Help with mri please I'm struggling

Hello I’m new today and very scared. I’m 41 and have pins and needles in left foot and my left eyelid twitches about ten times a day. I’m also very tired all the time. I did have loss sensation right side of leg above ankle but that is back now. I went to my gp in August when this started and they dismissed as anxiety. I went back five times and finally was sent for a mri. I do suffer from anxiety and depression and wonder is it possible that could be the hyper intensity on the scan? But it’s not is it? Well the mri says Focal area hyper intensity within the splenium of corpus callosu m This exhibits what is sometimes called the boomerang sign. It went on to say that was only abnormality the flow voids were normal It said I understand the boomerang sign may be transient in some cases and has a wide differential? Given the clinical features I would think demyelination would be high on the differential. I am waiting to see a neuro radiologist as the mri has been sent to a bigger hospital to be read. I have got ms then haven’t I? They won’t say yes or no just THST there is an abnormality and until see the expert they don’t know It’s not looking good is it ? I’m so scared. I live alone I have no family or friends I can’t be disabled I just can’t. I also have four slipped discs in bank I was clinging to fact it was to do with that but this hyper intensity is another word for the lesions isn’t it? So that is ms? Pls any advise would be wonderful. I just can’t stop crying and am do scared. I don’t want to take drugs. I don’t know how long until I can’t walk? I’m - 17 diopters in my eyes already and struggle. I gather u lose your sight too Pls tell me how u cope. How it has progressed. How it effects your lives. I take my hat off to u. I know I can’t cope I’m a very weak person I want to go to dignitas when I can’t get about. Pls help. Thank you. Your all so brave

and Belinda’s hat has corks swinging from the rim

Happy to help

Also my dog died in January afyer 14 years together. I was hoping to buy a new one but if I can’t look after it, it’s not fair is it? I just feel so alone and so scared. My independence was so important to me. I just can’t cope.

Hi Candyfloss,

I know it’s hard, but please try to calm down!

I;ve never heard of the “boomerang sign”, but a single lesion (if, indeed, it is that) is not synonymous with an MS diagnosis. Neither is a diagnosis of demyelination. Although MS IS a demyelinating disease, it’s possible to have a single demyelinating attack - sometimes for reasons that are never determined - but NEVER go on to develop MS.

And worst case, suppose it is MS? For the vast majority of people, it means having to make adjustments, but it does NOT mean becoming helplessly dependent overnight - or, for most people - ever. People with MS marry, work, have kids, have pets, have social lives.

Having MS doesn’t mean you lose your sight. Vision problems are not uncommon, but it’s rarely total blindness, and rarely permanent. People may have spells when their eyesight isn’t so good. Some people never have vision problems at all (I get occasional very subtle colour distortion, but so far, nothing more scary than that). How do you think so many people (hundreds of us!) are posting on this forum, if we’re all as blind as bats, and completely helpless? A lot of us using computers, aren’t there?

And of course having an illness doesn’t mean you can never have another dog! Think how many elderly and disabled people have dogs! It’s no barrier to owning a pet. Many people have one because it helps keep them active, and because it gives them a focus outside themselves, that is not all about them and their illness.

Most people with MS will NEVER need a wheelchair. Others will only need one occasionally, for periods when they are less well, or if they’re attempting a particularly challenging distance.

You’ve probably stood next to someone with MS and not known. Throw out everything you think you know about it, because it’s almost certainly wrong. Very few people get ALL the symptoms, and certainly not all at the same time. Some people go years and years, with few problems.

And it’s still too early to conclude you have MS anyway. You’re already worrying about becoming helpless from a disease that rarely makes people helpless, and you might not even have!

Many illnesses - but MS especially, if it was that - are exacerbated by stress. So one thing you can do straightaway to help yourself is try to calm down. Stressing about worst case scenarios is not what you need right now. MS is a manageable condition, for most people. I’m not going to lie to you it’s easy, but I’ve been diagnosed over 2.5 years (and had it a lot longer than that, I reckon). You still wouldn’t know to look at me. I don’t use a stick or wheelchair. I don’t feel great, but I reckon if you could cope with flu’, you could cope with this.

I live by myself, in a three-bed house, with stairs. I recently finished an OU course, and I’m debating whether or not to go to Jordan in Autumn.

See how misleading your preconceptions can be?

