Neuro today - results of LP, VEP and blood test...

New diagnosis and before diagnosis
1

Well, my neuro said that they found an area of inflammation in my spine from results of the LP.

My VEP and bloods were all normal. I had loads of those little bottles of blood taken and I asked if they had tested for Vitamin D3 and B12 deficiencies and she said they had and all were normal. Good news :slight_smile:

So she said we can put my symptoms down to the inflammation in spine and brain stem as shown by the MRI scan and LP.

She then went on to say that some people have what’s called a CIS (I knew this was coming), and that she would be keeping an eye on me and has boooked me in to see her in 12 months time.

I asked if I should be taking vitamin D3 supplements and she said yes and that she’ll be sending me some info about it she has just got some new stuff in but didn’t have it with her. She didn’t actually say how much of a dose I should take though.

She also said that if I have any new symptoms at all, or any worsening of symptoms, I am to skip my GP and waiting lists, phone her directly (or her secretary) and she will see me.

I asked if this was an official dx and she said it was.

I asked how likely this is to turn into MS and she said that if I do not have a relapse within the next 5 years then it is much less likely to develop into MS, according to statistics etc.

Overall, I feel relief. I think I can try and put this to the back of my mind now and get on with my life.

I hope I never have anything like this again. If I do, of course, I am prepared. It will always be in the back of my mind but it can stay there tucked away for now.

I am actually really happy with the speed at which everything has been dealt with. I’ve had all the tests needed and am happy with the outcome, well not happy that any of this happened in the first place, but happy that I have the answers to my symptoms, even if the future cannot be predicted.

Of course, if I do get anything worrying happening, I shall be straight on the phone…but finger’s crossed, I won’t need to. Am trying to keep optimistic.

What I wanted to ask (afterwards of course - isn’t that always the way? lol), was how is a inflammation detected from a LP? Would this be the banding? Or lesion? Would it have been picked up if I had had an MRI of spine and brain, and not just brain? I get a little confused with all the terms - banding, lesions, inflammation etc.

2

First of all, congrats on getting an answer!

I think the neuro must have got her words muddled or not been very clear because there is no way of telling where the inflammation is from the LP (that I know of anyway!). All it shows is whether or not there has been an immune response to an attack on the CNS. Oligoclonal bands are a kind of protein; an antibody. If they are in the CSF but not in the serum (from the blood sample) it is a positive result, as far as MS is concerned.

I would imagine that your symptoms and the MRI results are enough for her to be able to say where the lesions are and the LP supports it being an MS-type of attack.

Not that it really matters though! You have a diagnosis; so the details are neither here nor there, especially if it never happens again (fingers crossed!)!

Btw, 5,000iu a day is the most commonly recommended dose for D3 I think.

Karen x

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Hi Midnightmoonxx So glad you have an answer xxxxjenxxxx

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I’m so pleased you got a diagnosis you sound like you have a very good neuro. Let’s hope it never happens again Xx

5

I’m so pleased you finally got an answer. Fingers crossed nothing more and everything remains stable.X

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Hi midnightmoon

I am so pleased you have an answer and that you also have the reassurance you can phone your neuro if anything else happens.

Must be a great weight off your mind so now you can recover and get back to ‘normality’.

Lots of love

Paula xx

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Great to get a plain speaking neuro…Onwards and upwards.

Pip

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Thank you very much all :slight_smile:

Yes, she seems a straight talking neuro, which I really like and appreciate. No stalling nonsense or going all around the houses to get to one simple point.

Karen, I think maybe I wasn’t listening properly or maybe she explained it in a way I wasn’t clear about. Either way, it was a postive LP and positive MRI and that means we have found the cause of my symptoms - which is exactly what I wanted.

Why it happened remains a mystery right now but I am sure the reason (If it is MS) will rear it’s ugly head one day - and if it doesn’t, well that’s even better!

Hope no one will mind if I continue to stick around from time to time. I am lady with a lesion after all! lol.

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Hi Midnightmoon

really pleased for you that you have an answer, and probably as important that you have a neurologist that you respect and have a rapport with.

When did your incident happen? I came on here in May and I wondered how long its taken in time for you to get to this point?

Also…have your symptoms calmed down? I’m curious because I started to get much better and then had a horrible “relapse” which lasted 10 days but I am now much improved

Sorry for all the questions - but thats exactly why you need to stick around lol :slight_smile: x

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Hi Gillian and thanks. Don’t worry about the questions. Am happy to help if I can.

