Last reply 1 month ago
MRI scan soon! How did you find out?

Ok, so I was having allot of symptoms which started around the beginning of April and they started to fade away around mid June… it was the most painful and uncomfortable time of my life, I just didn’t feel myself at all… anyway I saw my doctor multiple times and almost felt like the doctor wasn’t taking it seriously… so I went to see another doctor, he thinks the problems I have been having are neaurology… I had done allot of research by this time and I mentioned it to him, I asked if it could be ms… he said it could be and also said that’s what he was thinking through this whole thing but tried to reassure me. I am positive i have ms…. it’s just a feeling i have. So I was wondering how did you find out you had ms? What were your symptoms? How long did it take to diagnose? And I was also wondering if anyone could tell me what it’s like having a mri on your brain? I think that is what’s terrifying me the most!

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mlgilber1
4 months ago

Hey! I’m newly diagnosed and for me it took a couple of months to finally get a diagnosis, the doctors I saw at first did not take it seriously either. Finally after being hospitalized where they did another MRI on my brain and also included my spine this time and a spinal tap they diagnosed me.

I’ve had more symptoms than I can count and experience new ones all the time! It started off with both my legs feeling numb and tingly and my vision blurring. Now I have also experienced what feels like my skin being on fire, intense itching, tightness in my body, cognitive issues like memory loss, sleep problems, urinary retention, body twitching and jerking, back pain, and I’m sure there are others that I just can’t remember right now lol. There have been times where one of my hands and half my face have gone numb and times where i can’t grasp things very well. Over the span of just a month I was hospitalized again because I had an intense relapse and could no longer feel my toes on my left leg and I could barely move my leg. I had lesions scattered all throughout my brain where before I only had them in my spine and they found a new one in my spine that was 3 times bigger than the normal lesion so I’m also being tested to see if I have another autoimmune disease in addition to the MS and she thinks my ms is an aggressive case. A lot of other diseases mimic ms and vice versa so it is hard to diagnose ms. I know that typically if they do find lesions then they go on to do the spinal tap.

An MRI is like a big tube you go into and it can be difficult for people who are claustrophobic because it’s a tight space that you’re enclosed in, but if you have this problem like I do, they can usually prescribe you something to help you relax beforehand. The MRI machine is extremely loud and noisey. Also, they put almost what’s like a little cage over your head and face which also takes images and helps so you don’t move. You can’t move during the MRI because it will mess up the images and they’ll have to start over. I know my brain MRI took 20 mins. When I did an MRI on my spine, and then one on both my spine and brain it took about 2 hours but they did it with and without the contrast. An MRI doesn’t hurt at all, just uncomfortable because you’re lying flat on a hard surface. They do give you a button to push if you have any questions or issues while you’re in the machine. I hope this helps some and that everything goes well. If you need anything feel free to message me anytime! Best wishes!


marcyg921
4 months ago

Hi
The journey towards a diagnosis for me was a long one but I still remember it like it was yesterday. I woke up on Christmas morning with a weird feeling down my left arm and I had no feeling in the fingers of my left hand. I went to the doctors about this and it got diagnosed as a trapped nerve. A few months later I started experiencing more symptoms like numbness down the entire left side of my body, was limping very badly and it also seemed like I was walking with a heavy leg which left me with balance issues, had bladder issues etc. Some of these did heal (or got better) but after 5 months my hand still hadn’t healed (could barely use it) that I knew that something was wrong so after seeing my doctor again (for the third time) that I was put forward to see a Neurologist.
When I first saw the Neurologist he asked me some questions and did some tests and he thought there wasn’t anything seriously wrong with me but to be certain he put me forward for an EMG test and an MRI scan. I had my EMG test done first and it was at this test I knew something was wrong because when he tested my right arm when relaxed, the computer made no sounds but when he tested my left arm when relaxed, the computer made all sorts of noises to show that even when relaxed my arm was still very active when it shouldn’t be. The doctor said I likely had something called Dystonia but I would need to see what the results were of my MRI.

