11 Sep 2020 05:18Last reply 23 Nov 2020 21:20
Hi, my first symptoms were walking issues and slurring, general look of having had a few too many.
As I live with PPMS, the outlook is that progression COULD lead to increased usage of a mobility aid. Doesn’t happen to all and I hope that Ocrevus stops any progression.
It's certainly encouraging that there are treatment options that can help. Reading about medication really helping has made me feel less scared.
Hi Sarah I was diagnosed in December 2019 my diagnosis was fairly quick to be honest as my first attack was in February 2018! I think my persistence with the doctor and hospital helped. Things I suffered from before my diagnosis were dizziness,leg ache, shooting stabbing pains in my head, tiredness, numbness in my mouth, loss of smell and taste, these things not all together but that’s the general list
@tracey1982 thanks for sharing.
I have a lot of symptoms over the years, possibly even as long as 10 years that never really seemed connected but as more symptoms have appeared as time has passed and more things have been happening at once I have become more concerned.
@tracey1982 have you had new symptoms since diagnosis? How are you doing? I am four days away from an appointment with a general specialist As I can't get into a Neurologist til October. Hoping to get an MRI done soon before I see the Neuro.
I know for some ppl it can take years and years for a diagnosis which is very tough on some ppl. I was fine and living normal then bam 1 day woke up dizzy, could hardly walk etc and hasn’t been the same since feb 2018.mine happened so quickly and after finding out I was vitamin D deficient. I’m new to these groups but I’m always here for a chat 😘
No my symptoms remain the same lines as before tbh.at first they thought I had labyrinthitus then said it was clinically isolated syndrome then after various mri cane the diagnosis. Thought I was going crazy at one point I had no answers and like you was very scared. I’m still getting my head around it
@tracey1982 I have read about both people who struggled to get a diagnosis and then those more like yourself who suddenly one day couldn't move their leg or something like that.
I have had tests previously for my nerves which came back normal. ENT tests which came back normal. Tests for arthritis all normal. Blood works for vitamins etc have been fine recently except for being at the lower end of normal for iron. Every time I get a normal result it just makes me feel frustrated as my body doesn't feel normal, especially this year.
@tracey1982 woah.. Haven't even heard of those! I hear you on the feeling crazy for sure. I can imagine it takes a lot of time to get used to.
I also have epilepsy, which I have had since I was 9 as a result of viral encephalitis and I didn't actually really believe I had it until I had a massive seizure in 2012. Took me a bit of time to make that adjustment of acceptance. I try not to feel anxious about it. It is what it is.
I understand you will get answers will just take time and comparing mri scans.good to know your not deficient in your vitamins tho.i take vitamin D and two extra cranberry because I get uti and vitamin b complex which I’ve took since I had my first attack it’s supposed to help with brain function and had no other major relapse since 2018 so maybe it’s helped idk
@tracey1982 all a big learning curve. Do you have a good neurologist?
@sarah_williams I recently posted a fairly long description of what led to my diagnosis in July - if you want to read it go to my profile and you'll see a post called 'diagnosis the long and winding road'. Symptoms I think are linked to my MS are uveitis and cystoid macular oedema - they aren't 'officially' MS symptoms though I think they are connected. Good luck with your MRI and neuro visit. While you're waiting for clarity try to keep as stress-free as possible (not easy but important)! Also you could have a look at the excellent Aaron Boster videos on YouTube and the OMS website for lifestyle advice. Good luck! x
Mine was just unpaired vision one morning 6 years ago, it ended being diagnosed as optical neuritis, was given corticoids that healed it within a week and was told to have MRI and spinal tap to search for ME, that i never did, as I had no symptoms, no way it was ME....
Then I also had for these years a weird feeling like electricity running down my spine when looking down, was wasn't really an issue for me, so I ignored it. Later I learned it was L'Hermite symptom, typical in ME.
3 months ago I woke up one morning with my left arm and leg numb and weak, thought it was bad sleep... but it lasted for 4 days and then I went to the hospital, this time I knew it was ME even before I was diagnosed and told so to the doctors, that soon confirmed it after the MRI and Spinal tap . I was put on steroids infusion for 5 days at the hospital and almost fully recovered.
Now I'm starting with Tecfidera and have a totally normal life... working, running, etc with only issue being that my left leg feels weaker and tires sooner than the right one when I run too much, but let's see what the future awaits for me.
Diagnosis took 6 years but just because I ignored the first release and didn't go through any of the recommended tests at that time.
@henrietta I think I may have your post already. I remember thinking that I liked the title (big Beatles fan!) Will have another read though. Thanks for the advice. I'm thankful I'm getting closer to hopefully getting somewhere to get answers.
Neurologist is ok he’s just there to give you a definitive answer the ms nurse is more helpful with symptoms and there for a port of call if u need it.
@icarri glad medication is helping you. Looks like there are no meds available for ME in NZ. I had to look up ME.
Heading off for now. Exhausted.
