referred for MRI, confused about some things

New diagnosis and before diagnosis
1

Hi,

i’m sure lots of aspects to this will have been mentioned lots of times already so forgive me for repeating what is no doubt a very common situation.

I started having a tingling in my legs 4 years ago. Over time I also began to feel extreme fatigue - to the point where most days I spend on the settee & walking even short distances can be exhausting. After years of trying to get the doc to take this seriously I eventually badgered them into testing - there then followed years of different tests for Diabetes, ME, Fibromyalgia etc etc. I was found to have low vitamin B (for which i’m having jabs) & low Vitamin D (taking supplements for that). Anyway, at that point my doc was more or less fed up with me asking for more investigations. I eventually had to complain to the practice manager. Not much happened after that until I did some research on a chemical I use in my work. One of the symptoms of exposure to this is tingling, fatigue - peripheral neoropathy. So I went back to my doc & more or less demanded I be referred to a neurologist.

Anyway, after waiting some time I had my appointment with him today. He carried out reflex tests (knees, arms etc), got me to stand on tiptoes, follow his finger, look up & down etc & also pricked me with a small needle - all of which I felt ! However he didn;t do the Babinski test (running an object down the side of the foot - yes ?). He told me he doesn’t think I have peripheral neuropathy but then dropped the 'i’m referring you for an MRI as you’re reflexes on one side are more firm than the other (I couldn’t tell any difference so it must have been quite subtle) & that could be a sign of demyelination & MS. At that point I have to admit I went into a bit of a fog. I have a good friend with MS & so I suppose its natural that my experience of MS is through their MS. Over the years of knowing this friend i’ve researched the condition somewhat but the specialist said a few things that confused me, for example he said that some people have MS without any symptoms really or that they don’t have any effect on their usual lives. I have to admit that I didn’t know that & am asking myself whether he was trying to reassure me.

I don’t really know what i’m asking here - I guess lots of folks who hear the words MS want to talk, to find out more etc & don’t really know if there is anything they can ask that would help. I have to wait a couple of weeks he thinks for the MRI & then said it could be 3 months (from today) before I hear anything. I suppose that’s normal but its a long time to not know ! He’s also told me to come back for blood tests. I’ve had tons of blood tests since this all started so I know a bit about those - what would he be looking for in the blood tests ?

thanks

2

Hi,

I’m sure your neurologist was trying to reassure you - but at the same time, that doesn’t mean he was telling untruths to do it.

It would be totally unethical of him to lie to a patient, to create a false sense of reassurance.

So what he has said is true. MS is a hugely variable disease. Some people are minimally affected. Some people are only diagnosed post mortem (having died of something unrelated) because they never had symptoms serious enough to be investigated during their lifetime.

It’s believed there are always a small number of people in the population who are going around with MS, but don’t know, and possibly never will, because nothing serious enough happens.

Unfortunately, at present, there is no test that tells us who is more likely to be severely affected. I say: “unfortunately” - I don’t know if it would actually be a good thing. Obviously good for those whose test put them in the “less severe” category, but pretty grim for anyone who was told they were in the “most severe” camp, as they would not even have the consolation of: “I might be lucky, and it not turn out too bad”. Knowing the future is not always great, but at the moment it’s hypothetical anyway, as we can’t do it with any degree of accuracy. It’s pretty much a case of: “time will tell”.

The blood tests are for tens, if not hundreds of things, but oddly, the one thing they’re NOT for is MS, as it does not show in the blood (again, this is a test that’s being worked on, but doesn’t exist now). I know only a very few of the things they test for, but it includes things like infectious diseases, vitamin deficiencies, rheumatology spectrum disorders, and things like that. Basically, all the stuff that isn’t MS, shows in the blood, and could have the same or similar symptoms.

MS is known as a “diagnosis of exclusion”. That means there is no definite yes or no test for it, so it can only be diagnosed by ruling everything else out. Hence so many tests for other things.

I don’t really know what typical NHS waiting times are for an MRI. I was diagnosed under my employer’s private healthcare package, so all my tests and appointments came through very quickly, even though diagnosis itself was NOT quick (about eight months total). MS is a notoriously tricky diagnosis, and waiting to collect enough evidence can have more of an impact on timescale than just how fast the appointments come through. I would have thought 12 weeks is the outside limit to the wait for an MRI, under NICE guidelines, but it will vary depending on waiting lists in your area. He may have been quoting “worst case”, so that you won’t worry if you haven’t heard in a fortnight.

