Forum

Possible MS diagnosis

Hi All,

for the past 4 weeks i have been having some strange sensations in my right leg, Dead, numb, burning , tingling which has now travelled up to my right arm. my leg feels better but slightly weak. Although i can walk fine, balance, hop etc. i have been in australia for 3 weeks but over the past week my eye has been feeling blurred and having some floaters. when i landed back on Saturday i decided to go to a and e to get checked, expecting them to say it was nothing. However the doctor said my symptoms were that of early MS. my aunt has MS and since he said that (he never mentioned anything that MS in A and E) i have been in shear panic which has intensified everything ontop of jet lag. He said i would need to go for an urgent MRI and i should see my GP on monday (today) to start the process.

i have seen my GP today who said he hasn’t received any notes from the hospital and that he will refer me to Neurology but i could be waiting months for an appointment. i am now so confused and even more worried. The A and E doctor had called southmead and was asking if he should be giving steroids to help straight away, i feel the hospital was really worried and the doctor i saw today didn’t seem bothered.

i am totally freaking out and wondering whether i should go private? i know my symptoms are probably worse now im worrying but i just don’t know what to do with myself.

Any advice?

Becca x

Hello Becca

Was the A&E Doctor a neurologist? And did he do a full neurological examination? If so, you might be able to justify your panic. Although having said that, it’s not until you’ve had an MRI that you could be diagnosed with MS.

Regardless of whether he was or wasn’t a neurologist, your GP is probably correct, all they can do is refer you to the Neurology department of the hospital.

Even if the doctor you saw was right and you were/are showing early signs of MS, an ‘urgent’ MRI is perhaps going a bit far and panicking you a bit too much.

Until and unless you are diagnosed with MS, treatment with high dose steroids is probably a bad idea, just in case it’s something else that steroids would be contraindicated for.

If you can afford to see a neurologist privately, maybe that would ease your mind. Often people see a private neurologist and if there is considered to be a need for neurological testing, including an MRI scan, maybe a lumbar puncture and /or visual evoked potentials, they could then be referred back to the NHS for the expensive tests.

Obviously, there is nothing anyone on this site can do to either say whether it sounds like MS or not. Equally, we can’t say X is the correct next step or Y. But, I would try to calm down the panic that this doctor has caused you.

Even if he was right and the cause of your symptoms is MS, urgent testing is not ultimately going to make a massive difference to any prognosis. Neither is urgent treatment with steroids.

Let us know what happens.

Sue

the only thing i can offer which i am sure of is to avoid stress.

stress in the enemy, it just makes everything worse.

so play your happy tunes, pour your favourite tipple and relax.

it all feels so urgent at this stage but the wheels of neurology turn very slowly so learn how to minimise stress.

diagnosis of ms is not the end of the world, we have all survived to lurk about this forum.

I am with Ssssue here, it seems a bit reckless of that medic to say early MS, they had very little to go on.

If it reassures you any, the MS Diagnosis is a long journey, it is a route through ruling everything else out before ruling in MS. Neurological and Rheumatological conditions can very often present the same symptoms. I had to have ruled out Lupus, Lymes Disease and several other conditions, also I had several MRI’s and Lumbar Punctures and blood tests. I was undiagnosed yet active with MS for 20 years. The best advice is look after yourself, do good by yourself stress, sleep and food wise. Press on and keep on the momentum of understanding what has happened.

If this is your first “attack”, it could be CIS which is an isolated attack.

Keep asking questions and I hope you feel better soon. If there are any questions I can answer please let me know.

Thank you all for your quick replies.

i agree that it was a bit silly of the doctor to throw MS out there without more detail. I think it has been made worse because whilst I was away I googled he I felt and MS and Brain tumour had come up as the reason for how I was feeling so to have a medical professional to say the words MS without no other option. Literally no other option. I have just freaked. My GP today wasn’t like that at all and now I’m confused. I still have the numb dead feeling not so much in my leg but a lot in my arm neck and back but I’m not sure if this is now worse because I’m extremely tense.

My aunt has progressive MS which i know is more of a rare type but it just terrifies me. I feel like I have this big dark cloud hanging over me, I’ve been on this amazing trip with my partner to aus done all these amazing things and within a few hours of being home I’m hit with this. I know you have to learn to get on with these things I just can’t cope very well with the unknown.

I’m just finding it all very distressing and upsetting but also feel guilty for moaning about it when there is people in worse situations.

Thank you all for listening

Hi Becca, Don’t feel guilty. People on the forum realise that you’ve been badly scared and are pleased to be able to offer a sympathetic ear. You’ll be very welcome here for as long as you want. Best wishes, Anthony

Thank you Anthony.

its just the unknown, if I was told I 100% had it obviously I would be upset but you can start to deal with it and I know life goes on and you learn to live with MS it’s just a horrible shock. I realise I’m at the very start of any sort of diagnosis but I’m just terrified.

