Hi all. Wondering if any knowledgeable people could maybe offer me any advice? I have found myself being tested for MS without expecting or ever considering it as something I would ever be thinking about. Anyway have had an mri that showed white spots. This was then followed by an evoked potentials test and a lumbar puncture 2 weeks ago. I was sent a review appointment with the neurologist again at the same time as I was sent the appointment letter for the lumbar puncture. So his aim was clearly to share the lumbar puncture & evoked potentials tests results with me at this next review appointment. I asked when having the evoked potentials test if the lady operating the screen thing would have any idea of how things read/how I did - she said my test looked fine…so thumbs up there & was relieved! It was after that that I then got the appointment letter for the lumbar puncture and review with the neurologist. I have been to my gp now since I had the lumbar puncture done & they said the results they are able to see all look okay, glucose, bugs/bacteria, protein count & I think she said anti bodies as well. But she did say she wasn’t able to see anything about oligoclonal bands. Which is what I had been explained they were looking for. My question is - I don’t really understand the whole oligoclonal bands thing - if my protein count results looked “normal” to her, Is it likely my lumbar puncture results are going to suggest I don’t have MS?? Thank you so much in advance to anyone who answers!
Ssssue is better at answering this question, something on lines if you have oligoclonal bands you generally have MS along with other tests, if you don’t you still can have MS but with your lumber puncture, MRI blood results and different symptoms that the neurologist will ask you. they can say that you have it. It doesn’t sound like you have it but I am not a neurologist. Which would be great for you. There is one thing only a neurologist can say that you have MS. No other doctor can. I wouldn’t think that your GP could say what your results are. I have had blood tests lumber puncture along with the MRI and the examination that the neurologist does when you first meet him. I don’t know anything about any of the tests that I have done with the neurologist only the MRI and he wants a second one. So at the moment I am waiting until April. Good luck Kay
Hi Kay, thanks for the reply! What is it that makes you think it doesn’t sound like I have ms? Do those lumbar puncture results sound like they make ms unlikely? I know GP’s can’t diagnose. The GP I saw since my lumbar puncture isn’t a regular Dr I would see. I don’t think she even knew why I had had a lumbar puncture. I just asked her if there were any results available yet while I was there, she took a look and said protein count, glucose count, check for bacteria all look normal. Said she’s no expert at reading lumbar puncture results but what she could see looked okay. I asked her about oligoclonal bands and she said that wasn’t there, and that more specialised tests could take a while longer. I just know that oligoclonal bands have something to do with proteins- I think. So I’m wondering if you have a normal protein count, is it likely everything will be normal on the oligoclonal bands front too. I have a review with the neurologist now in May anyway so I’m sure I’ll find out then but I just don’t like having things hanging over me and I’m trying to pre-empt what the outcome will be. I too have had an mri - brain & c-spine, bloods, visual evoked potentials test and now this lumbar puncture. And yes like you the tests they do when you’re with them. So I sympathise with you with all the testing. Good luck for April & whatever that may bring for you!
I know Kay has said I might be better at answering your question, but really, I’m not.
Yes, as far as I know Oligoclonal bands have something to do with proteins, but as for what that is, you need to get the answers from a neurologist rather than either a GP who knows very little, or a layperson who knows even less.
You may find that you get your answers prior to your appointment, if your neurologist reports on the various test results to your GP, you will be copied in. Otherwise, as May is still some way off, you could write to the neurologist and ask for results. You may not get them, but you never know. As your (can I say, slightly stupid GP) has given you some results from the LP, without actually understanding why you had the test or what the results mean, you have good reason to ask for early results from the neuro.
Hopefully you’ll get some more concrete news soon.
Thanks very much for this Sue. I don’t think I’ll receive anything about the results prior to my review as I haven’t been copied in to any correspondence between neuro & GP so far. Think I might try giving the neuro’s sec a ring this coming week. Though she’s pretty hard to get a hold of & I’m also fairly sure she’ll say she can’t give out any results and tell me that they’ll be discussed with me at my review in May. Anyway. What will be will be & I’ll find whatever that is out in time I suppose! Thanks again for the advice
I have been recently diagnosed after MRI results confirmed brain lesions and neuro said he didn’t need to confirm with lumber puncture ( so perhaps they are uncertain of your diagnosis and need clarification),which is great that they are checking further.
Although I was only formally diagnosed last yr I have had symptoms for several yrs with GP putting it down to anxious personality and menopause ! (Infact I started to believe I was neurotic).But although the diagnosis is not what I had planned or envisaged I almost feel relieved and I am less anxious generally knowing that I am not neurotic after all !
I have no treatment to date but have Ocrevus infusion booked for tomorrow at QE Birmingham .
All the best try not to worry too much and try not using Dr google too much (which i initially did )carry on with day to day and try to reduce stress I have found mindfulness and yoga exercises helpful.
I think you’re right that the neurologists secretary won’t give you any information. But a way to get around this is to ask if you can send an email to him/her which could then be forwarded to the neurologist.
In your email you could explain that various people keep giving you little bits of information, but that the full picture would be far more useful to you. If you were to ask directly what the results of the lumbar puncture were, and of course, what these results mean, it might give you some reassurance that an MS diagnosis is (hopefully) less likely.
