How I got MS

Everyday living
1

Hi there, I have worked out how I got MS a year ago. During my forst big attack it started as vertigo I had ear symptoms. I thought one symptom felt like something in my left ear was a bug and I washed my head and ear. Then I got a VI nerve palsy. The GP referred me as non-urgent routine, he got the care pathway wrong as it should have been urgent, and I found a cancellation appt on the choose and book system for 13 days later. During this time I began feeling not myself and was having night time anxiety attacks about my house, felt very stressed. I didn’t think to go to A&E, go back to GP or research my symptoms on web (it was really odd and not like me), no family or friends near by to say I don’t seem right. Then I finally get to see the neurologist 13 days later, its been so long and i don’t think about telling him about the ear symptoms. He would have had to be specific with me about my ears for me to tell him. He says he will do an MRI as urgent but within 2 weeks. Mum chases MRI then this is brought forward two days.Two days before MRI I have loss of conciousneess and other night time symptoms. I visit neurology out patients again the next morning but secretary says no one can see me as its an outpatient clinic, I go home and not A&E. I don’t know if I was confused or just gave up trying. I Get MRI result by phone two days later. Then as soon as I begin steroids three days later it goes to my spine and I have sudden loss of strength on both arms and loads more symptoms.

I am gutted as if the GP did his job right it may have helped - ie stronger dose of streroids sooner. Also if I had not thought my ear symptoms were a bug then I would have returned to GP to tell him of them. I was so busy with uni stuff and was not feeling right.

I complained to the GP that he should have referred me as urgent and he replied saying if I was concerned I should have returned to him. That made me think, I was unaware of my symptoms getting worse even though it went to both eyes and I was feeling worse. I had lack of awareness. What a complete mess. And for the last week I have had a sensation on my leg like its sesitive and can’t have anything touchng it. So I definately have MS now. I have been unwell too for the last week sneezing etc. Am seeing an ENT abot my ear symptoms.

2

Nobody knows how they got MS! So far, medical science does not know how anybody “gets” MS, although it’s at least clear it must be a complex interplay of genetic and environmental factors.

A doctor cannot stop anyone getting MS, who’s going to get it. Steroids basically treat symptoms. They don’t alter the course of the disease, and being prescribed a higher dose sooner wouldn’t stop whatever’s going to happen still happening.

You have nothing to blame your GP for, and also no reason to blame yourself for not going back sooner. It could NOT have been stopped if you’d acted sooner, and certainly not by a hefty dose of steroids, as you seem to think.

It’s quite clear from your repeated posts on similar subjects (I’m not going to embarrass you by naming you, but it’s obvious who you are), that you are very confused regarding the basic facts about MS - what is known about it, and what you can expect as “normal”. Do you have an MS nurse who could go through some of the basics with you, such as how they can be confident of your diagnosis, why an earlier dose of steroids wouldn’t have made any difference, whether you are correct in believing yours is an “unusually” severe case, and so on?

I get the impression you are spending a lot of time on Google, but only getting more muddled. I think you mentioned at one point you have a counsellor or therapist of some sort? Have you discussed all this with them?

Please stop the Googling! If you want to know the facts - which is understandable - start with the specially produced articles here on this site, which will all have been researched and checked for accuracy. Also, if you want reassurance that many of your symptoms are really common, look no further than the other stories here. For everything you’ve reported, you can probably find at least ten other posters who’ve had something similar , and very few of them are doubting their diagnosis over it - or, conversely, thinking their MS is a particularly rare and extreme form.

Even what you refer to in other posts as a “stroke-like episode” seems only to have lasted a few seconds. I have very occasional episodes when I look at my watch, and can’t read it, as if it was made by aliens, or can’t remember where the light switches are, in the house I’ve lived in for over 20 years (and the light switches have never, ever changed). I’ve also been in a place I know well, but suddenly couldn’t find my usual shortcut home, and had to walk all the way round the long way!

I don’t know if these strange happenings are a direct consequence of MS, or just a reflection that I’m stressed, preoccupied, or fatigued. I haven’t genuinely forgotten the things, because they do come back - and usually within seconds - except in the case of the missing shortcut, which I’m confident I could find without a problem, if I walked there today, but couldn’t find that one time. I think I’d just approached it from a slightly different direction, and panicked because it didn’t look the same.

But anyway, all that’s an aside. Please talk your concerns through with your counsellor or MS nurse.

Tina

3

Hi Anon

Im no expert by any means and learning everyday , even though ive been unwell for 14yrs its only in this last month ive been told its MS , my advice would be to read on here and ask the folks questions as they are very knowledgable and also a great comfort , my neuro 14yrs ago said it was parkinsons & dystonia , i dont blame him i feel for him as he has loads of people to see and its human nature to make mistakes , the only Dr i blame is the 1 that said i had conjunctivitis when in fact 4 days or so later i went totally blind in the left eye as it was ON , i dont hold a grudge against her as the outcome would of been the same but i think she needs retraining to maybe be correct the next time she see’s an episode.

