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new diagnosis

Hi all

I had a shock diagnosis yesterday and I’m worried sick. I had a ‘wearing tights’ feeling from feet to abdomen for about 14days that came on suddenly. I had an MRI brain and spine on Tuesday and a follow up for 10 mins last night. the consultant was sent thr wrong photos but said the report stated that I had

‘several supratentorial white matter lesions to include periventricular, pericallosal, temporal and peritrigonal distributions. typical of inflammatory aetiology. No posterior fossa lesions demonstrated. i also have an intramedullary lesion at T4 spine consistent with demyelinating plaque’.

I was in such shock and went alone not expecting anything abnormal. he had no pictures and i had no questions as i was dumbstruck. now my mind is racing because he said i have cis with 80% risk of MS. What do i do please? Can anyone offer perspective and even an explanation as to what the the report means?

please help

Harjit

Hi Harjit,

I’m sorry you’ve had such a fright! Rest assured you haven’t been diagnosed with MS - not yet, anyway.

CIS stands for “clinically isolated syndrome”, which is the name given to a single MS-like attack. MS can only be diagnosed if there are two or more such attacks more than 30 days apart, and also affecting different areas of the brain and/or spine.

That they’ve put the risk of conversion to MS (in effect, another attack) at 80% is high, but remember, that’s only a statistic - you are NOT a statistic, and it doesn’t mean it’s definitely going to happen!

An 80% risk of something happening is the same as a 20% chance (1 in 5) that it won’t, and that you won’t be troubled by this ever again.

Unfortunately, there is not currently any test that can tell whether you will be one of the “no further trouble” people, as it’s not known why some people go on to have further attacks, but some never do.

Most people do recover well from attacks, whether it’s CIS like yours, or confirmed MS.

So if you are still having symptoms, you should not assume that they won’t/can’t get better. Your body will start trying to repair the damage, but it can be extremely slow. If the symptoms have already disappeared, the repairs are going excellently!

What did the neurologist suggest are next steps? Does he just want to keep an eye? Sometimes it’s literally a case of being sent home and told to try to get on with life, but report any new weirdness.

MS - if it turned out to be that - is not a death sentence. It’s a very personal and unpredictable illness, so I cannot promise you’ll be fine, but I can tell you I was diagnosed about 4.5 years ago, but you still wouldn’t know to look at me. I don’t use a stick, let alone a wheelchair. One of the biggest things I notice is I do get very tired for my age, and everything seems a lot more effort, but if you saw me out in the street, you wouldn’t suspect anything. I look just the same as I always did. 4.5 years older, of course, but not noticeably ill.

If things do take a more drastic turn than they have for me, most people do cope with it. Try not to spend too much time on Google. You may read many and horrible symptoms of MS, but always remember very few people get all of them, and certainly not all at once!

Also, even forums like this one can give a mistaken idea, because people who use forums tend to be the more severely affected. That’s not an absolute rule, of course - I don’t consider myself badly affected, but I’m still here. But a lot of people who are doing well with MS are not sitting on a forum posting about it, so when you read the forums, you might get the impression a serious course is more common than the reality - just because people who are fine are off doing other things, and not posting about it!

All I can advise i to try to take each day as it comes. It would be ridiculous to say: “Don’t worry”, but worry does tend to aggravate symptoms, so do your best to keep things in perspective - remind yourself you are recovering, you are NOT guaranteed to get MS, you will cope with what happens IF it does, and not worry about it today, and so on…

There are very few lifestyle measures you can take that are of any proven benefit for MS or CIS, but there’s increasing evidence vitamin D deficiency plays a part, both in the development of MS, and possibly in the incidence of attacks or relapses. So a cheap, low risk, low hassle thing you can do is to take some Vitamin D supplements. You should not expect these to make you feel better - the idea is they may have some protective effect against further attacks.

Other than that, I think it’s just be patient, don’t overdo things (but exercise in moderation is good, not banned), and follow the guidance of your consultant.

Tina

Hi

Massive shock for you :frowning:

I had a CIS a couple of years ago and was given an 80% chance of getting MS and have since been diagnosed. You may be luckier.

Disease modification therapy is available for CIS who meet the criteria and are considered high risk although a wait and see approach is generally observed in the UK. Its not impossible though as I managed to get on it (unfortunately this took a year). Research suggests starting a DMT at onset of CIS delays the time to conversation, lowers the risk of converting slightly and slows down brain atrophy. While I did convert I have not had any symptoms or relapses since. Whether that has got anything to do with the medication or not who knows. Negatives being you could be taking a drug with side effects for no good reason if you are the 1 i 5 who wont convert anyway.

Personally, having been where you’ve been and knowing what I do now, I would suggest you find out as much as you can. The MS Trust has a good fact sheet on CIS as a starting point. Barts MS Blog is excellent and has posted about CIS quite recently.

