When MS is an urgent referral to the hospital

Everyday living
1

Hi. I was informed some time ago that MS is a non-urgent referral to the hsopital. Unless it is something like effects breathing etc.

When I became unwell I was suffering from a chronic ear infection and unfortunately the GP diagnosed with with having BPPV - benign vertigo and benign double vision. He referred me as choose and book routine to the hospital. Unfortunately I got to the hospital and didn’t remember to tell the neuro of my ear infection. So he booked me as a non-urgent MRI. I was suffering chronic anxiety at the time from senstivity to noise and due to the ear infection was quite unwell. I had a fever. There is no such thing as benign double vision in BPPV and its an urgent referral - GP got it wrong.

I’m pretty sad about it all as I had a huge relapse that kept on going , it went to my spine my symptoms and have many lesions in brain. I am seeing a neuo in a weeks time.

2

Hi Lenney,

How soon you were seen wouldn’t have made any difference, I’m afraid. One of the reasons MS is a non-urgent referral is not only that it’s not immediately life-threatening, but that so little can be done. They certainly could not have prevented your relapse, even if they’d acted immediately.

DMDs do work to reduce frequency and/or severity of relapses for some people, but take weeks if not months to get up to full effectiveness, so even if you’d started them the same day (highly unlikely, as it usually takes weeks of administration, if nothing else), they wouldn’t have worked immediately to prevent a relapse that had already started, or was just about to.

Similarly with steroids. They CAN sometimes help to recover more quickly from a relapse. But studies have shown they make no difference to the amount of damage that is done, or how completely you recover - only how quickly.

So please don’t torment yourself thinking faster referral could have prevented the relapse, or reduced the amount of damage. It couldn’t.

I don’t mean to sound unkind when I say that’s just the way it is. But MS gives us enough to be sad about, without believing - wrongly - that it all could have turned differently if only we’d seen somebody sooner. There is nobody to blame for your relapse - not the GP, not yourself. Preventing relapses is the holy grail of MS research, but so far, even the best drugs we have are only moderately successful, and don’t work instantly, so sending you to hospital the same day, and shooting you full of drugs wouldn’t have meant everything would be fine now, and that you would have had no relapse, and no brain or spine lesions.

One day they might be able to test for an imminent relapse and stop it, but not at the moment. So try to accept it as an act of God, or fate, or nature, or whatever it is you believe in. Nothing humans could have stopped.

You don’t say how long ago this relapse was, but it can take many months to recover, so if it was all quite recent, there’s still plenty of chance of improvement.

Tina

x

3

Hi. I had an appointment in London the other week, my annual one at the neurological hospital. Normally I go in and report that everything is fine but these last few months have seen a worsening of my original symptoms, ie. tingling feet and hands, blurry vision and frequent dizzy spells, not to mention fatigue, the main one for me. Doctor didn’t do anything different, just booked me in for next years appointment and I left feeling annoyed that they didn’t even offer advice let alone treatments. But on the train home I realised that they can’t really do anything. Perhaps I should have explained it better or somthing, but what can be done? It does worry me a lot but at least this forum exists if nothing else.

4

But I would have thought they could have offered me antibiotics for the ear infection. I needed to be seen in hospital sooner as it was a servere ear infection. My vertigo was caused by infection not MS, so that was servere. The sound senstivity was hightened due to the ear infection and MS. Hypercussis is the sound senstivity. I needed to start the recovery process so much sooner as it dragged on. I was not getting enough sleep to recover. I was getting more unwell each day due to the anxiety building up and I was unaware of how unwell I was getting. I think my brain was not working right being a servere ear infection and the double vision. Unfortunately it seems my MS relapse triggers are infections, lack of sleep and anxiety. I have a neuro appt coming up on the 2nd so will ask him what he thinks.

5

I don’t even remember the GP checking my ears for infection when I had the vertigo. May be that’s part of the problem.