I went through the anger and blame feelings many many years ago and perhaps thats why im so laid back and accepting of it now as even though the names have changed several times its the same feelings and symptoms and they have got worse , natural progression i think.

I did an anon post sometime back now asking about bowel issues & MS as i felt too embarressed to ask and the replies over whelmed me somuch so in my reply i used my name.

Im learning all the time by reading folks replies and topics and the publications and i gotta say the folks on here are awesome both with their help and suggestions and most if not all are an inspiration

goodluck and all the best i hope something eases for you soon

regards Sheep

4

Look guys and Tina from your repeated posts being the Forums MS specialist… I actually felt paulsating n my ear. fullnesss and pressure, warmth and something moved in my ear… I’m sorry you guys are not willing to accept it. Thats ok I am being referred to an MS specialist. I’m sorry but you no idea what I went through and you cannot begin to imagine it -it was awaful. It’s my nervous ssystem and body and i’ve never had neurological problems before this. I don’t know why it bothers you so much… .

You really should stop trying to diagnnose other people on this site. Tina You always seem to say everything is MS. Its not right that you diagnose everyone and people who do not have MS get many symptoms - the way you put something once on a post say its probably your MS so that person thinks its MS and doesn’t get it checked out. They finally get it checked out and its nothing to do with MS…

Like I said I blame the GP for not referring me as urgent as that is the correct pathway for double vision of any kind straight what ever the reason for the double vision.

I came on this forum for support not for people to tell me to stop googling.

5

Hi, Don’t beat yourself up about it. There is a line of thought that suggests by the time you develop outward symptoms of something like MS or Alzheimer’s, you’ve already had it for up to 20 years. One theory is that most people suffer from non-celiac gluten sensitivity. The amount of gluten in today 's wheat is 40 times higher than 50 years ago. The gluten is thought to irritate the gut lining and cause Leaky Gut Syndrome. We then go on to develop whatever illness we’re predisposed to. Your episode was possibly the trigger, the straw that broke the camel 's back. Who knows for sure? But I believe the food chain has a lot to answer for. Heather

6

I have certainly not diagnosed or attempted to diagnose anyone on this forum. You have been diagnosed with MS - so you tell us - but definitely not by me! If you also have something else unrelated, that is hardly my fault, and perhaps you should look into a forum especially for that, since it’s unfair to expect people with MS to be able to discuss other conditions in any detail. This forum is about MS, and that is what most here have, and feel best equipped to talk about. I’m sorry if you have another condition too, but I still don’t see how that means MS might have been avoided if your doctor had acted sooner - which seems to be your gripe. MS, being a chronic condition, is NOT regarded as urgent, in NHS terms - precisely because it couldn’t be stopped by acting any faster. There is no point treating something as an emergency, if it wouldn’t affect the outcome. All it does is divert resources from real emergencies - cases where prompt action might have changed things. Non-urgent doesn’t mean non-serious. Of course MS is still serious, but treating first symptoms as a medical emergency wouldn’t have meant you’d have escaped without getting MS. So what is it you are “gutted” about, exactly? If you think different actions by your GP could have stopped you getting MS, then you still don’t understand MS. It’s not your doctor’s fault, but it’s not your fault for not being more persistent, either. Nobody could have stopped you getting MS. I do agree with Heather that by the time you have symptoms bad enough to go to the doctor’s, it’s likely the internal processes that give rise to MS have already been underway for some years anyway. So a delay of days or even weeks at that point isn’t going to make a huge difference to your prospects. It’s not like a tumour, and missing the window to operate. If you have a separate ENT problem, responding more quickly to that wouldn’t have affected whether you got MS, either. Here is one place other people HAVE had painful, disabling or frightening things happen to them for no reason. So yes, most of us DO have an idea what that feels like. And even knowing the reason doesn’t stop them being painful, disabling or frightening, but trying to learn about them, and understand what’s happening can make it seem a little less scary. Tina

7

Mate, I don’t know know anything about your history on here but you’re coming across like a right arse by attacking posters who don’t agree with you.

8

I do believe that the trouble with being diagnosed with MS is that after that,some doctors,gps etc do then go on to presume everything is then related to MS.I presumed in my naive way that getting in to the system would make it easier to get help with other problems.

The amount of stories of other peoples MS proves to me that there are other conditions which can be running along side eg thyroid,fibro,circulation issues and many more.Pinning everything to MS is surely a dangerous thing.