Tina

x

Thank you for your reply Tina x You have moved me to tears with your kindness. I did once go on mumsnet even though I’m not a mum for support with depression and only lasted a few hours as they mocked my mis spellings and were horrid doubting my eyes were as bad as they are etc. I was nervous to come on here but u have been very kind I don’t know how u cope? Hearing those words ’ yes you have ms’ must be the worst thing in the world? It’s right up there with the ’ bad’ things isn’t it? Cancer stroke Parkinson’s etc I have read if u are over 40 it’s more likely to be secondary progressive or something? Like a ’ worst ’ one not to take anything away from the other types. But you get worse quicker? You think u may have had it longer? Do u get tingling in your feet? It gets better if I walk. Would that be ms? Would I have it all the time? I have had tingling for bout five years ( which was about the time of my back) but ONLY when I woke up in morning and it went and it wasn’t every morning. Now it’s all day long since August except when I walk and not really in the right foot much? Just the left. I worry it may have started like give years ago and now it will progress quickly? Thank you very much for your time to reply. I think you are all very very brave and I feel ashamed I’m so weak. God bless u all x

I agree 100% with Tina’s reply. I will just add a bit about the MRI result.

The boomerang sign is not a sign of MS.

There are actually a lot of things that can cause it (that’s what “a wide differential” means), but it is normally nothing serious and it goes when the underlying condition causing it goes.

Here’s a quote from Malhotra et al (2012), “Because of its benign nature and complete reversal without any specific treatment, aggressive diagnostic and therapeutic approaches are not needed.” What that means is that this is something that normally reverses on its own, leaving no serious aftereffects and that there is no treatment needed.

They also say, " These lesions of splenium carry a good prognosis due to their reversibility and should not be confused with serious pathologies." Which means that patients who have this do well and that the lesion / the thing causing the lesion is not serious.

When the radiologist mentions demyelination, it does not mean that you have MS. I think what he is saying is that it’s likely that this is a transient boomerang sign (and therefore nothing to worry about because it will go away on its own), but that there’s a chance that there is some demyelination, given your symptoms. However, there are many causes of demyelination, at least one of which is reversible AND causes the boomerang sign!

So that is what I would put my money on: you have a degree of demyelination that will heal itself within a relatively short period of time.

The Malhotra paper talks about the boomerang sign being caused by epilepsy, epilepsy drugs, infections, encephalitis and other things and another paper (can’t remember the author, sorry) says that it can be seen in people who have been in accidents.

So this MRI finding does not mean that you have MS. Please let your fears go!

Karen x

Hello Karen, I’m called Karen too! Thank u too for your reply. It means a lot that u took the time to reply. I saw your name in a lot of things on here and prayed you would reply as you seem to know an awful lot. I ha e just had the letter from the neurologist I am seeing him on the 30 th April Your words reassure me a lot but being so consumed with anxiety anyway I’m Like programmed to still think the worse! Although u have helped me a lot with understanding the words more. Wide differential I struggled with. If I have this demyelination that isn’t caused by ms do we know what could have caused it? I’m really concerned now I have taken numerous overdoses of baclofen an anti epilepsy drug in the LADT four years. I had the drug for my back. It also works as a muscle relaxant. I see on the Internet I think it could cause demyelination or is THat not true? When things was so bad I wished I was dead and took the tablets seems ironic I may have got my wish? Once again thank u so much for your help and time x

I wasn’t aware that baclofen was used for epilepsy; in fact I’m pretty sure it isn’t. I have also never heard that it causes demyelination.

I don’t know everything of course and so could be wrong, but I think it is highly unlikely that baclofen is the culprit.

I also don’t think you are helping yourself with thoughts like “may have got my wish” with regard to dying. Whatever is wrong with you, it is NOT fatal! (And neither is MS!)

Kx

I just know that I can’t end up blind or using a wheelchair and incontinent. One lady wrote that that is what she has and I just couldn’t bear it I’m afraid. I have no friends or family I NEED to be able look after myself and I am terrified what it could be like in the future. I don’t know how u all cope. I really don’t. Karen x

Hi again Karen (Candyfloss Karen, I mean).

None of this is very likely, even if you did have MS (which is still unlikely, at the moment).

Being terrified of something that has never happened, and in all probability won’t, is wasting the life you DO have now. None of us know if we’re going to be knocked down by a bus tomorrow. But spending all our time focusing on that, and how we wouldn’t be able to cope (assuming we weren’t killed outright) is obviously disproportionate and unproductive.

Besides, how do you know you what you could and couldn’t cope with? Thousands, if not millions of people in the UK do live with some form of chronic illness or disability (I don’t just mean from MS) - the vast majority COPE!

You just take one day at a time, and you deal with things as they happen (not before they have), and there ARE specialist services out there to help.

Excepting catastrophic accident (like the bus I mentioned) there are very few scenarios that result in someone suddenly waking up blind, incontinent, and tetraplegic. This isn’t going to happen - to you, or to most people on earth. You’ve probably got a bigger chance of winning the lottery!

If you DO have a long-term condition (and again, I stress IF, as your test results are by no means indicative of that), you will have plenty of time to adapt to matters as, and more importantly IF they arise!