6

Hi I’m probably way off, but could it have been a viral infection hence why no antibiotics were offered. I recently had Labrynthitis and had similar symptoms. Antibiotics weren’t offered as it’s viral. L x

7

Hi again Lenney, Infections and anxiety both aggravate MS symptoms, but they don’t cause lesions. Anibiotics might have made you feel better, but they wouldn’t have altered the number of lesions that you have, or stopped the relapse going to your spine, as you put it. By all means discuss it with your neuro next week. He should be able to reassure you that antibiotics couldn’t have stopped the relapse - it’s two different things. Treating any infection you may have will often make you feel better, but won’t treat the underlying MS. You can’t do much to avoid infections, as everybody gets them sometimes, but you could ask your doctor about help to reduce your anxiety, as stress tends to make MS symptoms more pronounced. When I had the relapse that led to my diagnosis, I found even an unwanted invitation from some over-pushy friends caused my legs to go weak, but that’s not the same as saying it caused new lesions. The lesions were there all the time, but if I got stressed, the effects became more noticeable. So it’s worth trying to avoid stressful situations where possible (I appreciate there’s often no choice!) but also learning to manage your own anxiety levels. Certainly trying to avoid stressing that somebody could have stopped your relapse, because a more urgent referral wouldn’t have achieved that, unfortunately. Stressing that maybe it could have won’t be helping you. Tina

8

Infections do cause lesions, especially periventricular and pons lesions. If you look on this site i’m sure it mentions they do, also web search. Also things like head injurys cause periventricular lesions. Thats why when they do autoposeys on boxers they discover lesions in their brains often.

The antibiotics would be to help fight the infection. I suspect it was a bacteria infection as I did have blood tests that checked for for HIV, lyme etc later but nothing came up.

My MS nurse has told me MS and infections are not good together and an infection must be controlled as much as possible.I I.e see a GP. She said infections can certainly trigger a relapse.

9

Brain lesions can be caused by a number of things… infection, infarction (stroke), injury, cancer, some chemical exposure, immunological disease etc… i.e. no all brain lesions are related to MS.

But I think when infection is related to brain lesions it is in terms of a brain infection, not an infection in another part of your body, in this case your ear.

10

I think you’re getting rather confused. Please show me a link to the place on this site where it says infections cause lesions, as I don’t believe there is one. Be very careful about your sources of information, as there is a lot of misleading stuff out there. This place and the MSTrust are reputable, but a lot of others aren’t. Yes, of course head injuries can cause brain lesions, but not all lesions are MS lesions. A boxer who is “punch drunk” has brain damage, but that doesn’t mean he has MS. All sorts of things can cause brain lesions, that have nothing to do with MS. Infections - particularly respiratory infections - ARE linked with an increased risk of relapse - but five or six weeks later - not instantaneously. It is not at all likely that your ear infection caused your relapse, but even if it had, antibiotic treatment does not stop relapses. Infections do make symptoms worse, and that is why your nurse is recommending they should be treated. Many people with MS will tell you they feel absolutely dreadful during an ordinary cold. They aren’t having a relapse, but often feel as if they are, because all the symptoms temporarily flare up. Symptoms are often closely related to body temperature, too. If you have a fever - which you did mention you had - or even just get hot from exercise, you may notice an increase in symptoms. This is because increased body temperature slows down nerve transmission, so if there were already any problems, they will become more noticeable. It doesn’t mean new damage is being done, though. Do discuss it with the neuro. I’m sure he will tell you antibiotics couldn’t have stopped the relapse, but if you’re convinced otherwise, talk through your concerns with him. He will be a more authoritative source than your GP, your MS nurse, or forums. I am quite sure your MS nurse didn’t mean to give you the impression your relapse could have been averted by antibiotics. It’s a shame if it came over that way. Tina

11

We will probably have to agree to disagree. www.emedicinehealth.com_brain_lesions_lesions_on_the_brain_em.html scroll down that page. I will speak to my neuro. My MS nurse said it has been reported many times that an infection can trigger a relapse. I guess it may mean in the way that when the body is run down you become vulnerable to infections. So this can trigger a relapse.

I not sure cause and trigger mean the same thing, It was not instant in my case, I had 19 days of vertigo caused by the infection then the double vision MS relapse began.