A few days later I had my first MRI.

The MRI went much easier than expected but it really depends on how you handle being in enclosed spaces. I’m usually fine which is why it didn’t bother me but the machine is loud even when you have music playing. Anyway a few weeks later my Neurologist wrote back to me saying the results of my MRI scan showed multiple lesions on my spine and he needed to see me. At this point I knew the diagnosis of MS was coming. So I saw my Neurologist again and he said he wanted me to have another MRI scan but this time on my spine and brain and have one with contrast but I also needed a lumber puncture. I did the MRI (again not that bad just very long (took over an hour this one)) and did lumber puncture which I was absolutely terrified about doing but apart from a saw back and a slight headache for a few days, again went fine. The next month I get the results saying they found lesions on my brain so he was putting me forward to see another Neurologist who specialises in diseases like MS.
So November comes around, 11 months after my first symptom, and I see my new Neurologist. He looks at all my test results and asks me to tell the same story I’m telling you and asks me some questions and does some last final tests and officially diagnosis me with MS.
The reason why Neurologists don’t just diagnose people with MS is because it’s such a complicated condition and can be very similar to a lot of other conditions and let’s be honest, they must hate it when they have to do it so no doubt they want to make sure it isn’t MS and want to be 1000% certain it isn’t anything else before diagnosing.
To answer your question about MRIs, honestly they aren’t that (though I don’t know how claustrophobic you are) the worst thing about them for me is just how long they can be. My scans varied from 20 minutes to over an hour but I have on more than one occasion fell asleep during my scan. For a brain MRI they’ll put a cage over your head so they can take pictures of your head and you also need to keep as still as possible but if you are claustrophobic and start to panic they do give you a buzzer so just press that and they’ll stop it and bring you out until you’re ready to continue.

Best of luck with the scan and I’m certain you’ll be fine but just message me if you have anymore questions.


stumbler
4 months ago

Hi @jade_marie_bbbeautyox and welcome.

Now, what the **** were you doing posting on this forum at that time of the morning? 😉

You did the right thing going for the second opinion. GPs can sometimes make an incorrect diagnosis of hypochondria!! Although, using Dr. Google to self-diagnose is not a good idea. You can scare the pants off yourself!

The only people who are qualified to diagnose MS are Neurologists. They seem to be much in demand, so there may be a wait for an appointment. Unless you are in a position to go private for the initial consultation.

Symptoms of MS are many and varied. There isn’t a common set as no two people suffer the same symptoms with MS.

The route to diagnosis can also be many and varied. It could be quite quick in a matter of weeks or it could take years, if you are unable to effectively overcome the hypochondria barrier.

MRIs are a non-invasive procedure. Fear of the unknown is natural and claustrophobia may be an issue for you. Consider it similar to being on a noisy sunbed, without the bright lights. There’s some factual details here:-

https://www.mstrust.org.uk/a-z/magnetic-resonance-imaging-mri

and a personal viewpoint here :-

https://www.mstrust.org.uk/understanding-ms/diagnosing-ms/diagnosis/what-it-have-mri-scan

Hope this helps


lightning87
4 months ago

Hey!!

For me my symptoms started as a couple of numb & tingly fingers/side of hand. The first GP thought it was carpal tunnel so off I went for nerve conduction tests.

Then I got l’hermittes (vibrations down my spine) and thought nope this isn’t right so went back to another GP who, although said he didn’t think it was MS, would refer me to neuro as could be a trapped nerve in my neck.

I knew within myself it was MS.

Saw neuro who said I seemed well, could be a nerve but arranged a MRI to check. Results of scan was 2-3 lesions on my brain and one on my spine. Said it could have just been a one off attach (CIS) or potentially MS but they had to do another scan in a few months to see if there were any more lesions. This was when I got upset thinking sh*t this is real, my symptoms are real.

