Forum

In limbo land and not getting answers

Hi everyone wondering if I could get some help and advice from you all. In April I was sent to a&e with a suspected stroke after carrying out numerous blood tests and having a ct scan and then an MRI scan it showed up that I had demyelination. The symptoms I experienced were numbness in my left side in my arm and my leg. I couldnt walk properly and couldnt walk in a straight line. My balance was completely off and I was suffering with dizziness. I also suffered with a numbness in the left hand side of my face and the left side of the tongue. I was given steroids through a drip for 5 days. It has been 6 weeks since I was discharged from the hospital. I am now able to walk but I get very tired. I’ve been having physio to help correct my walking and also because I haven’t got the full use back into my left arm. I’m still suffering from dizziness and having headaches with a pain in the back of the head and my neck. The consultant that diagnosed the demyelination left things very vague saying that it could be ms but it was 50/50. He said that he would arrange another MRI scan in October to see if any other lesions have appeared. My original MRI scan showed up only one patch of demyelination at the back of the head. I’m paying privately to see a consultant in 2 weeks time to see if there’s anymore information that he can give me. The question I have is do the symptoms sound like ms and also is it usual to have to wait so long for my next MRI scan. It will be a total of 6-7 months from the first sign of the symptoms to the second MRI scan. Please advise me

Hi everyone wondering if I could get some help and advice from you all. In April I was sent to a&e with a suspected stroke after carrying out numerous blood tests and having a ct scan and then an MRI scan it showed up that I had demyelination. The symptoms I experienced were numbness in my left side in my arm and my leg. I couldnt walk properly and couldnt walk in a straight line. My balance was completely off and I was suffering with dizziness. I also suffered with a numbness in the left hand side of my face and the left side of the tongue. I was given steroids through a drip for 5 days. It has been 6 weeks since I was discharged from the hospital. I am now able to walk but I get very tired. I’ve been having physio to help correct my walking and also because I haven’t got the full use back into my left arm. I’m still suffering from dizziness and having headaches with a pain in the back of the head and my neck. The consultant that diagnosed the demyelination left things very vague saying that it could be ms but it was 50/50. He said that he would arrange another MRI scan in October to see if any other lesions have appeared. My original MRI scan showed up only one patch of demyelination at the back of the head. I’m paying privately to see a consultant in 2 weeks time to see if there’s anymore information that he can give me. The question I have is do the symptoms sound like ms and also is it usual to have to wait so long for my next MRI scan. It will be a total of 6-7 months from the first sign of the symptoms to the second MRI scan. Please advise me

Hi Karina, what a rotten time you’ve been having.

MS can be very difficult to diagnose. Sometime people get symptoms, have an MRI, have very clear lesions showing and get a dx… but that is the exception and not the rule. Unfortunately for most of us it’s a much longer process.

The reason why they are leaving it so long before another MRI is because they really want to compare the 2nd one with the 1st to see what changes have taken place. If they did that too soon they might not be able to see the changes, so they are hoping that by leaving it for 6 or so months they will get a better picture of what’s happening.

With your symptoms, which are actually very MS-like (which I’m sure you’re aware of) I would think that if they can’t make a positive dx one way or the other after your next MRI, they might want to do a lumbar puncture. This could give them a bit more information. If they do not offer you one, it would probably be a good idea to ask.

As I’m sure you know, there is not one single test that can give a dx of MS. They get lots of bits of evidence (including symptoms) and put it all together and try to make a dx with all of that. It’s not always straightforward and having to wait for a long time is quite normal.

For now, try and take the ‘one day at a time’ approach… and believe me I know how difficult this can be, but if you can get your head around it, it will make things easier.

I hope the private consultant is able to give you some more information and that you get some definite answers soon.

