@MelvieMoon

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MelvieMoon

What lead you to your MS diagnosis?

I would like to start a thread to find out how others found out lead others to their MS diagnosis... I found out I had MS by fluke and for that I am extremely grateful! I started out with what I can only describe as ‘my own legs not feeling like my own’...I got bloods done and found out I was deficient in vitamin B12, got the injections and 6 weeks after the last one I had to get bloods done to check my B12 levels. Bloods came back and an antibody level in my bloods wasn’t right and the GP referred me to a rheumatologist to be safe. Rheumatologist sent me for an MRI on my spine, radiologist requested an MRI of my brain after the initial MRI as they noticed some lesions on my spine but at the time weren’t sure if they were tumors. Had the next MRI, rheumatologist referred me to a Nuero and I was diagnosed with MS! Let’s hear your story ❤️

LauraB90

@LauraB90

Hey Melissa_larkin I had a weird sensation in my legs, slight pins and needles, but I kind of just ignored it. Then I woke up a few days later, couldn't physically stand or walk and my left arm was limp like a rag doll...no feeling. Scary stuff! Thought I'd had a stroke! Was in hospital over a week, lots of tests and scans. Went home still unable to walk given strong steroids over Christmas that slowly improved it, and was diagnosed formally by a neurologist a month or so later. It's crazy thinking back to that! xx

lukezni

@lukezni

I woke up with double vision one morning, I waited a few days to see if it would go away but it gradually got worse. So I went to see my GP and he treated me for 6th nerve palsy, so he referred me to the eye clinic at the hospital. Spent 10 hours in there mainly waiting to be seen. Got a few eye and blood tests done and a CT scan which didn't pick up anything. Seen around 3 different doctors all telling me they didn't know why I was seeing double. So I had to wait a month or 2 on an MRI on my brain which picked up inflammation and active lesions. I got my results to that when I was seeing my orthoptist, he suggested I had MS and referred me to neurology. My first appointment with my neurologist and she diagnosed me with RRMS. Was given steroids to help with my double vision but they didn't help. I've had 2 more MRIs since diagnosis all picking up new activity in my brain & spine. Since my last MRI I've started Ocrevus treatment.

ItsMewithMS

@ItsMewithMS

If you put Diagnosis in the little magnifying glass in the upper right you will see many posts of people talking about their diagnosis. There are also a lot of pages on the internet of common tests and symptoms. This one is good: https://www.healthline.com/health/multiple-sclerosis/early-signs Somewhere I read that 40-50% of cases are diagnosed from ON as the earliest symptom. I had what they thought was ON when I was pregnant with my daughter 18 years ago but when I discuss those symptoms at a leading neurological department they say that my symptoms don't sound like that they would call ON but rather an optical migraine. They went away in my 3rd trimester of pregnancy which is typical of MS symptoms but who knows! Anyways 2 1/2 years later my one foot was sticking to the outside about 30 degrees when I tried to walk. No pain but of course it affected my gait. I still went about my plans that weekend with my family which involved walking a long ways on a paved path through a state park enjoying the fall colors. The next week a neurologist put me into an MRI tube and confirmed it was MS and started me on a DMT.

MelvieMoon

@MelvieMoon

@aoife_brennan_1 @laurab90 @lukezni @itsmewithms thank you for sharing your stories! It’s crazy how much they vary ❤️

Mlgilber1

@Mlgilber1

My legs had been numb and tingly for over a year and then the right side of my face went numb for a couple weeks. I went to my primary who did some bloodwork and said I was deficient in B12 and he also referred me to a neurologist. By that time my eyesight was also blurry and I was feeling drunk/high. He ran a bunch of tests and a brain MRI without the contrast which all came back normal and he told me it was anxiety. A few days later the numbness spread and I knew something was wrong so I went to the hospital and they did a spine MRI and lumbar puncture and that’s how I was diagnosed. I’m thankful the ER doctor took me seriously and even though it took a year or two to figure out what was wrong I’m thankful it didn’t take as long as I know it did for some people. I was put on a DMT, but ended up back in the hospital a month later and they found more lesions on my brain and spine and told me mine was aggressive so now I’m on a different DMT (Ocrevus) and it’s finally under control.

ItsMewithMS

@ItsMewithMS

A relative of husband had a strange fatigue that was just very unusual and especially since he was in his 20's and usually pretty energetic. Also some strange tinglies and weakness. Then he was diagnosed with MS. The symptoms can be so many things - which is often why it is misdiagnosed or takes so long to diagnose.

shelley44

@shelley44

My gp said I had fibromyalgia .my arms all tired and right one was weaker .my aunt has Ms so I was worried I might but she said no way you have it .I'll refer you to neurologist just to put your own mind at ease .after waiting a year to see neurologist .I was sent for electro testing on fingers and toes to be told I had carpal tunnel syndrome ..he also said I didnt have all signs off Ms and wasnt concerned at all but same as my gp said for my own peace of mind he will send me for MRI..the MRI lead to lumber puncture . To be told I had Ms ..you no your own body

Tatiana_De_La_Haye

@Tatiana_De_La_Haye

Mine started when I was 9, I got a stomach bug with turned into constant vomiting doctor said it was 24 hours and then double vision and no balance dr came out thought I had meningitis then he said go back to dr so I did and he said I need to be taken to hospital cause he thought it was a Tumor. Only got diagnosed when I was 12 first relapse was 2 months ago, I am now 19.