So second MRI happened a couple of months later. Limbo land was awful, I’m not going to lie. Results came back that although there wasn’t major changes there was one new area of inflammation so the neuro could diagnose me with RRMS. It was a relief for me tbh and I haven’t really been that down about it since as after the initial shock of something being in my brain I got used to the idea and knew it was MS.

I still have a couple of number fingers but the l’hermittes has gone. I get a vibrating foot occasionally but ok apart from that for now.

I won’t lie and say MRI was pleasant, it was quite claustrophobic. But I think it was because I didn’t know what to expect. Second time round was better. Just shut your eyes 🙂 it is a little noisy but it’s only for 20 mins or so, you will be fine.

Hope you are okay and this helps in some way. Feel free to PM me if you ever want a chat.

I’m 31 and was just diagnosed last month x

Second MRI done


lightning87
4 months ago

Ah my phone! Numb I meant and I don’t know what I was writing about second mri done lol x

Thankyou for all the reply’s… hopefully I get some answers on Saturday but to be honest atm it would be a releif to get a diagnosis! I’m sick of being in limbo and feeling these things but not being able to explain it! To be honest I just want confirmation that I am actually feeling these things and I’m not just going crazy! Xx


rotherhamdave
4 months ago

Hey, I started with my legs feeling tired n having the odd little spasm. Then the balance was starting to go. So it was time to go to my gp cos it was worrying as I’ve always been fit n healthy.
He couldn’t really diagnose it so he referred me to Hospital to see specialists. That’s when I was crapping myself!! Is it a tuma or the big C? After numerous blood tests, ct scans and mri’s I was still not given an answer.
Finally it had to be the lumber puncture. An answer at last, MS. 6 months it had taken. SPMS. Different symptoms started develop slowly e.g hand tremors when writing or picking things up, fatigue, muscle stiffness. I don’t have pain but I answer to all, that MS is a bloody pain!!
I don’t work no more, I’ve had brilliant help n support from being diagnosed 2014. I now walk with an arm crutch.

As the answer to the mri. Don’t be worried about anything. They put a needle in ur arm so that dye that’s inserted is picked up by the scan. U just lay there with a mask kinda thingy on for roughly 30mins. U have to try n stay still n that’s it. BORING 💤.


wendyhills
4 months ago

I was diagnosed in April this year and had a few MRIs one recently on brain neck and spine. It was scarey as I’m claustrophobic but I was given lorazepam which chilled me out and the experience was not as bad as I expected you just lay there like an X-ray bit noisey they played music for me. I hope your experience is like mine. Let us know how it goes please. My first symptoms were waking up with strange numbness and loss of sensation from waste down. Wasn’t able to get a diagnosis until results of brain MRI so after that you should have answers in the meantime there’s plenty of lovely people on here willing to offer advice and support including myself. I’m so happy I found this forum good luck 🤗


peterfrancis
4 months ago

Hi jade_marie

I had been having symptoms such as lack of balance, difficulty walking, feeling tired, vision problems, issues with concentration etc.

I started to develop a shaking/tremor in my left arm which progressively got worse, so made an appointment at my Doctors.

The Doctor examined me and referred me to see a Neurologist at Hospital.
Saw the Neurologist who also ran a few tests, he immediately had suspicions that it could well be MS. He made an appointment for to go for an MRI Scan, a few weeks later I had an appointment with a member of the Neurology Team who had looked at the MRI results
He said that the scan heavily suggested MS and that the amount of Lesions present was the most he had seen in someone of my age. He was unable to officially diagnose me but he was almost certain that it was MS.

So I was referred to a second Hospital that has a better Neurology department to see the Consultant there, he diagnosed me with Rapid SPMS.


mightymichymac
4 months ago

I’m still in limboland… I think! I think still technically have CIS as have only had one relapse (optic neuritis) but still awaiting the results of my second MRI which I had done a around 6 weeks ago (wow didn’t realise it was that long along – no news is good news I guess 🤣). My first MRI showed 3 lesions and one of which enhanced so in my eyes I have MS as not sure what else it could be! Have been requested to have a LP but it’s not really working out for me that well after many attempts (waaaay too
Much anxiety there!)