Tina

3

Hi,

Iv just had a brain scan for MS, iv got the results which says there are spots showing in the white matter, iv have not had appointment with neuro to discuss these as yet. The neuro made the referral for scan and i had to have some bloods taken at the same hospital and went to look at the scanning machine as it was a new one and a little larger than one i had been in before. The staff were brilliant and did the scan there and then so i only waited 2 days for the scan.

Its terrible waiting to see what the scan really means especially over the holidays.

What other symptoms do you have?

Christine

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4

thanks folks.

so, over the past 3 years or so I have had lots of blood tests trying to rule out all kinds of things. I’ve had at least 2 ‘full panels’ so I fully expect the blood tests that i’m having soon won’t show anything else, except perhaps my B & D levels again. My foliate level was low awhile back but has corrected itself.

symptoms:

tingling feet (not really tingling more like the sensation of having been stood up for a long time) - that’s fairly constant.

extreme fatigue (to the point of some days finding it hard to do much at all)

that’s more or less it really. My eyesight is fairly stable. I’ve had vary-focals for about 4 years I think. Sometimes (perhaps twice in the past 6 months) my eyes de-focus but I think that’s ‘normal’ tiredness. I suffer from stress quite a bit at times but as far as I can remember this hasn’t altered since the tingling & fatigue started.

5

Hi. I’m playing the waiting game too, & it really messes with your head. I have an 11 week wait (& that is as a ‘priority’ case), but a brain & spine scan takes time, & that’s the earliest I could get a long enough appointment for. I have to try really hard not to get annoyed about people complaining about a week or two’s wait ; ) Can’t help you with the blood tests, as I haven’t had any. My neuro doesn’t want to do anything until he’s seen the MRI results.

Stay strong.

Paula

6

thanks folks.

i’ve had lots of blood tests so I doubt they’ll find anything ‘new’ there.

symptoms:

tingling in my feet (more or less constant)

extreme fatigue

my eyesight doesn’t appear to have got any worse over the last 4 years - sometimes de-focus but I think that’s normal. I also seem to get stressed easily - but stress has always been a bit of a problem at times.

thanks.

7

if you don’t mind, i’d like to say something which perhaps isn’t said often + ask a controversial question !

I had my blood tests - not heard anything from that & have no idea how to find out if they showed up anything - do I phone the neurologist or my normal doc ?

I’ve also now had an MRI of my head - so I now have to wait to find out results. Annoyingly I was told that the neurologist will look at the scan & if something shows up i’ll be contacted to see him within a couple of weeks. If there’s nothing spotted on the scan i’ll get an appointment a couple of months down the line. Why can’t they let you know that there’s nothing on the scan at the same time ! frustrating that. Specifically I actually was / am looking for a house to move to but have put that on hold somewhat waiting to see if I do indeed have MS (which will affect certain choices perhaps).

so, I often read about exercise, good diet etc. I’m sure there have been people on the forum talking about difficulties with those things but if its ok i’d like to share a bit more: the thing is i’ve had this constant fatigue for years now, I live alone & i’ll be honest I am finding it increasingly difficult to do even the basic daily things. I see my daughter a few days a week & run a small business from my house so all my energy is reserved for those things. I am thinking of putting my business on hold because I can increasingly see that i’m not keeping up with the work. This worries me a lot for a couple of obvious reasons: finances for myself (for now & the future) & wanting to keep working to ensure I can do as much as I can for my daughter (while i’m here & later). I am quite lonely - I only have one or two friends locally & rarely see them because I am so tired & I don’t really invite them here because I find it hard to keep my house as tidy as I would like. Its not really untidy but there are various things that need doing. One of my friends also has MS & so they can’t really visit that often. The other has a young family so again doesn’t have a lot of time to visit (only seen them once in perhaps 3 / 4 years actually).