12

hiya

and this thread is an example of why ms is so difficult to treat! everyone is so different and everyone inc professionals those with ms. we all have our own ideas of how we got it and how to treat it. thats different for us all. i have an idea of why i have it-i doubt if medics will agree but it allows me to sleep easy at night knowing i have an explaination i can life with on an a daily basis.

be happy everyone…in whichever way u are able. ellie

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Hmmm, I cannot get your link to work, I’m afraid. There are many articles about brain lesions on that website, but that does not mean they are all referring to MS lesions. Are you sure the article you read was even about MS, or brain lesions from some other cause?

Yes, some infections can lead to brain lesions - but then they wouldn’t be MS, just like a head injury isn’t MS. If we are definitely talking about MS lesions, then they are not caused (that we know of) by infection or trauma. Research has identified possible links with exposure to the Epstein Barr virus, but that is thought to be well before the onset of symptoms (i.e. years, probably) - and a virus wouldn’t be treatable with antibiotics anyway, as someone has already mentioned.

Tina

14

Hiya Ellie,

I get what you’re saying, but surely it’s not positive or conducive to being happy if an individual’s personal “explanation” involves blaming someone (in this case the GP) for not preventing something they couldn’t have prevented anyway? That just breeds anger and resentment over something that was nobody’s fault.

Tina

x

15

tina

spot on-i agree. blaming anyone else however valid it may seem may make the person with ms feel better short term but long term the only person only becomes angry and bitter etc. i struggle to make myself understood these days even in the written word… but i read alot on here and sense there frustration and need for answers. in my own experience when i stopped looking for answers but began accepting this was happening and dealing with that life was easier. mentally-definitely not physically!

i am off to crete 2 wks today! not been since my mega life changing relapse 2 yrs ago! will try and email before i go…

ellie x

16

I think that this is the link that Lenney meant to post:

To make a jump from lesions as a result on an infection, to a diagnosis of MS, is what I would call “Going beyond the data”.

Geoff

17

Thanks Geoff - I’d tried to work out what the correct link might be, but failed dismally. If that is indeed the one Lenney meant, then as predicted, it’s not talking about infectious causes of MS lesions, but unrelated things.

Tina

18

The thing is my mum is very upset as this was my first MS symptom, not because of that but it could of been a brain tumour as that can cause dizziness and double vision. Also I don’t think it was very nice and fair on me. If the GP gave me antibiotics for the infection then referred me as urgent then fair eough then of course he did his best for me. But I don’t think I was given the best chance for my body to recover.

Like my MS nurse said an infection when you have MS is not a good mix and I wish I had known then what I know now. I would have got a second opinion. The neuro I saw was not happy with the GP for referring me as non-urgent, he mentioned it to me. The GP has said he said he didn’t know double vision in BPPV was an urgent referral as his guidlines were not clear. I had full trust in him of course and didn’t know GP’s don’t know everything and do make mistakes. I was silly to think that and I am much more on the ball now.

Anyway like you say I just have to get on with it now. i’m going to a talk today on MS treatment so should be interesting.

19

You can reassure your mum it wouldn’t have changed the outcome, as early treatment with antibiotics can’t prevent or limit an MS relapse. I’m sorry you are having to go through this at all, but at least you are not in any worse position than you would have been if your GP had acted sooner. In that sense, no harm has been done, even if you feel disappointed with the doctor.

Tina

20

Unfortunately I would to disagree. My relapse triggers include servere anxiety and lack of sleep. This was what I was having when I had the double vision and my long referral wait I was being disturbed every night. If I had got a second opinion and was treated with antibiotics at this point of vertigo who know’s what may have happened. It was winter at the time and I had to go and get food in the snow and ice as the shops delivery vehicles were off the road. I was not at home near friends or family at the time to help me. I was not given the best chance for recovery. Lets just agree to disagree.

If you took an MS patient and gave them a nasty ear infection, a fever, vertigo caused by the infection, about 4 hours sleep a night for seven weeks, made them really anxious, made them go out in the snow and ice to get food and extremes of temperatures. See what state they would be in, they might keep on relapsing. No I wouldn’t wish that on any MS patient. I have learnt the hard way.