My sister recently went for an eye test and ended up being rushed into hospital with a suspected brain tumour now a few weeks later this is happening it’s all a bit much.

I am hoping everything is just going to stop but every morning I wake up and it’s still there, just have this gut feeling it is MS.

Side note, with my eye it feels blurred and almost like something is in it, but my eye test and eye health check yesterday showed everything was fine and healthy. If this was a symptom of MS would it have shown at an eye test

thanks

Becca

Hi Becca

Your eye test would have shown up optic neuritis (if that’s what was causing your blurry eye).

Don’t forget that our brains can fool our bodies into real symptoms when we’re worried. Just because it’s stress and worry causing you to feel peculiar, doesn’t mean the feelings aren’t real. If that’s what is at least partly affecting you.

Your aunt having MS doesn’t make it all that much more likely that you’d have MS. (Irrespective of variety of MS.) Have a look at https://www.mstrust.org.uk/a-z/risk-developing-ms It shows that the risk of you having MS because of a relative with it is fairly low. Even if it was a parent, it’s only about a 1 in 67 chance.

I do think it was irresponsible of the A&E doctor to chuck the idea of MS at you. No wonder it’s stuck there in your head. If you don’t feel that you can wait for an NHS Neurology appointment, then see if you can find a local private MS specialist. Preferably one who also has an NHS practice, in case s/he wants you to have investigative tests which could then be done on the NHS.

Or, if you are starting to feel better, and can manage to put MS out of your mind, or to the back of your mind, wait until the NHS appointment. In which case you’ll at least know if you get any other symptoms in the meantime.

And don’t worry about wasting people’s time. You’ve had real symptoms that sent you to the hospital, and have been told MS is possible, so it’s sitting there in your head. Scaring the pants off you. We do understand, and don’t mind answering your questions if we can.

Sue

Thank you Sue.

I just cant stand this feeling of the unknown. It completely blows my mind that these silly feelings in my arm and leg could be something like MS. I know i need to try and stay positive until ive had my tests but i just cant help but feel like this is what it is.

I’ve only been back in the country 3 days and ive seen the doctor every day! i just cant stop crying, i cant sleep im terrible. i keep googling everything trying to find other possibilities but it just seem as though it all points to MS. I also keep reading stories of peoples first symptoms and think wow mine in worse, is this going to get better? will these feelings go away?

all sorts have been going through my head like will i have children, will i get married, my boyfriend will leave me, i wont have a house i wont be able to work.

im just so frightened.

Becca xx

Hi Becca,

Just wanted to say Hello and that you’re not alone! I’m feeling exactly the same, though my symptoms are different, Im also currently in limbo and waiting for a neuro appointment on Friday but my GP has said she thinks its MS.

I’ve also been asking myself the same questions and its really scary! (Lots of cry and not much sleep on my end too!)

I had a look at some of the video on MS Trust in which people talk about their experiences and its helped calm me somewhat, maybe this would help?

Fingers crossed for you :slight_smile:

Leanne xx

Hi Leanne!

thank you for your comment! I find this forum really helpful

ive just booked a private neuro appointment today but I cant been seen for 4 weeks, there is a shortage of neuros in my area! but I haven’t had any scans yet have you? I want to know what it is but I’m terrified of the diagnosis! It just seems as though doctors say all these possibilities but in the end it’s always MS!

i have never had these feelings in my arm and leg before but it’s not stopping me from doing anything as such, it feels weaker now but it’s not , if that makes any sense! I’m not sure if something is getting worse or if it’s because I’m worrying about it! I know the mind can do wonderful things and create all sorts of problems! I’ve struggled with panic attacks and anxiety and you can almost bring on a symptom if you think about it for long enough! It’s the same with my eye it’s not like I can’t see I can see it’s juat a feeling that there is something in there and I have floaters! It’s a really strange feeling! But then again I’m not sure if this is now worse because I’m panicking and I’m tired, I’ve only been back from Australia for 3 days!

Xx

Becca,

“Floaters” or dark specks that move around in the eye are perfectly normal.

The older one gets the more common they are.

It happens to every one all the time and it’s nothing to be afraid of.

Anthony

Hi Becca,

I found the forum today and I feel so much better, I was starting to think I was going mad!

4 weeks might seem like a lifetime away but it goes really fast, I was on the NHS list for 6 weeks, then my appointment was cancelled in error, so frustrating! My new app is on Friday, I think ill go private for the tests they recommend (if any) to try and speed up getting some answers. Ill keep you updated so hopefully we can help one another with it all :slight_smile:

Has your doctor checked your B12 levels btw? A low b12 can mimic MS so its always worth checking!