I hear / read folks saying ‘exercise will help’ etc but I often don’t have enough energy to walk to the kitchen. I hear / read lots about a healthy diet but I can sometimes barely cook anything at all. My motivation is very, very low. Perhaps some might find this annoying or daft but if I put it into words I would say that there’s a kind of being so exhausted, unmotivated & lonely that I don’t really see the point of even trying. I don’t mean i’m depressed though - not at all. What I mean is that I have so little energy that all the talk of exercise and eating healthier sounds like a foreign language to me. My doctor said ages ago ‘join a gym’ & he didn’t seem to be hearing what I was telling him - it took my all day to find the energy to get to the doctors appointment ! I know some will say ‘its because you don’t exercise and don’t have a more proactive attitude to a healthy diet that you feel this way & once you start you’ll find it easier’ but even if I knew for certain that would be the case I really don’t have enough energy to start - not enough to even go & buy clothes for the gym or join one, not enough to cook healthy meals for myself every day (nb. I don’t eat junk instead - I tend to eat not very much & quite basic things when I do. Fruit & Veg is on the low side because it goes off quickly & it takes me such a lot of energy to do the shopping). I guess its at times like this where having a partner really comes in handy ! not to do everything of course but to help with motivation & lending a supporting hand where needed.

This has been going on so long that my house is a bit of a mess. I don’t have the energy to vacuum or dust though I do try every now & then. I know i’m repeating myself but i’m totally exhausted. I could sleep several times a day & still not feel rested.

now for the difficult question & I apologise if this offends anyone. As I mentioned earlier I have a friend who has MS & actually we had a relationship some years ago. At that time I read a bit about MS so I could help & to simply know more about it. It is always said that MS isn’t something you can ‘catch’ from someone else & yet I have read reports that indicate that the rates of people with MS who also have a partner who had MS before them is high. My symptoms started after that relationship so I confess I did, in my initial ignorance, try to research the evidence for MS not being something that can be passed from person to person comes from & i’ve actually found it quite difficult to find. There are references to research in mice & other animals but nothing, for obvious reasons, on research in humans. Does anyone know anywhere where the absolute certainty that MS can’t be passed from person to person is stated & backed up by accessible research ? I’m not arguing with the evidence, I simply want to know more about it.

8

Aw, lots of hugs your way. I can’t really help with your questions. I do know that ms cannot be caught though. Viruses may trigger it, but even then, it purely depends on how your body will react to it. Point in case, I’m sat here with tonsillitis, whereas my hubby and daughter have also got the same bug, but in their cases they just have a nasty sore throat and cold.

Two years ago I had a random fatigue episode, which lasted for a couple of months. My GP did blood tests, found nothing and decided I was depressed. I wasn’t though, I was just bleeding knackered! However, it did make me go and do lots of research about depression, and fatigue is there in big flashing letters.

Having read through what you have written I get the distinct impression that you are feeling really down, and like I said, that in itself has a big impact on health and energy levels. It’s also winter, and so lack of sunlight comes into play too.

Home food delivery is a great one to help when you’re not feeling up to things. Fruit & veg easily last a week without spoiling. Since this all kicked off for me, I’ve been eating salad every day. Even if you’re eating ready meals, you can make a small bowl of salad to go on the side. And don’t go thinking all floppy lettuce! Crispy lettuce, chunks of cucumber, cherry tomatoes, gherkins, beetroot (raw or cooked), mangetout, peas, avacado, radishes, smoked salmon, prawns (I’m vegetarian, but love fish!). I just shove in anything I fancy. I tend to keep my salad stuff all together in the fridge, so I can pull it all out together, and then it literally takes my 10 minutes to chop it and clear up afterwards.

There are also lots of exercise stuff you can do at home, via DVDs and youtube, if you can’t get to classes. Best I’ve found are the yoga type classes, as they get you moving and also allow plenty of time for resting (sorry, meditating!).

Take care

Paula

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thanks Paula.

its is tricky to put into words or fully explain but i’m not depressed - I do get down sometimes but its caused by the fatigue etc & not the other way round. I have had a couple of bouts of depression in my life (caused by specific events) & know a lot about it & seriously i’m not depressed.

I used to be a chef so I am actually a decent cook but I seriously don’t have the energy to cook very often. I know fruit & veg can last a week but what I should have said instead was that the energy needed to run a household well is lacking & i’m becoming somewhat overtaken by it.

exercise dvd’s etc: thanks for that - yes, i’m aware that there are things one can do at home, but again, I seem to have difficulty explaining. I literally don’t have the energy to do anything like that.

thanks.

