It all started with numb and tingly legs back in December and in January I was diagnosed with Transverse Myletis, MRI’s of brain and spine showed lesions in both. I have come to terms with the fact that I have 80-90% chance of another episode and then will be properly diagnosed with MS. At the moment I am well apart from a funny pain behind left eye.
I saw a great neuro today who explained my scans and chances of MS and at the moment feel really numb about it all. He wants me to have a Lumber Puncture and has put me forward for one, he said to go away and think about it.
So I wanted to hear from you guys…I know a lumber puncture is going to be a pretty horrible experience but am prepared to do it, what I can’t decide is whether to or not? why get myself all stressed about something when I am so well at the moment??? Dr said it’s useful for when I have another episode so they know what treatment to give me, I replied to this ‘why can’t I wait to see if I have another episode before the lumber puncture’, he says it’s my choice.
I’m very confused by the “knowing which treatment to give you” comment. Not only are LPs not 100% accurate, they give no information about treatment.
If you can, and if I were you, I would be asking what will happen if my LP was negative. Exactly what difference to diagnosis and treatment would it make. I would also ask the same for if it is positive. I don’t think that it’s unreasonable for you to phone the neuro’s secretary and ask for clarification - just say you need to know this so you can decide (and be very specific about your questions - get her/him to read them back to you).
The LP procedure isn’t that bad tbh: only a tiny percentage get the headache from hell these days - most people are up and about and fine after only a few hours. But it’s an invasive procedure and should only be done when necessary. Unless your neuro has reasons that he hasn’t explained, I cannot see that it is necessary in your case.
Hi Vicky, quite a touhh call to make that, becsuse, on one hand you have the implications of diagnosis (dx) and on other limboland. If you choose to stay not dx you may always be thinking.‘what if’ where as if you go fo your lp it probably lead to dx and the care and future care you would need.There are alot of positve things that come with knowng and this site can help you through it - even if you dicide not to go ahead. Going on what the neuro said it may be better to go ahead even if just to monitoryour condition. Ultimately the choice is yours. There are many people here who have a deeper knowledge base than myself that can give better advice on your condition, personally I would now rather know. I chose to ignore my symptoms and regret it 12 years down the line. Good luck whatever way you play it. Frank.
Just posting to say that, in my experience, the Lumbar puncture wasn’t as bad as I thought it would be. I was seriously worried about it and built it up in my mind to be a big thing but the hospital staff were really good and talked me through it and it was over with very quickly. It was not at all a negative experience for me but I know that this is not the same for everyone.
My neuro was very nonchalant (sp?) about having the LP. He said I could have it if I wanted to as it was another piece of the evidence jigsaw. Since having it done - I still don’t have an offical DX but am, maybe, closer to it.
Sorry not to be able to help further. Good luck with whichever decision you make.
Hi I can’t offer any advice on having or not but I found my LP to be painless and the normal horror stories were unfounded. The scratch of the anaesthetic was the most painful thing. I followed this advice and was ok Lie flat on back for at least an hour Drink full fat coke or strong coffee, caffeine helps. But don’t have too much coffee or you get caffeine headache and can’t sleep Take 2 painkillers before procedure, just in case Take iPod and listen to music whilst on back Good luck with your choice & I hope it goes well
i was dx with TM a few months before it changed to an MS dx …but from what i read about TM i’m sure lesions only appear in spine and not brain scans…i may be wrong…
but i started with only 1 lesion in spine before a relapse which showed 2 more in brain
i did have 2 lp’s first of which was awful but when i was done right the next time it was no bother and was back on feet within 10 mins and no headache
Thanks for all your replies. Just trying to make a decision and hearing others stories really helps. From what I gather a LP will just give me a firm diagnosis, and what’s the point in that?? They can’t give me any drugs to stop it if I have MS, can they??? I am so confused and fed up! They have assigned me a MS nurse so I might just phone her and talk it through. I was feeling so positive about all this before my appointment on Friday, but now I feel back to square one! The stupid thing is I feel so well at the moment, my body feels great but I know the stress of making this decision is really getting me down. X
I still don’t get it. TM means a single attack of demyelination that caused at least one large lesion in the spinal cord. (As Baz said though, it’s normally only the spinal cord and not the brain too - where there is both, it is more common to diagnose Probable MS.)
If you’ve had the one attack, they shouldn’t be diagnosing you with MS no matter what your LP results are. This is because many people with TM (and Probable MS) have positive LP results, but they don’t all go on to get MS; on the other hand, a significant number of people with MS have negative LP results, but they do have MS.
In other words, if you have had only one attack, your LP results will not tell the neuro if you have MS or not.
(And if you’ve had more than one attack, you don’t need an LP at all!)
I might just be being cynical, but I reckon there’s more going on here than they’re telling you and I would urge you to ask them what will happen if your LP is negative. If they say that they’ll have to wait for another relapse, then what’s the point in having a procedure done that has a 5-20% chance of being negative even if you have MS? It’s not like they’re promising you anything extra if it’s positive. If they say nothing, they’ll still diagnose you, then why do they need it at all??