My story (I’lI try to keep it brief! lol):

I had a terrible attack in mid March this year (my first and only one to date). Started with numbness and pins & needles all down my left side. Went to GP who sent me straight to the hopital for brain scan. CT was clear but was referred to a neuro. In the meantime I was getting progressively worse by the day to the point that two weeks into the attack I couldn’t walk, cook, clean, wash or even stand due to extreme weakness. It was like my brain had disconnected from my body or like a power switch had been flicked off. I also had awful double vision that made me feel sick and dizzy. I had to keep my eye patched just to be able to get around. My kids had to help me cross the road because I was so disoriented I couldn’t see when it was safe to cross because all I could see was traffic coming from all angles. A real nightmare.

I was terrified and alone with two kids with no famaily nearby. The kids had to bascially take over my role and we were all very worried.

I phoned my GP and said that I was really struggling so the neuro appointment was taken up a level to emergency. I think I got the first appointment in May and by this time I was recovering well.

Neuro made an appointment for me to have an MRI a couple of weeks later. Then I went back to see the neuro for the results which showed one lesion in the brain stem. She said she would send me for a LP, more exstensive blood tests and VEP. I had that done about a month ago. Had my neuro appointment yesterday for results. As above; LP showed some inflammation and all my blood tests and VEP were normal.

At this point in time, I am now dx with CIS and just have to wait and see what happens now.

For now though, I am going to put it behind me and move on, even if it will still be in the back of my mind, I can’t allow it to consume me.

Right now, my symptoms are very minimal. Only slight pins & needles feeling in my left hand and foot. The horrible ‘MS Hug’ has gone and my sight has returned to normal. I am back at aerobics classes as I was before and although my strength is not fully back to normal, it is near enough. I sometimes feel lethargic and on days like that I don’t do much at all and take it easy.

I asked the neuro if these symptoms would ever go away completely or is this as good as it gets now and she said that there was no way to tell. I really knew that anyway but just wanted to hear it from a professional.

I am obviously scared because of how bad it got and don’t ever want to experience that again but I can’t allow it to take over.

I have actually booked a week’s holiday in Gran Canaria next month! I so hope I am well still! I asked my neuro about my dx and do I need to get specialist travel insurance and she said no. I had put off the insurance until my appointment but if she says I don’t need to disclose it then it’s good enough for me.

Hope that helps.

What are your symptoms? Have you had any tests or seen a neuro?

11

Midnightmoon, thank you so much for replying…your story is a real comfort to me.

I had a massive cold after returning from Portugal which turned into a chest infection that mutated into the 2 week episode that you descibe. The particular bit that really resonates with me was crossing the road holding my husbands hand after the brain scan and cowering and refusing to cross because it felt like the traffic was coming at me. When I started 2 try and get out again i took a pack off the supermarket shelf at eye height and I jumped because it was like it was going to hit me in the eye, which in that split second I knew was impossible as I had the pack at arms length. Verrrry surreal, odd and scary.

Hospitalised Mid March CAT scan clear and referred to Neuro like you, but a clean MRI so neuro went down route of checking for Lupus and auto immune etc and described the event as Transverse Myelitis. Results all clear.

I remained very weak and fatigued and still not driving as limbs ache too much, so off work still sick and took a horrible relapse and went nearly back to stage 1 but choking on food which really upset me as I love food.

Luckily it only lasted around 10 days and I have lost the swallowing issues and almost back to where I was before the relapse. Neuro redoing brain/spine MRI’s but I am thinking i may need to adjust to a new normal as you describe.

I also think your idea of putting it behind you and moving on is very healthy. I was a single parent for many years and I think you are fantastic in the way you’ve held it together, I’m not sure that I could have.

I know it sounds mad, but the “relapse” wasn’t as scary as the first event so what’s to be scared of?

Thanks so much for your answer, it’s really appreciated xx

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I hope you can get to the bottom of all your symptoms Gillian. Sounds pretty awful. I forgot about the swallowing difficulties that you mention as I had similar for a week or two. Everything I swallowed felt like a thick, lumpy sludge that was difficult to get down and drinking liquids often resulted in me spluttering because it kept going down the wrong way - or that’s what it felt like.

I also had some of the weird spacial awareness stuff going on. Wasn’t quite sure where the steps were, or doorframes etc. It seemed that I would misjudge things. I remember trying to make coffee and would miss the cup and pour spoonfuls of coffee and sugar on the work top right next to the cup. haha!

I still can’t walk toe to heel in a straight line very well but has much improved as I couldn’t even stand up when I tried to do it in the neuro’s office. I had to hold onto door frame.

I have woken up with flu-like symptoms this morning which is worrying me as holiday is only 2 weeks away so I hope I will be fine by then.

Hopefully your symptoms will fade soon. I was in a rush to get better and I would get cross with myself because I felt OK in my head but my body didn’t want to do the things that I wanted it to. Very frustrating, but I did recover well and hopefully you will too.