9

Hi anon,

Tina is right - nothing your doctor could do would have stopped you getting MS. And also no-body knows how it happens, regardless of the timeline you have.

Excessive googling should be avoided - check other posts. You are not the first to do it and very few find it useful.

And you may think that no-one understands your symptoms and how bad you feel, but I very much doubt you will have experienced stuff that is unique. MS symptoms are so varied that some-one on here will have had something similar, that is the point of forums like this. Everything Tina has already told you is very valid - the woman usually makes sense

Take care - having MS is not the end of the world - it just needs a little tweaking.

JBK x

10

I think Tina’s advise was very good, she is right about google, unfortunalty there is so much informtion out there on ms it is very easy to worry yourself sick about every symptom ever written.

she was only trying to point this fact out to you.

I dont very often say much on here as i find reading alot of the other posts have answerd many question i have.

And i have to say i have found what Tina has said in the forums to be very helpfull.

Im sure everybody here find it hard to deal with what is happening to them one way or another, and have all been through some very scary and painfull symptoms.

I do hope you can take a bit of time to see people here are trying to help you, but that maybe difficult if you feel so defensive about what is said.

I wish you all the best and hope you feel better.

sharon x

11

I am sure that Tina has made no such claims. She does give good, non-specialist, common sense advice, though.

Alison

12

Hi Anon I am sorry you are feeling the way you do. I know when I was diagnosed I felt angry about it. And I spent a lot of time Googling MS and read all sorts of stuff, some good, some really bad. So I stopped. And I joined this forum and read all about it on here. I don’t post a great deal, but I come on when a new and strange symptom happens, because, as others have said, someone on here has had the same, or at the very least something similar and I find that reassuring. As for Anitra, I always find her posts very friendly and informative, and I would not agree with your statement accusing her of being the forum MS specialist, actually I found it spiteful. What I tend to do when I have a new or strange symptom, I look here first. And if nothing comes up, note it for my next neuro appt, I then make an appointment to see my GP. I never assume that it is MS, unless others have had the same thing. X

13

Hi Anon

I don’t think anyone can say how they got MS and there is nothing we could have done to stop the MS starting up. No matter what the professionals do it will not stop the MS starting.

Tina has always been very helpful when replying to my posts. She is also very knowledgable about the condition as are a lot of us old timers on here.

Your post comes across as you are very angry. I hope you find some sort of answers to your questions and I wish you well.

Shazzie

14

Tweakle Tart…Bang on!!

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Not op.

16

I know the NHS isn’t perfect but I just get annoyed when people criticise it unjustly. You should maybe try toddling off to America and see how far your student loans get you when you have to pay for every MRI scan, emergency room visit and doctor’s appointment before you even get started on DMD’s and prescriptions!

17

Anon please don’t use your valuable energy levels being negative, it achieves nothing, I know I have been there. I treat what has happened before as history and try to move onwards and upwards and find something positive in today. I wish you well and hope you can find some inner peace. I can say that I have found everyone on here very supportive.

18

Worry,no you don’t ‘get’ MS it’s not like cold you can’t catch it like a bug.Its auto immune ,it’s there in your system -maybe having that ear infection brought out the MS from its dormant state ? I had a bad fall in 97 -the Friday before Diana died-I ripped my kneecap wide open -recovered an a year later went touring the US by greyhound - standing around in horrid heat,dancing like an a$$ at live gigs ,drinking alcohol,very little sleep and living out of fast food chains - came back and it all went to hell - was it the 6 weeks in the US that gave me MS? Was it the fall? No , I can recall being 16 when the freezing /pain started in my arms. What the fall/US trip did was weaken my immune system and the MS decided to kick in. Tough cookies,whether I fell or not,whether I over did it in the US or not-MS was already programmed into my system and it was just a matter or time before it came obvious. It’s seems to me that you are very angry over having MS and would like to blame/justify the cause onto someone ie the Doc /NHS you can’t Hun-know why ? $h!t happens my friend , the sooner you learn to deal with MS the better -it’s not the end of the world no matter what MS is NOT a death sentence you just gotta replan you life plan ,you’ll still get to your destination it’ll just take a little longer to grow there! Good luck :slight_smile:

19

Neuro’s don’t understand MS - so gp’s even less to be honest - it’s understandable to say “why me and who’s to blame” but we don’t know and sometimes, I think Why me? Why not me? - Guy I used to know (aged 35) felt bad at bedtime last weekend and went to bed but didn’t wake up, died in his sleep…life is tough…MS affects our life but doesn’t stop it… I just blame the Mrs…lol

20

I got mine by sending 3 tops from a cornflakes packets, have to agree with other people though no definite cause of MS. Have a friend who is a Dr and he has been trying for the past 5 years trying to the causal factor(s) for MS.