Mallory_Schiferl_1

@Mallory_Schiferl_1

I was diagnosed 3 years ago- having woke up one morning with a severe hearing deficit in my right ear. I was told to go to the ER where I was met by the Hospitals ENT Doctor. He streamlined me to an MRI and the a Lumbar puncture to verify... diagnosis less than 2 weeks after original symptoms presented. I am suprisingly thankful. As difficult as the diagnosis has been, I know and have read horror stories of so many others fighting for answers. I am very lucky to have found the reason so quickly.

DoxieLover

@DoxieLover

I developed optic neuritis and lost full vision in my right eye then developed numbness down my right side. Been officially diagnosed since Jan but my optic neuritis started in August 2018 and my neuro ophthalmologist told me then that it was very likely it was MS

Rel12

@Rel12

Hi everyone! Thank you for sharing that @melissa_larkin. Just like most people, the process to get the diagnosis took a long time. (This was all in a matter of months-years) Symptoms started years before, of course I never knew. My ankle started to get numb but never thought anything of it & thought it was from a car accident I was in from few years prior. My nights out drinking & partying made me realize that I wasn't just drunk walking (even though everyone thought I was). My first MRI showed that I had a herniated disk on my lower back, this doctor didn't seem to think it was important for me to know about any lesions that were also found on my spine. Time went by & almost looked into surgery because this is what this doctor recommended. I knew something was not right & went for a 2nd opinion. The neurologist knew immediately after giving me a nerve test so she sent me off to do my 3 MRI's. After confirmation, I was shocked & kind of in denial. We were confused as to why the first doc never brought up these lesions (wrote a bad review on him - sorry not sorry). Anyway we all have crazy stories that lead up to this mystery of a disease. Just remember, always go with your gut!

Ben_Coleman

@Ben_Coleman

Good afternoon I was first diagnosed after I went completely numb from the waist down I went in to hospital and had test done and was told it was a trapped nerve.I was not happy with the outcome but thought to myself the doctors no best so went along with it around a month later I started having blurred vision in my left eye and again they said it could be trapped nerves etc. I then decided to go to the doctors again to get some help and to look into what was going on finally after a year and many test a simple lumbar puncture they diagnosed me with ms and have been living with it now for a year.I had to try two different medications so my body would adapt but I do feel better in myself for getting the treatment and help I needed.If there is one bit of advice I could give anyone that has been newly diagnosed would simple be don’t let it beat you carry on and do your normal life and get the best out of it.

Jerilynn_King

@Jerilynn_King

Optic neuritis started in late 1990s. Did not get diagnosed until August of 2002 at the age of 44. My right eye was like looking through cellophane and it shakes. Sometimes colors are very dim. Now I have numbness in both legs and sometimes arms. Lots of pain and excessive depressive disorder. Fatigue occasionally where I sleep up to 30 hours at a time! My husband is awesome and takes great care of me! I am blessed with a wonderful family! My niece even bought a house with a bedroom and bath on the first floor so when I visit, which is a lot, I don’t have to climb the stairs! God bless you all and thanks for sharing!

Sharon_McConkey

@Sharon_McConkey

I was suffering from a massive migraine. It felt like someone was trying to remove my left eye and the left side of my face was numb. The first MRI without contrast showed lesions but I was told that is because I had a headache. I fought hard with my PCP and finally was accepted at Barrows. New MRI showed lots of areas in my brain and in my C-spine. That was in February of 2018. To major flares since then. Now I need a cane and some are saying I should have a rollator. Not what I had planned for my life.

Shereen_Pope

@Shereen_Pope

My left side went numb, called 111 they advised I go to a walk in. I spoke to the dr who thought it was a stroke, once I gave her my history of optic neurits twice in the same eye. She insisted I came back on Monday was diagnosed by the Friday.

beky

@beky

Hi @melissa_larkin Mine was 2 years ago I went numb and got pins and needles down left side of my face and scalp, slurring my speech. Got straight in with GP who said it was a sinus infection and gave anti biotics. Next day it has spread down tje left of my neck and shoulder. Went back to GP who said it was most likely stress related due to me panicking! The next day again, left arm went numb and floppy. My husband panicked and took me to a&e bit there was a 10 hour wait so we left and i went to GP the next day. He still thought it was stress related but got me a head ct scan. That came back clear so he referred me to a neurologist. She had MRI done of my head neck and back and weirdly my brain is clear but I had several spinal legions. They did an LP and confirmed MS. 9 months to the day since that happened i got my diagnosis (Looking back, they are counting my strange episode of what i believed to be ''sciatica' as my initial onset 6 years ago)