Hi

thanks so much for the replies. I cannot tell you how much it means to me to have someone reassure and explain.

I was told in Nov 14 that I was really Vit D deficient and I’ve been taking 25 (1000iu) daily since then. Now this CIS so I’m guessing there’s a connection. I’m trying to concentrate on being stress free and improving my lifestyle. I’m seeing a wellness coach on Wednesday about nutrients etc. Thinking about Yoga too.

i need to decide whether I should get this MRI scan explained to me and have questions answered or to just forget it and get on with life. Half of my friends say get the answers and empower with info and the others say forget it. I’m weak and I’m not sure I want my the neuro to go into more details and worry me further. My gut feeling is to leave it but I’d like to understand the MRI report. How did he arrive at 80%?, where are my lesions in the brain and what’s that mean? Are they active? What symptoms can I expect etc etc

When do you know it’s an MS symptom though? Any tingle or weirdness will now panic me.

Hi again,

I would say you can safely double the dose of Vitamin D, without any risk of overdosing - especially as you do know you were deficient in the first place. UK guidelines are woefully outdated compared with the latest research, which suggests levels should be a lot higher - even in healthy people - and there may be a case that people with MS (or CIS) should be maintaining higher levels still.

Nobody really knows if low vitamin D is a cause or a symptom of MS - i.e. which came first, the chicken or the egg? But certainly, there seems to be a link. It may be a symptom, because MS causes us to use more of it for some reason, but either way, it can’t hurt to supplement. It is technically possible to overdose, as one former poster here discovered to her cost, but she was on a super-high dose. I don’t think the dose she was on is even widely available in this country - she was ordering it in from America. So you’ve really got to go to some trouble to overdose - it’s not something you would easily manage, just with ordinary high street supplements, even if you take two instead of the recommended one.

I’ve never tried it, but yoga is supposed to be excellent for MS (or CIS, in your case), yes, it should help to promote calm and relaxation, but is also good for improving balance and core strength - which are often poor in people with MS/CIS.

It is your choice, of course, but I have not really found it necessary to discuss in detail the exact location of my lesions, and what the implications are. Some lesions are what’s known as “silent”, which means they don’t produce any symptoms at all! The brain has just found a workaround for whatever it was they did, and business as usual! This isn’t always possible, but much more common than you might think. I used to know the figures off-the-cuff, but I think I’m right in saying “silent” lesions are the majority - it’s only a minority that cause symptoms. Remarkable, I know - you would assume damage anywhere in your brain would cause an obvious problem, but it’s not the case. The brain is not very good at repairing, but excellent at delegating and rerouting, to mitigate any damage. So visible lesions do not always have a very direct correspondence with how you might be affected. Unless it’s of particular interest to you, it may be all rather academic.

I do know that your lower body symptoms were probably caused by the spinal cord lesion at T4 (‘T’ is the so-called ‘thoracic’ region of your spine - the part that goes from the bottom of your neck to the start of your lower back - the numbers are just which vertebra it corresponds to - so it’s an easy shorthand for where the lesion is - a bit like a grid reference.)

Spinal cord lesions tend to be the ones that cause most havoc, because you’ve only got one spinal cord, and it’s about the width of your thumb, so if something goes wrong in there, it’s not like the brain, which can quite often find an alternative route. Messages between the brain and the rest of your body have to go up and down the spinal cord - there’s no alternative, so there’s nothing the brain can do to circumvent the problem.

I think the 80% just comes from statistics collected on people who’ve presented with CIS in the past. I think certain factors push up the risk, and one of them may be having a spinal cord lesion from the start - which you have. But don’t quote me on that. But anyway, it’s just a statistic based on what has happened to other people - it’s not that personal to you. As I mentioned previously, you’re not a statistic - you’re an individual, so percentages can’t actually predict what WILL happen to you. They only describe what happened on average - but you could be like the average, or unlike the average. Don’t read it as a prediction.

My neuro did point out to me where the lesions were on my scan, but we didn’t talk about what those bits of the brain did, or what it meant - although he probably would if I asked. But he obviously didn’t think it was essential patient information.

The only lesion I know for sure what it caused was a thoracic lesion - like you. And like yours, it caused lower body malfunction. This is typical. The ones in the brain (six of them), I’ve really no idea what they caused, and it’s quite possible nothing at all. I think there’s a chance I wouldn’t be diagnosed to this day if I hadn’t had the spinal cord lesion, which caused very pronounced symptoms. I think the brain lesions might not have caused anything very dramatic at all, by themselves, and I could still be going round unsuspecting (as I think I probably had been, until the spinal cord one showed up).

Tina

Dear Tina

Thank you for giving me that information. May I ask, is it possible for the lesion to disappear or will it always be there causing a problem. I guess what I’m asking is can more lesions grow in that area and is there are predictability?