You don’t walk into the diagnosis room the same person you were yesterday, but come out in a wheelchair, blind and doubly incontinent. It’s not like that! You’d be just the same person after diagnosis as before. “It” doesn’t know it’s been diagnosed! All that changes is knowledge - your knowledge - and knowledge is power - e.g. about what choices you have, what help and treatment there may be.

But it’s still a huge IF! As Karen has explained very clearly, you may not be diagnosed with anything at all, and IF you were, it’s far from obvious it would be MS.

And IF it was MS, there’s no reason at all to suppose you would be in the small minority of people who are at the most extreme end of the spectrum, and have a very poor prognosis. Most people manage well. With compromise, but they manage! Don’t forget that most illnesses have a huge spectrum of possible outcomes. A few people have died of the common cold. But the vast majority don’t! Does knowing it’s technically possible to die of it fill you with fear, every time you catch a cold? I’m guessing almost certainly not. So don’t assume that any illness you get will automatically be the worst it could possibly be. The chances of having MS are pretty small - the chances of being at the extremes even smaller. There’s a huge difference between “worst case” and “most people”.

Don’t forget that forums are not always representative, because people having a worse time of it are more more likely to turn to forums. Also some people only post when there’s a problem, and not to say: “Hi everyone, I’m doing fine!” So cases you may read here (or other sites like it) are not a representative cross-section of how everyone is generally. People who are fine are probably off doing something more interesting and exciting!

Tina

x

This might help put it in perspective: the previous version of the McDonald criteria (used to diagnose MS) required NINE lesions. You have one. And it is almost certainly a temporary thing that will heal itself!

As Tina said, you are probably more likely to win the lottery than end up blind, in a wheelchair and/or incontinent. In fact, I would bet that there is NO chance that whatever is causing your current symptoms will cause you any serious issues long-term.

You have worked yourself up into a frenzy and it is not only illogical, it is foolish, will exacerbate your symptoms, wear you out and consume the energy that you should be putting into positive, contructive, fun things to do with your time. You need to STOP! If you can’t, then you need to get help to stop.

Kx

Your extreme anxiety is making my computer screen shake !!!

Even IF you did end up with a diagnosis of MS you WOULD cope, we all do.

I think you need to consider that your extreme anxiety may be causing some of your symptoms and look at resolving that first. Have a look at somatofom disorders, the mind is very powerful and you may be experiencing MS-like symproms just because you are focussing on them with such high anxiety.

I don’t know if your doctor has discussed this with you but there is medication and or counselling / CBT available for people with extreme anxiety and / or depression.

You might wish to look for support on sites such as https://www.turn2me.org or http://www.llttf.com

I’m a little concerned that you say you have no family and no friends, your self esteem seems very low. You might begin to feel better if you get yourself out and about and mixing with friendly people. If you’re just allowing yourself to dwell on what you seem to have convinced yourself is MS, your symptoms are likely to become a self fulfilling prophecy (that you’ll have those symptoms, not that you’ll develop MS).

Best wishes, hope it all gets sorted out.

Just read your further report, there is no reason why you shouldn’t get another pet - any pet owner could get knocked down by the 10a bus, or have a massive heart attack, no one guarantees any of us tomorrow.

A pet may help reduce your anxiety and depression and take your mind off your symptoms .

Hello candy floss karen my name is julie my husband is undergoing tests after lesions were found on his brain he is also almost blind in both eyes central vision has gone.I understand your worry and anxiety it must be hard having little or no family to talk to.But there are people who can help you are not alone.There are alot of people on here in the same boat and it helps to talk to people in similar situations.Keep you chin up xxx julie

Hi Candyfloss,

From what I can figure out from your MRI report you have a signal abnormality that is NOT related to MS. It is something that goes away on its own. It does NOT cause any problems. It does NOT need any aggressive treatment. In other words you will be FINE

Lots of people in their 40’s have shocking vision. It is called middle age. If you have got some slipped discs you may well have some nerve impingment which may (I repeat MAY) be causing some pins and needles in your foot.

Please stop panicking and thinking the worst. It sounds to me as if your anxiety is getting on top of you and that you may benenfit from asking your GP about seeing a counsellor fopr some help with it. Especially since you have mentioned ODing on Baclofen, which by the way is NOT an epilepsy drug but is a muscle relaxant and if you have been having muscle spasms in relation to your slipped discs you may have been prescribed it for that reason.

But I will eat my hat if you have MS. Please stop winding yourself up and start looking more constructively at dealing with the issues you do have; namely the anxiety, depression, isolation and whether or not your back is causing you some pins and needles.

Take care,

B

Love it…doesn’t he look a happy, chappy !!

Ps how much do you wanna put on Wb making some comment about his didgeridoo !!!

oh please - digeridon’t!!!

Now, now Anu and Mrs H… Candyfloss is new here. She won’t know WHAT to make of us. Behave ot I’ll have to beat you up my gladioli, possums

B