Take care,

Pat x

Thank you very much for your response Pat. I’ve been working on exercises from the physio which is helping with my arm and I have been doing cawthorne cooksey exercises which seem to be improving my dizziness so fingers crossed that the symptoms will be easing off soon and that I get a proper diagnosis!

omg Katrina I am so sorry you are having a dreadful time, I know how dreadful because in march I was admitted for a week with ??? stroke I had ct then treatment for stroke which I would not wish on anyone!! after couple of days MRI showed lesion then had high definition MRI and was ref to neuro as out patient. neuro saw me was very cross and then did MRI with contrast and now I am on day case list for lumber puncture. I had steroids to and my face improved. neuro says pretty sure is ms as responded to steroids. take a look at the McDonald criteria the neuro says its what is used to diagnose, she said next step is LP if that is positive she will repeat scan and diagnose ms. I would say you have looked at criteria and feel LP worth discussing? hope you are feeling better soon, pm me if you need to talk xx

Hi Karina, and welcome to the site

Just wanted to add a wee bit about the McDonald criteria. Basically, to be diagnosed with MS, someone needs to have at least two parts of their nervous system affected and have had at least two attacks. Both of these things can be shown on MRI. The “dissemination in space” criterion (the two parts bit) is normally confirmed by having more than one lesion in at least two areas of the brain and spinal cord. The “dissemination in time” (the two attacks bit) can be confirmed by someone’s medical history and symptoms OR by new lesion(s) on MRI.

Another MRI in six months will allow the neuro to test both of these criteria.

At the moment I would guess that you would be classed as “clinically isolated syndrome” (CIS) which means that you partially satisfy both criteria. The good news is that not everyone with CIS goes on to develop MS - that 50/50 figure that the neuro gave you is the general odds.

If you want to read about the McDonald criteria, the actual article is Polman et al (2011) Diagnostic Criteria for Multiple Sclerosis: 2010 Revisions to the McDonald Criteria. ANN NEUROL 2011;69:292–302. It’s free to download.

I hope your arm starts to get better soon.

Karen x

Hi all thank you very much for all of your replies. I’m seeing a consultant a week on Monday and am going to see where I go from there - hopefully he will request some tests rather than waiting until October! I’m hoping that the symptoms will slowly disappear as its the frustrating part of not having a diagnosis so therefore not getting any treatment. I’ve been doing the cooksey cawthorne exercises to help with my balance and the dizziness which seems to be helping a bit. I guess where I am now is assuming that it’s ms and then going from there because then at least I’m more prepared. One thing I’m not sure of is that I picked up a copy of my MRI scan from the hospital so that I can take it along to the consultant and I had a look at it last night - the thing is I can’t really see the lesion as such. After looking at other MRI pictures on the Internet they seem to have spots on the MRI scan - mine doesn’t look anything like it- can anyone advise on this???

I can advise on MRI, but it’s a bit tricky without seeing it

The easiest way to see a lesion is probably to look for the scans that are labelled FLAIR. Then you want to go through each image slowly, looking for paler patches that look like they don’t belong there, i.e. they don’t “join” with more paler stuff on that image or on the images either side. A larger lesion will often be over more than one image - the trick is to look for something that is on its own / not joined up with a larger area.

There are bits of the brain that it is normal to have white patches, e.g. at the tips of the lateral ventricles, the lakes of fluid in the middle of the brain that show up as black on FLAIR scans. So don’t panic if you see quite a few - they may be quite normal. MS lesions are typically ovoid and have smooth edges, but they can be a funny shape if they are right next to the outside layers of the brain (e.g. sometimes like a U shape). What they look like also depends on how the scan has been done so they are not always obvious. Also, MS lesions are IN the brain. White spots around the outside of the brain, near the skull, are blood vessels and nothing to worry about.

Hth!

Karen x

Hi Karen thanks for the reply. None of the images are labelled with flair. I went through each image and my dad had a look too and neither of us can figure them out. The consultant showed me when I was in hospital but I was so ill that I didn’t take it in at all. Is there any way I could email a picture of it so that you could look?

When we have MRI done, we have a mix of different types of scans. FLAIR is one type - normally it will be in the folder name, e.g. T2FLAIRax. When you open it there will be lots of images, going through the brain in slices. The file sizes are normally too big to email, but if you know which image your lesion is on and you can copy and save it as a jpeg or a powerpoint slide or something, then I can have a look for you. Let me know and I’ll pm you an email address.

Kx

I’ve found the flair entitled file and have saved the image to the computer. It doesn’t look the shape that you mentioned and it’s bigger than I thought. Would you mind having a look at it if I send it to you? Would be great to know I’m looking at the right thing

I’ll send you a pm.