One thing you should check mind you: if you have critical health insurance of any type, would the insurance company be able to wriggle out of paying if you turned down a procedure that would lead to earlier diagnosis? I can’t see how they could, but we all know what they are like - any excuse!
I have had one MS-type attack back in March this year. Was very disabling but I have recovered well.
I have had a positve MRI (one lesion in brain stem) and a positive LP and have been given the diagnosis of CIS (Clinically Isolated Syndrome).
As I have only had one attack and one lesion I cannot get a dx of MS and it is possible I may never have another attack, hence the CIS dx. Fingers crossed I never have another episode!
My neuro said she wanted me to have a LP to add weight to a dx Not sure why as I still don’t have a dx so not sure why I needed the LP. If it was to add weight to a dx then no matter if LP was pos or neg I would not have got a dx because I’ve only had oe attack and one lesion.
I am just to go away and get on with my life now. Was told if I don’t have arelapse within 5 years then chances of it developing into MS are greatly reduced? Well, thanks for that Mrs Neuro. That’s a great help. All the evidence points to MS yet I am just to wait and see…
P.S. My LP was a peace of cake. Felt nothing and had no side effects. You just need to make sure you do rest afterwards and drink plenty of fluids. Your body replaces the lost CSF in half an hour or so and they only take a small amount.
Hi hope you are o.k and try not to worry about a LP yes ok everbody is different so I will just tell you my experience of a LP, and there was no problem at all I just lay onmy side and the most painful thing was the injection for the anasthetic. After tht I couldn’t feel a thing and just stayed there until she had all the fluid she needed pain free.
She said I was a very ‘Paitent’ so dont worry too much as it will help them make a more definate desiscion
Ok I am confused really confused now. MRI’s showed I have two lesions in spine and quite a few in brain, can’t remember exactly how many but neuro said too many for my 35 yrs. I did ask if the lesions are in typical MS type areas and he said they were. I have only had one physical attack back in January. Otherwise I have been well (apart from a funny pain behind my left eye which I have had for months but neuro said not a typical ms thing, not ON), so why do they think I should have a LP, what will I gain?
What I really don’t get is that I have all these lesions but only ever had one attack?? Why is that? I have tried to think of things in the past but can’t think of any thing, ie dizzy spells or numb areas??? It just doesn’t make sense!
There are a couple of reasons why you can have quite a lot of lesions when you’ve only had one attack. They are that they all happened in that one attack (it’s possible) or that some of them are old, but didn’t cause symptoms.
One of the classic signs of MS is what they call “clinically silent” lesions which are lesions that don’t cause any observable symptoms. The brain is a pretty complicated place with lots of areas working together. When one area isn’t pulling its weight, another area will compensate so that overall performance isn’t affected: i.e. a lesion in an area that can be easily compensated for causes no symptoms. Symptoms happen when a lesion is in an area that can’t be so easily compensated for, e.g. the spinal cord, the optic nerves, etc - areas that are the only bits to be able to do that job.
So it’s possible that some of your lesions are old, but clinically silent. (It does happen that someone presents with lots of old lesions, but no previous symptoms.)
The other possibility is that it’s not MS at all, but something like ADEM (a one-off attack of demyelination following an infection, virus or vaccine). This typically causes quite a lot of lesions, but they get better over time whereas MS lesions tend to increase over time. A second MRI often tells the difference between ADEM and MS, but an LP can be helpful too in that (on the whole) ADEM is negative and MS is positive (which makes me wonder if your neuro is actually trying to rule out ADEM with your LP??).
One thing that you might find reassuring: the previous version of the diagnostic criteria for MS required the patient to have 9 lesions, so although you do have quite a lot for a single attack, it’s not as unusual as you might think.
Symptoms happen when a lesion is in an area that can’t be so easily compensated for, e.g. the spinal cord, the optic nerves, etc (areas that are the only bits to be able to do that job) or when there’s too much damage in the network so that there’s no area to take on more work.
Think of a football team. A midfielder gets sent off, the rest of the team have to run harder, but 10-men teams often go on to win the match (= no symptoms). Another midfielder goes off, and the rest get stretched more than they can cope with unless they are superfit (= no or only very mild symptoms, probably not noticed). Now the striker goes off too: the game becomes completely defensive (= symptoms). Now a defender goes off - just too much and the other side starts to run riot (= lots of symptoms).
The specialised area in this analogy is the goalie. If the goalie gets sent off, there will be symptoms even if it’s the only lesion.
Did you guess that my hubby has football on the telly? LOL!
Not sure why as I still don’t have a dx so not sure why I needed the LP. If it was to add weight to a dx then no matter if LP was pos or neg I would not have got a dx because I’ve only had oe attack and one lesion.