You definitely sound like you need a cup of tea and to curl up on the sofa for a while, self care all the way! Hope you feel better after the jet lag passes :slight_smile:

L x

Hey Becca, Leanne is right - 4 weeks will absolutely fly by! I was told back in Dec that I had lesions and had to wait 13 weeks to see the neurologist. The first few weeks of waiting for the appt date to come thru were some of the hardest, and some days were worse than others, but suddenly 13 weeks were up! It’s absolutely terrifying to think something could be seriously wrong with you, but I’m sure others have said its best to try and remain calm. Stress and worry helps no one (easier said than done, I know). But hang in there and hopefully you will get some answers, and maybe even some reassuring news when you see he neuro! Fingers crossed for you!

Hi Becca. As people have already said 4 weeks will come round quickly. You have taken action in getting things looked at, so now as hard as it is you have try to put worry aside, worry causes issues as well. Yes some of the symptoms may seem like ms but the A & E doctor didn’t do any checks did he, from what you said. It could be anything. They have put this seed in your head, unfairly in my opinion (for what it is worth). You have said that daily activities are not effected, so try and be as positive as you can. You are under added stress from your sisters recent health scare, someone in work was diagnosed with blood cancer ( sorry can’t remember type) after a routine eye test picked something up and that was just after my mri but before the results, the mind worked overtime- but it did me no good. What I am trying to say is that worry in this situation is natural but unhelpful. We all understand on here the roller coaster ride but carol is right the wheels of neurology turn slowly - you have done what you can, and that’s all you can do. Best wishes.

Hi Leanne

How are you feeling today?

i have blood tests coming up on Monday, its sounds so silly but i hope they find something but im expecting that they wont.

I met with my Mums friends daughter that has MS last night, she was diagnosed when she was my age too (27), She had Optic Neuritis when she was 21 and then her MS was diagnosed after she had her second child at 28. She did put my mind at ease slightly as she does live a ‘normal’ life and has had around 4/5 relapses. I had my eyes tested on Sunday and all was ok , although i am still having this weird blurry sensation. Its my eye that bothers me the most. I have woken up this morning and now my eye is quite bad, its very blurred and patchy but again not sure if this is because im thinking about it or it is actually a change. As im sure you can gather im literally driving myself loopy!

Becca x

Hi Everyone,

i am so grateful for you all to take the time to reply to my posts, it really is comforting.

I met with my Mums friends daughter that has MS last night, she was diagnosed when she was my age too (27), She had Optic Neuritis when she was 21 and then her MS was diagnosed after she had her second child at 28, she collapsed and had no sense of balance/ perception. She did put my mind at ease slightly as she does live a ‘normal’ life and has had around 4/5 relapses with no permanent symptoms as of yet. I had my eyes tested on Sunday and all was ok from what they could see , although i am still having this weird blurry sensation. Its my eye that bothers me the most. I have woken up this morning and now my eye is quite bad, its very blurred and patchy but again not sure if this is because im thinking about it and what Michelle told me last night or it is actually a change. As im sure you can gather im literally driving myself loopy and now am thinking of going to the opticians again after work.

i really trying to stop my tracks and think positive but i cant seem to pull it together. I feel so stupid. positive note being that my legs and arms feel a lot better today. I know MS isn’t a death sentence and you just need to adjust and people can stay active and social but im just frightened. People also keep saying it could be something else, but what? what else could it be? it seems as though people that have had other diagnosis always end back at MS, but then i guess people who didn’t have MS and are now ok wouldn’t continue to post on forums such as this one.

i have always looked after myself i don’t really drink, don’t do drugs, i don’t hurt people i just don’t understand why! I also feel really bad for my parents who are both fit and healthy 55 year olds who are now facing having both of their daughters with lifelong conditions. its just not fair.

Becca xx

Hi Becca. The process makes you feel like you are going loopy. Stay as strong as you can. Optic neuritis can be caused by loads of illness, some quite benign others not so. I don’t really what to list them here, as, Hope you take this the right way, you may start thinking you have one of those! All you can do now is wait. I now it’s crap, very fxxxxx crap but hang in there. As to your last point, again, don’t take this badly, you may have noticed I’m straight talking, but I can relate to this. I may be approx 20 years older, I think, than you but went through your thought process, i don’t drink anymore, and only lightly for years before , okay when I was a student I enjoyed a few beverages but not to excess, honest! I’ve never done drugs, up until my thirties I was classed as fit as an endurance althete ( rapid decline here I admit, but still exercise). My sister died when she was 38 ( 6 years ago) so like you are expressing my parents who are now in their early 70’s have lost the youngest daughter and now know their other has been diagnosed with ms. Not exactly great, or what anyone in live would wish for, but life is like that. You have to climb those mountains to see the views, make the most of bad situations. Don’t get me wrong, I get down, angry, sad all sorts of emotions on days, but we have no choice in live but to deal as best as we can with the cards we are dealt in live and as best as we can in that moment in time, so some days I might not get out of bed (non work days!) others I think what a wonderful world we have. I hope I haven’t come across as all preachy, and I am most certainly not a mega see the positives in everything.