There’s a few other symptoms that I had at the time which I forgot to mention and thought maybe you could shed some light on whether these were typical with ms. I had a virus about 2 weeks before symptoms properly happened. Then the first of the symptoms after the virus was dizziness and then loss of co ordination and balance. I went to the walk in centre on a thursday and they initially thought it was labrythinitis and prescribed me stemitel. I was vomiting as well and over the course of the weekend things seemed to get much worse. By the Monday I went to the doctor who thought it was a stroke. Thats when they ran some tests and they did an MRI the next day and that’s when the consultant said it was demyelination. He said that it was 50/50 as to whether it was ms and said I could have steroids but didn’t really recommend them. I decided against taking them and then was admitted back into hospital a week and a half later when I got progressively worse and couldnt keep any food or water down. I was then put on a drip of fluids and was also given steroids through a drip for 5 days. The thing that I’m not sure of is that I was vomiting for about 5 weeks and got an endoscopy that didn’t show up anything other than gastritis. The vomiting stopped thankfully a few weeks ago but does the vomiting fit with ms? Also a few peoples posts on here say that once they’ve had the steroids that their symptoms seem to improve drastically or completely resolve - is that normally the case as the steroids didn’t seem to do that with me - they made some difference which is clear but not a quick difference it was a while after taking them that I seemed to improve bit by bit with certain symptoms.

Sent you an email about the rest Karina, but the steroids bit is extra… As far as steroids go (and everything else about MS actually!), we are all different: some people respond really well and really quickly through to some people (like me) who don’t seem to respond to them at all. They stay in our systems for many weeks though so it’s not unusual to have such a gradual improvement that it’s impossible to tell if it’s the steroids working or our bodies healing naturally.

Saying that, how people respond to steroids can be a clue about what is causing the symptoms as some conditions respond better than others.

Hth.

Kx

Hi Karina, when I had my first symptoms which were very much like yours, I was taken into hospital with a suspected stroke. Six months later I was dx with ms after 2 MRI 's and a lumber puncture. My first MRI showed numerous lesions and on everyone since there have been more so it can be a waiting game, I think my dx was fairly quick compared to others. Hope you get some answers soon. Karen x

Hi Katrina

I had symptoms of numbness in both hands legs and stomach at first and after the usual blood tests at GP was referred to the Neuro. I had MRI scans on brain and neck & spine but then called back for another MRI with the dye. The last MRI showed one suspected lesion on the top of my spine. My Neuro has said that we should repeat the MRI in 3 months time to see if further lesions have appeared, so similar to your story but only waiting 3 months.

It isn’t nice to continue with life always wondering what the next scan will show.

Hope you get to hear something soon

Emma x

Hi Karen (rizzo) thanks for the email and also thanks for the information on here you’ve been a great help and have been invaluable to me giving me help and guidance on everything! Hi karenwolf - thanks for the post- how are you doing now? Its catch 22 because it’s not a good diagnosis but it’s probably a relief getting the diagnosis. I think my frustration with it all is that my consultant was just very vague with everything and as I only had 1 lesion on my brain and there was so much inflammation he just kind of did nothing and said that they would contact me for a further MRI scan around October time and gave me some vitamin d tablets to take daily as my vitamin d level was so low. He didn’t even give me a definite appointment for October said it would be around then!! Hi Emma - at least it’s positive in the sense that you only have 1 lesion and it’s good that you only have to wait for 3 months. I don’t know why they don’t do a repeat in 3 months time for everyone with symptoms as surely it would show some difference within that time. How are your symptoms doing now? Good that they did an MRI of your head neck and spine- they only did MRI of my head. Had an X-ray done of my chest as had been coughing for quite a while and vomiting for so long

Hi krissy - if you have all the symptoms and have had them for a whole and the GP keeps fobbing you off if I was you I would go to the doctors again and request to be sent to a neurologist and then if they don’t then I would demand to see one or if you can afford it then pay privately. It’s about £150-220 to see a consultant but it’s worth the money I say in order to see someone that knows what they are talking about!

I am sorry you are having such a worrying time. Yes, it is normal (and regarded as correct) to wait and see when someone has an isolated attack like yours. If you were to run into further trouble, then the approach might change quite quickly. But the hope will be that you have no further trouble, and I very much hope for you that this is so. Alison x

Hi Katrina, I am not doing too bad thanks, I was dx 6years ago. I am on disease modifying drugs but have had a few relapses and just waiting for an app with a neuro. Try and keep positive I know it’s hard when your not certain what’s wrong. I am always around for a chat, you are welcome to pm me anytime. Karen xx