sometimes, it is so subtle. Anyway, thanks again. I see light, hope and understanding. I hope I can help someone one day. 💕

[@lauraironstalksms]

You're very welcome. It is always comforting to know there are people who you can relate to who know that you're not going crazy! Funnily enough it's my left side which is weak too, but I do my arm stretches every day with the nerve flossing and I have just started another form of non medical pain relief so I'm experimenting with that at the moment. Yes, with almost anything I've learnt that it's time and a lot of patience, but there's a great deal of satisfaction about seeing the results of getting your body back on the road to recovery especially when we didn't ask for this, but I won't be beaten by this disease, I've got my fighting gloves on 😊. Good luck with everything, you sound like a strong willed person which to be honest is half the battle.

[@knet914]

I just left a message and decided to check others out. I'm 54 male. I was diagnosed 3 years ago. Currently disabled. You left your message 3 years ago so I'm guessing you're 57 now. Hope that you're doing and coping well.

[@hassanmarei4762]

there’s a symptom that had been affecting my life,it’s numbness,happen to be numb from head to toe,

[@bonita2311]

Did it go away

[@hassanmarei4762]

@@bonita2311 no since my diagnosis,

[@ericott2561]

Vertigo.

[@michelleerasmus-jack6368]

Laura, its Michelle (from alifeimagined). How do I connect with you privately? Miss our chats.

[@lauraironstalksms]

Hey! So nice to hear from you. I wondered if you were still active on insta? I'm still on there under Laurai1980. Hope you are keeping well ❤️

[@lauraironstalksms]

Hi Michelle, my email address is [e-mail]

[@lphhomestead4591]

Does anyone here have intermittent issues with being dizzy? And loss of feeling/strange sensations in the toes and bottom of their feet to the point walking normaly is a problem?

[@armymomheatherc]

my younger brother just woke up this morning with numbness and tingling on the right side of his body beginning with his face. His right pinky is also numb. He is actually at the Dr right now. It sure sounds like he may have MS.HE IS IN HIS MID 40'S.

[@lg9633]

How did he get on?

[@aNaturalist]

I'm curious about how he's doing now, or any diagnosis? I'm a 43 year old guy with bulging discs, but the numbness has spread to my face now, mostly on the left, like slightly numb left limbs. My right hand got a little numb a couple of months ago for a week, but it has mostly gone back to normal. I have a little bit of fatigue, but I've wondered if it's just my aging and occasional lack of sleep.

[@Thataintnothing]

@@aNaturalistHad same Syptoms ,was an stroke ! Brain Damage and Now Heart Damage.