The MRI was interesting! The noises are very strange but not alarming at all. I nearly fell asleep during my second one as I was super comfortable! My first symptoms started in sept last year and had my first MRI in dec – although the doc at the local eye casualty mentioned MS in sept so it’s aleays been there since I guess.

Good luck for tomorrow! The MRI is fine unless you are a bit claustrophobic. But I’m sure there are nice relaxing drugs available for that! 🤪


mightymichymac
4 months ago

Oh I forgot the absolutely WORST THING about having an MRI…..the sudden need to itch something but you have to stay still!! It’s hell for 45 mins when you have an itch on the end of your nose!


peterfrancis
4 months ago

@mightymichymac

Lol, yeah the need to scratch your nose at the most awkward of times, I know it it too well.


grandma
4 months ago

Dear Jade Marie, Limboland is the worst place to be, the MRI is nothing to worry about, keeping still is the biggest problem, but can I suggest a talking book, cos it’s the best way to lose yourself, music is also good but nothing too rousing, cos it’s difficult not to jig about. I do hope that you get some answers, and I know what you mean about almost being relived if it is ms, cos you’re not going nuts with all the strange symptoms that are going on. Please ask us anything somebody will always know the answer. Keep smiling😍

Update-
I am so angry and upset atm….
Went to my neurology appointment and they did some tests…. anyway turns out I wasn’t booked in for my scan! So now I have to wait another 4 weeks of worry…. I was just so ready for this to be over and find out what’s wrong. At the moment I’m feeling fine apart from the constant eye twitch and pins and needles… but my other symptoms were going on for around 2 month and it was the worst time of my life! The neurologist doesn’t seem bothered and seems to think it’s just stress! I’ve lived with stress my whole life and it’s never made me blind or lose all sensation in my leg and my arm! I feel like yet again I’m not being taken seriously. Sorry for the rant I’m just so frustrated with everything right now x


grandma
4 months ago

Rant away that’s what we’re here for. I’m sorry you didn’t get the MRI bummer, don’t they realise what a major thing it is for us, it’s so everyday for them that they don’t see it from our side,I had to threaten the junior doctors with legal action if they didn’t give me steroids quickly I usually like my sight during a relapse and obviously I don’t want it to become permanent, they wouldn’t give me steroids until I had an MRI and there was a 4 day queue. As Stumbler has previously said ‘it’s the squeaky wheel that gets the oil’ make a nuisance if yourself, keep phoning, get on to your ms nurse, try anything yo get things moving.😍


stumbler
4 months ago

@jade_marie_bbbeautyox , don’t let this situation wind you up.

You do need to be your own advocate, so if you don’t get the scan appointment in a couple of weeks, get on the phone. Just always be polite.


miller
4 months ago

Hi im 32 was diagnosed at 30 but my doctor belives iv had it since early teens after taking some of my medical history into consideration i suppose it all makes sense now when i look back at certain points


lightning87
4 months ago

Rant away hun. No wonder you feel frustrated! But it’ll all be done and dusted soon enough. Try your best to put everything to the back of your mind for now – worrying will just make things worse. Easier said than done I know.

Hope you get an appointment through soon xx


chezn87
4 months ago

Hope you get answers soon I can only imagine how frustrating this is for you. My main symptoms that I ended up admitted to hospital was the double vision I was so terrified I had a brain tumour, I got the mri and it showed the inflammation, ms never even crossed my mind, I got the lumber puncture and was diagnosed with ms on the 1st may. I’ve had a few symptoms since then, numbness from my toes to my waist, weakness, tingling, falling, been on steroids once which I don’t know about others, gave me a whirl of energy while on them. Mri isn’t too scary if it’s your head their looking at they only put half your body in plus you get headphones and get to listen to what you want it’s honestly not too scary, hope you get answers soon!