Tbh the biggest thing I worry about is mobility and pain factor. I guess it’s just looking at worst case scenarios as one tends to do in these situations.

Having read end your reply I’m more inclined to not request further information. My symptoms are as said. Although at the end of last year I had a few unexplained episodes of anxiety where I walked out of the supermarket, felt sick in crowds etc and my friend thinks that could’ve been a first episode because it was such a short spell that suddenly disappeared. Could that be the brain lesions I wonder?

thanks so much Tina

Harjit x

Hello Harjit,

I have recently been diagnosed with MS. I was also alone at the appointment where I was told, totally unexpected they thought I had MS, so can relate to your shock. I’ve been told It just takes time to get over the initial shock, early days for me also.

Having been dx I have an MS nurse who recommended vitamin D3. She told me to take 5000 international units per day. I’ve been able to purchase on line from a UK firm selling this in a tiny one a day tablet form. The company clearly have a history with MS as every order placed they donate to a MS charity. Wouldn’t normally be happy buying these off Internet but couldn’t get the strength in the shops and MS nurse did say I’d get them off the net.

My mobility is fine and I have no pain at present and I’ve been dx, everyone is different. Sorry I can’t help with your other questions but hang on in there and try to stay positive. This is a great forum for support x

Thank you. I am dealing with it a little better having spoken to a few people about it. As you say it’s the initial shock and of course the unknown. I have been offered another appointment by my neuro and I may take someone this time. That said, I’m still in two minds whether to just leave it for 3 months as he suggested.

I might phone the MS nurse too for some advice on what changes to make. Do you take any other supplements? I’ve heard B12 could help?, calcium and magnesium, more vitamin d. Btw is that the same as vitamin D3?

I realise now that most people just manage and take one day at a time. Did you go through a period of suspecting that every ache and pain was a relapse? That’s me right now. Symptom searching paranoia…

thanks much, stay well

Harjit

Hi again,

I have never taken any vitamin supplements Harjit, I was of the opinion a healthy varied diet should be able to give you all the sources of vitamins you need. That’s changed now. But I have a friend who was unwell with numbness & tingling to arms & legs and Drs thought they may have MS and was found only to be deficient in vitamin D3. They are now on this supplement for the rest of their life, mind you they have never an MRI to check for lesions. I’m certain there is a difference between D & D3 and its D3 we need. I’ve never even heard of B12?

I don’t really know what a relapse is, I’m lucky enough to not have had severe ones yet. I think I’ve just gradually got worse, but the Dr seems to think I have had them and just not realised it. By the amount of lesions on my MRI something’s been happening.

I definitely have symptom searching paranoia since dx and I’m sure we’re not alone in this. Looking back at everything that’s happened over the last ten years and putting it down to MS, wrongly or rightly. With the anxiety caused waiting on scan results I’m thinking I must have had a small relapse I couldn’t even put a sentence together or was that just down to stress. Its been quite a relief being actually dx as some days I thought I was going mad. I knew nothing about cognition, anxiety and memory problems also being symptoms of MS I honestly thought symptoms were all down to mobility. I just seemed to have blamed everything on my age and I’m still only in my 40’s.

Good luck with your decision to see your neurologist now or later. Just remember to write down loads of questions you need answered and you write in the answers as they tell you. That’s a mistake I made not writing in the answers.

Take care x

Tina

may I ask what symptoms you had with the T4 lesion please? I’m going paranoid thinking every twitch I feel is something.

what can I expect?

Harjit

Hi Harjit,

Sorry, only just seen this was for me - wasn’t purposely ignoring you!

My lesion was actually actually at T12, or possibly at T8, depending which MRI report you believe. Spinal cord lesions tend to be less distinct on MRI than brain lesions, so I’m not really sure which location was correct, or whether I had one really long, thin lesion, spanning several vertebrae.

Whether it was really T8, T12, or spanning the two, it’s lower than T4 (they number from the top) and either is unusually low for an MS lesion, as they are more commonly found in the cervical or neck part of the spinal cord, not the trunk.

Not that there’s any special significance (that I know of) to them being lower - it doesn’t mean the MS is more serious or anything. Just a slightly atypical pattern.

As for symptoms - well, might be a little too much info here (sorry!) - but numb intimate area, and rather dulled sensation to about the thighs, I’d say. But more profound than that, completely numb feet - they moved fine, they worked fine, they felt nothing. I could have done the firewalking trick, or walking on broken glass no problem. I might have injured my feet, but they wouldn’t have reported any pain.

If I touched them, my fingers could feel my feet, but my feet couldn’t feel my fingers. There was no problem with circulation, as my feet were normal colour, and warm to the touch, but they still felt numb with cold! I described it to the neuro as: “Like having concrete socks on!”