After all, to the neurologist, or anyone who is not directly affected, May seems like it’s just around the corner, but to you it’s 2 months away and that can seem like a very long time to be scared and apprehensive about your future.
Thank you both for the further advice & input. Kerste my mri showed a periventricular white matter hyperintensity & “several other small subcortical white matter hyperintensities”. The neuro explained it to me as the scan isn’t completely normal and that he suspects they have been caused by inflammation. He then went on to explain that one of the things he would be looking for is MS. I’m 27. I also don’t smoke and rarely drink. Think these are the reasons the scan isn’t “completely normal” for myself. But the lesions were noted as “non-specific” on the radiologist report, I think this is why I have had further testing, as he can’t be sure of the cause from the scan alone. He also explained they could be caused by migraines or b12 deficiency. My b12 has been checked and it was in fact low. And I have also been getting unbearable headaches- not a neurologist though so I don’t know if they are “migraines” or not. Basically he let me know there was something making him suspect MS - as did the initial neurologist who sent me for the scan. Which came as a shock because although I was worried something was wrong with me at the time, MS wasn’t something on my mind. I actually was worried about my heart/possibility of a stroke. But he has also let me know the lesions on the scan could have a different cause. I actually am an anxious enough type person. And I’m fairly sure all this has probably increased my anxiety at times. Would quite like it all over with to be honest. But I do feel now that I must be toward the end of his investigations as I’ve had mri bloods evoked potentials test & lumbar puncture. So just looking forward to getting the results and the whole thing behind me fingers crossed! Thanks again
Its limboland at it’s best or worst more like it. MS you can get anytime in your life, your lesions that you can get sometimes by just living the other is by demyelinating disease and it is the neurologist who can spot the difference. I know that I have some legions in my brain but he wasn’t worried about them it was the one which could be down to demyelinating disease. The sad thing is that you need to have more than one to be diagnosed, which means a new set of symptoms. Not fun or fair. Good luck
can you afford to see the neuro privately? i did saw him in TWO DAYS.
The GP can only tell you medical results of the LP, like they said the more complex results might not have been in.
evoked potential has no right to say anything its not up to them. The guy doing my VEP tests never told me a thing. Both 2008 and 2015 were positive.
Negative LP does not mean no MS. LP does not diagnose MS it eliminates other diseases that mimic MS.
So for now if you can go private (its not as expensive as people think), or just wait patiently until May. Its only 2 months away. It took 16 years for me to get a diagnosis. lol. but i got there in the end and in the grand scheme of things it hardly changed anything.
Thought I would just give you all a wee update. Phoned neuro sec on my lunch today at work. She is on annual leave until tomorrow. I honestly find her so difficult to get a hold of. I’ve hardly phoned at all throughout this whole process but any time I have I haven’t been able to get her. Another secretary was able to view & tell me that my results have been completed and a letter has been sent from the Dr who did the lumbar puncture to my neurologist who ordered it, detailing all the results. I don’t know why my gp didn’t look at that letter instead of the individual results. Anyway. She said she can’t tell me what it says (which I knew anyway) and that she wouldn’t understand the results to explain them anyway even if she was allowed etc etc. But to get in touch with my own neuro’s sec for advice about when/how I will receive them etc. So phoning her again tomorrow. As I said though she’s very hard to get a hold of. I imagine I will just have to content myself with waiting until May to find these out. And possibly consider writing in the mean time as you suggested Sue. Thanks very much again to you all!
Phoned again today, was told my neurologist will discuss whatever results there are with me at my appointment in May. I asked was there any way at all I could see any results before then and was just told no. So that’s that…Lol. waiting until May it is then. Good luck to you all with your treatment or ongoing investigations. This is a very supportive site.
Hi, sorry 0 123 that you were unable to get answers and have to wait until May ( you could always make a formal complaint).I must admit when I had my MRI I had almost dismissed the results thinking results would be normal and several weeks later I received a letter in post with the results which took my breath away and sent me into melt down. A LETTER so impersonal and medical jargon that I did not understand.However I was lucky( as my sister a matron at the same hospital for all of her adult life) went in a spoke to ms nurse and she arranged to see me a week later and also seen promptly by neuro consultant who actually apologised for letter content.
But you no what… MS services in the nhs move very slowly (im not having a dig because were lucky to have our nhs )MS is not a death sentence and there is so much more available treatments now.I have met a few of lovely people recently all with MS and having that contact and discussion with others has helped me to absorb information which has helped me to make choices and also changes to my life.
I received my first half dose infusion of Ocrevus yesterday ( worried and stressed about this decision) but today onwards and upwards i feel Ok no horrific side effects only sore throat ,some mild itching and headache (early days I know) paracetamol and piriton helped. Next infusion 25th March and thereafter 6 monthly if all continues well.Well im up today ,feel ok and on this site feeling positive.
Again try not to catastrophise (I now thats not easy I DID IT AND IM OK REALLY even with some adjustments to life ) listen to your self ,rest when you can ,reduce stress ,take vitamin D.You will get through this whatever .