mamawals
4 months ago

I’m sorry you have to wait. That must be very frustrating. For me, I had symptoms for about 10 years and probably five “relapses” before being recently diagnosed this spring. At the MRI they didn’t tell me the results but the radiologist looked worried and asked if I was seeing a neurologist. Honestly I thought they had found a brain tumor and I was convinced I was dying for about a week. I was diagnosed off my medical history, current symptoms, and MRI that showed a significant number of lesions. And nothing has changed. I’m still waiting to start a DMT, I still have symptoms, life goes on. So diagnosis gave me relief that it wasn’t a terminal condition but that’s it so far!


mamawals
4 months ago

Oh and about the MRI. Close your eyes before you go in the machine and think about your happiest, most relaxing memory while breathing slowly and steadily. I imagined holding my baby. I’m claustrophobic and I’m pretty sure I would have flipped out if I opened my eyes!

Update-
I had my scan today… I really didn’t like it however it wasn’t as bad as I thought aulthough I felt like I held my breath the whole way through. Anyway they couldn’t tell me much… they are sending the results to my doctor… but they told me that they found something but told me to try not to worry. I am so nervous! Wish me luck! X


jonas1272
3 months ago

Hi,
I had to wait 18 months for a definitive diagnosis and that was after 3 MRI’s numerous other tests and a lumbar puncture ( very very unpleasant ) I think theres not enough known about MS therefore most doctors are very careful about a diagnosis until they are 100% sure ( this was my experience )
Being in Limbo is the worst feeling and the not knowing is horrible so i feel your distress, however try to concentrate on staying positive, you will get an answer eventually, its a long and emotional road and even then once you get your answers the journey doesnt stop, BUT !! There is tons of support and fellow MS sufferers who will help /advise and support you 🙂
Stay strong 🙂
Personally i think we are all superhumans to be able to adapt / manage and continue our lives with this horrid disease 😉


buitenmus
3 months ago

I Guess I had the most Quick diagnose: after a day. I was feeling out of Balance for 2 weeks but they thought It was the flu/low bloodpressure/tiredness of having a newborn. But One dat My Balance was complete off, the letters on My screen started dancing, felt like the World started Turning. SO ambulance from work To hospital, a ct (I bumped My Head in the morning), An MRI and a few hours later they told Me I had a chronicle disease and needed To Be hospitalised and talk To a neurologist. The next day the neuro told Me It was probably MS. I had a LP and 2 weeks later I had My final diagnose. On the MRI they saw a lot of legions SO apparently I had MS for some time. It finally explains My constant tiredness.
An MRI is mainly a lot of noise and laying still in a boring environment 😉


lightning87
3 months ago

All the best hun, that is pretty crap to say they found something but didn’t say what! Frustrating!!

Hopefully it is something of nothing and if not, well we are all here to support you xx

Update-
Still no MRI results aulthough I was told I will recieve a letter very soon…
also my symptoms are back….
I’m having blurry vision, I am in allot of pain and the fatigue is unbelievable… I’m so down at the moment…, mostly because of being in limbo


mlgilber1
1 month ago

I’m so sorry this has been taking so long. Thanks for keeping us posted. I’m always in a lot of pain, it’s my worst symptom even though all of mine get bad. Has your doctor at least given you anything to help with your symptoms? I hope the letter comes soon! I would call your doctor and ask about the results. Feel better and hopefully the letter comes!


lightning87
1 month ago

I’d give them a call too although they aren’t the quickest. I waited weeks and weeks for my results. It’s not nice being in limbo land.

Remember though some symptoms could be caused by stress or anxiety so try not to put it to the back of your mind, as hard as it is I know.

I hope you get the results soon so you can move on xx


stumbler
1 month ago

@jade_marie_bbbeautyox , the Neuro’s secretary is the person to call up. And remember, politeness wins the day……. 😉

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