DaveO

@DaveO

Numb leg in December 2017. Went to the Dr. Was sent for physio to relieve a trapped nerve. That cleared up in January. March 18 lost vision in my right eye. Went to the opticians who referred me to the eye hospital. He suspected optic neuritis. I didn't know what that was. Eye hospital confirmed optic nueritis. I knew at this point it was Ms thanks to Google. Eye hospital referred me for an mri. Neurologist confirmed ms in April 18. Life can be shit sometimes. But I'm grateful diagnosis happened so quickly. I've read stories of people taking years to be get to diagnosis. On cladribine. Hoping it will help.

DominicS

@DominicS

L'hermittes sign. I was out for a run in Windsor Great Park (of course, I well remember where I was) in 1994 as I had gotten a bit chubby and out of shape. It kept happening and over dinner with friends I mentioned it to a cardiologist mate. She was v cool about it, suggested I give the running na break and see my GP in a month if it still persisted. It did, I did. He referred me to a neuro and I had the battery of usual tests. Having read my GPs handwriting upside down and seen him write l'hermittes I had got ahead of things. I went into the medical library in Kettering Hospital, looked it up and photocopied the pages to show to my then girlfriend, a pharmacology researcher. Quite the shock but when he told me I already knew. No such thing as MS nurses in those days. I asked what to do and he said that I should 'Eat less red meat' and that was the sum total of the advice and help I got at the time. With hindsight, the lack of engagement caused me to try and ignore it then get off my arse and start learning all that I could. Moving to Oxford for work put me under the care of an amazing team of people. I had the same nurse for 15 odd years!

Robean

@Robean

5 years ago I when I was 21 I got in my car one morning and realised I could see two of the same car in the lane in front! Saw an optician who told me I was probably stressed or tired but referred me to the eye clinic at the hospital via my GP. Advised me to go to eye casualty in the next town if it got worse, which it did, so off I went to eye casualty. Had an urgent MRI scan later that week. By this point I was terrified something serious was wrong, I’d convinced myself I had a brain tumour, thanks Dr Google! MRI showed lesions so I had a lumbar puncture which was positive. Neurologist told me that there was a strong possibility I had MS but we would need to see if I had another episode to officially diagnose. Fast forward to May this year, I had a second episode of double vision. Another MRI scan showed new lesions and therefore a confirmed diagnosis! Now waiting to start treatment with Tecfidera!

Sez81

@Sez81

@Mlgilber1 when you went for MRI at the hospital did they use contrast then? I just had brain and spine mri without contrast. I haven't seen the neurologist yet. Been a long drawn out process to get to this point. Have seen an endocrinologist as GP and I discussed seeing someone to get scans underway before seeing the neuro. I am so frustrated as I know everything I am experiencing isn't right but never getting answers. I first had nerve conduction tests in 2017 as I had tingling in my right hand.

Mlgilber1

@Mlgilber1

@sarah_williams They did use contrast when I was at the hospital. I believe the contrast is to see which lesions are active so lesions will still show up even without the contrast. I’m really sorry it’s been a long process for you and I hope you get answers soon. I know how frustrating it is. Hopefully you’re able to see a neurologist soon.

Sez81

@Sez81

@mlgilber thanks. It's two weeks away. The dr I spoke to said she will go through the MRI with me. She is an MS and Epilepsy specialist so she is a good choice for me as I have Epilepsy, though it is controlled. Definitely tired of hitting brick walls!

doubleo7HUD

@doubleo7HUD

A little light reading for thee, there’s no violins ere and if you get offended easy you can always hide behind rather sofa. https://shift.ms/topic/my-ma-story-so-far-parental-guidance

JamesC83

@JamesC83

@melissa_larkin Thanks for asking, it makes me feel better when people do ask, as it was a hugely momentous point in my life and something I need to get off my chest every now and then. For me one minute I was playing football weekly running past people like they weren’t there, next I was in hospital, could barely walk, see or feel anything being told I had ms. Only took 5 minutes exam (must have been textbook) and was a complete shock which 5 years later, I still haven't got over and I don’t think ever will. Hope you are ok. Best wishes

Eileenp

@Eileenp

It started 2 years ago with chronic back ache, pins and needles in my back. Symptoms have been getting worse. This summer I lost my plumbing so to speak. I had to self catheter. Just last week i had an MRI scan of my brain and spine. Waiting for results. Specialist keep telling me its a pinched nerve.

Eileenp

@Eileenp

I'm either going to the washroom 10 times a day or more or not emptying bladder out completely. I'm seeing floaters. One spine specialist said it was just a buldged disc. I've been pushing for more tests. Has an MRI last week. Waiting and scarred.