10

[quote=js I did…try to research the evidence for MS not being something that can be passed from person to person comes from & i’ve actually found it quite difficult to find.

[/quote]

That will be on account of there not being any!

A lot of sweet life can be wasted trying to prove a negative, though, so I think you should stop knocking your head against that particular brick wall as soon as you’re able.

Having said which, I dare say a few of us harbour suspicions about what lit the MS fuse in our lives and most of them - including mine! - aren’t very scientific. It is a popular pastime, but probably best not made a hobby of. Whatever the technical explanation turns out to be, sheer bald-headed bad luck will be what it boils down to, most likely, and there is nothing a person can do about that.

Alison

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Excellent! Just saved me a whole load of typing, which was to have included the very phrase “prove a negative”. :wink:

Thank you, Alison.

Tina

x

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12

thanks for replies about evidence.

I guess if there isn’t any evidence then why do such a lot of resources, inc, the MS society state that it cannot be passed from person to person ?

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Because not a shred of evidence has ever been found that it can!

It’s not at all my field, but I’m confident epidemiological studies would have revealed years ago if there was any support for a theory of infectious transmission.

But “no link found” is neither headline news, nor a groundbreaking piece of research, is it?

The focus, rightly, is on factors where statistics are suggestive of a link. But that is not the case for person-to-person transmission.

I’ve never seen or heard of the reports you mention, that claim incidence of MS is higher than expected amongst partners of people with MS. I’d be most grateful for a link.

IF, despite all that is known, it was somehow transmissible, all or most of us here should have infected someone else by now.

I realise it’s hardly a scientific survey, but in the many years I’ve been on this forum, I think only one or two people have ever posted that they and a partner or ex have both independently developed MS. Although it’s extremely bad luck, you would expect a small number of such cases to arise by chance. And without wishing to pry into your private life, it would also depend how many partners someone has had. The more partners there have been, the more chance that at least one of them has MS, dies in a car crash, wins the lottery - name the uncommon event of your choice!

Of course, there are quite a few “MS couples” who met and got together because of their shared experience of MS - when they already knew. Those are clearly not evidence for transmission.

Tina

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thanks Anita.

I didn’t really write things in a clear way. I was kind of asking in the same way I would about any illness. If I ever read a website or report that says ‘we don’t know what causes this’ (like ME, CFS etc) & then says ‘It isn’t caused by…’ I get curious and might try to find the research. As you say if no evidence has been found then its hardly likely to be a line of active research in the same way as the more possible causes, but it does seem that MS treats this slightly differently - no doubt because the researchers and organisations are conscious of any stigma that would be caused. I should also clarfiy that I never thought ‘can I catch it’ - I simply did basic research at the time on what a partner of someone with MS should do to be of most help & found that lots of the websites started out with the ‘you can’t catch it’ line & I wanted to know more about that because I was curious.

The article with the research about rates of MS in partnerships etc was something I read years ago now so I don’t have a link but i’ll see if I can dig around on the net & find it.

15

I think you are asking the impossible. You want “proof” that X cannot cause Y.

It doesn’t work that way. You start with a hypothesis (that X does cause Y), and then look for evidence in support. In this case, none has ever been found, which makes it an extremely weak hypothesis. If it was correct, it would be reasonable to expect some evidence, but there is none.

That’s not the same as saying it hasn’t been looked into. I’m sure it has - as have a lot wackier theories about the causes of MS. I’m sure the research hasn’t just been thrown away, but I wouldn’t expect to find great swathes of academic papers about it, because research that fails to support a hypothesis is, by definition, not very interesting or illuminating. So it’s not deliberately suppressed, it just fails to attract attention because it’s dull, basically. Millions of things don’t cause MS. I bet you can’t find an academic paper that proves it’s not caused by, say, cheese, either. We don’t need a research paper to prove it’s not cheese, because there’s never been any evidence pointing that way.

MS has been around long enough, and statistical analysis has been around long enough, that with an estimated 100,000 people affected in the UK alone, it would have become obvious to any epidemiologist (and probably Joe Public too) if any or all were capable of infecting others.

Several decades ago, by the way, there was a theory that MS was an STD! That was blown out of the water when it started to be recognised in children with no sexual history - and they couldn’t ALL be victims of child sexual abuse!