Although mobility was mostly unaffected, I had to be very careful, e.g. on stairs, as I couldn’t feel my footing, and had to keep looking down to check what was happening. I was also quite weak and shaky, especially after sudden exertion. Once, whilst still unrecovered, I had to run for a train at Birmingham station, and got stuck halfway up a flight of stairs, as my legs suddenly decided they weren’t doing it any more. I didn’t collapse or anything. Just had to rest and hold onto the handrail, and wait for my legs to cooperate again (had missed the train, of course). I also had to be careful not to step into a scalding (or stone cold) bath, as I’d lost temperature detection, too, so dipping a toe wasn’t a safe test.

Oddly, none of it really hurt.

I did get some neuropathic buzzing sensations in my leg. These were annoying, but not painful. I actually timed one of them, and it was doing it for about three seconds every eight seconds - mechanically regular. I thought it must be related to breathing, or heart rate, or some other bodily rhythm, but I experimented with lying on the floor and slowing my heart rate right down, and holding my breath, but nothing made any difference.

Quite funny, in hindsight, doing experiments on my buzzing - I must have been quite hard up for something to do!

I now understand you can get drugs to calm this down. I wasn’t offered them at the time, and not sure if I would have bothered anyway, as it wasn’t really a pain, just an odd thing.

I’ve had tingling and numbness in my hands on waking for some years now. I’m sure this is part of my MS, but not caused by the T12 lesion. An important rule with spinal cord lesions is they ONLY cause symptoms below the site of the lesion. They couldn’t operate upwards to give you a headache or blurry eyes, for example (MS might cause those things, but not from a spinal lesion).

My spinal cord lesion or lesions were too low to be interfering with my hands, but yours, at T4, might do I think.

As far as what you can expect - from this particular episode, you’ve probably already had most of it, and should be beginning to recover. IF you had future episodes, you might have completely unrelated symptoms to any you’ve had so far, because it all depends where the lesions form - which is random. But cross that bridge when (IF) you come to it. A second episode might be months away, years even…or never!

Tina

x

I don’t know if it’s symptom paranoia but I’ve had terrible knee pain today. My leg numbers hasn’t all cleared yet. Can you get two symptoms at the same time or new symptoms so quickly. I also had my first spell of fatigue (I think!) i felt exhausted between 1-3 then fine after the school run. I just don’t know if I’m now causing symptoms. The neuro wrote to say there’s no evidence DMT works after such a mild CIS…

Hi Harjit,

Yes, you can have multiple symptoms even from a relatively mild single episode.

Think of it like an accident on the motorway - various traffic (messages to and from your brain) is now subject to delay and trouble getting through because of the earlier “accident” in your spinal cord.

Your brain is in charge of pretty much everything, so if there are any problems with messages getting to and from it, performance may be a bit erratic.

Even numbness without accompanying weakness may have caused you to walk differently, so you might just have twisted or strained the knee somehow.

The numbness can take a long time to clear - mine took almost a year. There were improvements sooner, of course. Over a period of months, the numbness eventually retreated to two small areas about the size of 2p coin, one on each foot.

Eventually even those went, but a strange thing about numbness is you DO get used to it, so some of it I couldn’t really tell exactly when it got better, because after a while, I didn’t obsessively check any more, but one day noticed it wasn’t there. So I was never sure exactly when it was fixed, because I’d stopped paying attention.

You may find it hard to imagine, at the moment, that anyone would stop noticing numbness, because it’s still all so new to you. But seriously, if you have it months, you just adapt to it, and the only surprise is realising one day it’s cleared up, but you didn’t notice.

It’s a bit like hair or nails growing - you don’t notice the change on a daily basis, but if you wait long enough, you will.

Try not to stress over every symptom. An episode can last weeks or months. Everything not yet being fine does not indicate there has been a serious complication, or that you are having a new episode.

You are right in a way that you could be causing your own symptoms. You cannot cause lesions to form - I want to be clear on that - so you have no reason to think your illness was self-inflicted by mental attitude, or any other way.

BUT stress does tend to aggravate existing symptoms, even whilst there’s no evidence it promotes actual damage. So you’ll be doing yourself a favour if you can learn some successful stress reduction strategies. The yoga sounded like a good idea.

It is unusual in this country for DMTs (or DMDs as they’re also called) to be approved for CIS, although it’s common in some parts of the world.

There are small numbers, like Humbug, who posted here, who have managed to get it approved, but it really isn’t standard practice in your situation, so I’m really not surprised your neuro said no.

That’s both a curse and a blessing. A curse because there’s some evidence early intervention reduces (but does not prevent) conversion to MS. But a blessing because once you are offered the drug route, you have to weigh up risks and side effects (they all have some), and consider whether you might feel less well on the drugs than you do leaving things alone.

Tina

x