Hi, symptoms are not always text book. Plus MS can come and go, or progress quite slowly. Therefore, especially in the beginning, it is easy to miss symptoms. Plus throw in memory or cognitive issues and it can make it hard to remember or convey. My first symptom was pins and needles in my leg. But I only realised this years later. My current symptoms are balance, cognitive and fatigue symptoms. Not so high up on the list, but the ones that disrupt my day the most. I think my GP thought I had a brain tumour and therefore I got scanned. Good luck with treating your symptoms.
My one foot was sticking out funny one day and I really couldn't straighten it. No pain but odd and somewhat affected my gait, obviously. Now, 15 years later, as I am trying out FES they run current to affect certain nerves and one makes your foot stick out like that! I immediately knew they had found the initial nerve impacted. That was the symptom that send me to the neuro and into the MRI for a diagnosis.
For years prior to that I had strange nerve things that were explained as nerve irritation to exercise class or some such. Like when I couldn't lift my right foot sometimes...like to get into a car or occasionally stumbling when running up stairs. Then there was a blind spot in one eye during my second trimester of pregnancy that went away in the third they thought might be ON but now think it was an optical migraine...but for 3 months? we are special...aren't we ;-/
@sarah_williams sorry with ME I meant MS, E stands for esclerosis that is the Spanish word for sclerosis and I’m used to write it that way.
@icarri no worries! I thouhjt that might be the case but also didn't want to assume. Doesn't look like there is as much support for those with ME.
blurred vision, later confirmed as optic neuritis.
@dom1975 I have read of a lot of people having vision issues. The only vision issues I have had are black spots or floaters in my vision and more recently pain around the eye which is very sporadic.
Tomorrow I am seeing a general specialist to try and get the ball rolling with tests. I'm feeling very nervous. I hope I will get answers in the not too distant future.
Hi @sarah_williams I was diagnosed in 2014 and working as a parcel courier. In March I started getting funny feelings in my legs and fatigue which for a fully active man of 42 was strange, this led to a full loss of feeling in my legs that’s when I went to the doctor’s. He assumed I had a trapped nerve so 2 weeks on anti inflammatory went back he sent me to local hospital, one look and they sent me to royal Derby for MRI next day. This led to diagnosis of ms and my legs gave out completely. 18 day hospital stay later I had some feeling in my legs but no skin sensation below the knees ( so if I cut my lower legs I don’t feel it) I can walk now but very slow and laboured. And that’s my long winded story.
We all know stress is a main contributor and in jan 2014 my wife died suddenly (aged 42) and in feb TNT expanded my delivery area to an unreasonable distance as I covered mainly small villages a good 30 minutes apart.
Hello @sarah_williams. I got my diagnosis last December and for me it was a weird time. Throughout last year I had been experiencing weird feelings [a vibrating in the tops of my legs/ my vision going hazy for a time which the doctors thought might have been an eye migraine/ feeling very detached from myself as if I was outside of my body watching/ the soles of my feet were tingly and it felt like I was walking on bubbles and having vision problems with movement - basically as if I was drunk with the room moving after I did]. During this time my dads' health really deteriorated and he was admitted to hospital where he unfortunately passed away. At first I wondered if it was stress physically manifesting itself so I went to my GP for confirmation and was sent for a referral. I was then told that I'd possibly had it already for over 5 years! With everything that had happened I think it took a while for my diagnosis to sink in and even further for me to agree on treatment. After all after my dad passed all my 'symptoms' went so why would I believe it could be anything else?I don't really know what the general symptoms are and have been asked on multiple occasions if I'd had any symptoms before. But if I ever did feel anything it happened for one moment and never again so why would I tell someone about it?
Thanks everyone for your messages. It's comforting as I go through this long waiting game.
@chloec I have had similar experiences. It is hard to describe some of the sensations. I'd had tingly feelings in my hands on and off for ages but a out 2 months back it started happening in my arms, feet and legs. Plus more symptoms. For about 3 weeks it was really intense and I was thinking wth is happening to me?? Sometimes the sensations now can be more like tickle type feelings..sometimes tingly, sometime electric. Recently my limbs feel weak wirh the tingles... Notice it when driving and makes me worry that they could go numb or my feet my slip. The walking on bubbles description sounds familiar too. And just feeling sort of disconnected from my body. It is all so weird.
So many of my different sensations, like you, I have rationalised... And tests for different things over the years always say normal. I know this isn't normal. Then I wonder if maybe I am imagining it all.
I see a specialist tonight and I am going to request mri. Hopefully I will be able to get that done ASAP...maybe even in the school holidays. I am a teacher and we have 2 weeks left til holidays.
I am both scared it might be MS and scared tests will say come back normal because then if it isn't MS what the Heck is going on. From reading things over the last couple of months it really feels like it fits.... Have read about all the things with similar symptoms too. Not a Dr of course but I wonder if sometimes you just know.
@sarah_williams just trust your body. You know you and you know that there is something wrong so make sure you keep fighting for a diagnosis. The only reason why mine was caught was because I was listening to my body telling me something was wrong. The stress of the whole 'trying to find out what it is' won't be helping either, but I'll keep my fingers crossed that your test results come back soon!
I've just has a full MRI scan. Last 2 years it's been chronic back pain, lost my "plumbing". I had to self catheter. Pins and needles feeling. Chronic fatigue. I'm waiting for results
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