Diagnosis in children is still comparatively rare, but does happen. It may not have been found earlier, because it wasn’t looked for. Now it’s accepted as not necessarily an “adults only” disease, childhood diagnoses are on the increase, although childhood prevalence has probably not increased. Earlier generations probably just went undiagnosed for longer. :frowning:

I think I wasn’t right in childhood, so who knows?

Tina

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thanks. I think I haven’t really explained my thinking. I do see what you’re saying but I was simply researching & wanted to ask if anyone knew if there had been studies that could still be accessed online etc.

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There are probably people on here who can speak with authority about the aetiology of infectious diseases and explain why MS isn’t one of them.

I can cheerfully BS for England on most topics - try stopping me - but even I’m not going to tackle that one on the basis of one year of biology at secondary school. So I must fall back on the line - feeble-sounding but probably right - that it really doesn’t seem to be a serious possibility, or else we would have heard a whole lot more about it.

Alison

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Like everybody else on here, I still think that you are on a wild goose chase trying to find academic proof that MS is NOT something that you can catch but it might help you to Google search using the following terms (INCLUDING the quotation marks or you run the risk of getting some VERY strange results that you do not want on your browser history!)

<<<<< “multiple sclerosis” "sexually transmitted >>>>>>

If you do, you will find the links to the 2002 academic paper that MS was linked (in part) to sexual transmission - from soldiers stationed on MS “hot-spots” in the far north such as the Orkneys and the Faroe islands. Such papers are subject to peer review after publication when the hypothesis put forward is evaluated and any weak spots are tested.

This hypothesis was not just challenged after publication it was SO flawed that it was rubbished by the editor of the journal in that very edition! Roughly speaking it was pointed out that the basic premise used was wrong (with MS being stated to be the same as another disease that did have a sexual element) and the data the author used to support the theory being out of date and contradicted by the correct up-to-date data.

So. This was a theory that was fundamentally flawed right from the beginning. I could put forward the following theory and it would have just as much validity - “I am a lawyer. I have MS. I trained with, work with and know other lawyers. I know other people with MS. A number of the people I know with MS are lawyers/legally trained also. Therefore, I conclude that being a lawyer gives you MS” Do you think that that theory is correct?

I hope you said no! But are you now going to worry yourself into a state because you can’t find academic research that PROVES that you cannot get MS from hanging out with lawyers?

Mind you, the fact that the sexual transmission theory was “all me eye and Betty Martin” (as my late mother used to say) didn’t stop the Daily Mail from running the story in 2002 with the scare headline “Could MS be sexually transmitted?”. They did, of course, answer their own question in the article by saying “No it isn’t” of course.

Please save your (limited) energy to look after yourself better and try to stop worrying about a non-worry.

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Doesn’t sound feeble to me!

My view is that as MS patients we give gallons of blood on a regular basis for routine medical care and research, genetic material as well in some cases; some of us even donate our bodies to research when we die. Infections are high profile (think AIDS, mad-cow-disease and the public hysteria about them) and researchable. Infections raise the possibility - however remote - of cures and/or innoculations and/or retro-viral drugs.

All music to the ears of the Pharmacutical world so if there was the slightest chance that you could catch MS like catching a cold you would imagine that you couldn’t move for research scientists getting research funding to find the “bug”. However, I don’t think that funding institutions hand out research grants like a drunken Santa handing out presents so there has to be some viable basis on which a research proposal is based!

I hope that Dr Geoff is about for general comments on having to present a viable theory for research funding - he has experience I think in research projects and knows his stuff about statistical analysis in research projects.

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I do seem to have caused a lot of confusion. I really didn’t mean how my words have been taken. I’m not wasting any energy on this research now - I mentioned something that happened ages ago & that at the time I thought was interesting. Because of recent events for myself it means i’ve been going back into researching MS & I was reminded of that so simply thought i’d ask if anyone knew about any research. I don’t think that’s what happened to me or indeed, most probably, to anyone - I was only interested to know about the various aspects of MS research. Anyway, shall we all move on ?

what I really regret about putting that question in my post is that the other aspects of it have taken a back seat & it’d be good to hear more from folks who also struggle with not having enough energy to even think about exercise etc. I know everyone wants to stay positive & take action etc. but I can’t be the only person on here who reads such things & thinks they’re not ‘on the same page’ so to speak.

thanks for the replies though.