I have been on this site for around one month but never posted, i have found that all the information and advice given is excellent and so valuable to me while i am going through this stressful period!!!
I am currently under going tests to see if i have MS, i have had a brain MRI which shows 5 lesions which the neuro said is consistant with MS, i’ve been poorly for approx 3 yrs ish ?? with sensory symptoms but they seem to be getting worse and dont ever fully go away now. I’ve been sent for a lumbar puncutre to apparantly confirm MS!
My question is - if the lumbar puncture is clear what happens next?? will i be sent for another MRI/lumbar puncture at a later date?
Usually I am so positive about everything but for the last two weeks I feel that everything is getting on top of me… guess its just the stress of waiting around for the results
Well done for jumping in - reading posts is helpful, but there’s nothing quite like being able to write things down and “meet” everyone properly
The diagnostic process is very very stressful, but at least you are hopefully on track to finding out for sure what’s causing all those problems and to getting proper support.
Lumbar punctures aren’t 100% reliable with about 5-10% of people who have definite MS having a negative LP. So, if your LP comes back negative, your neuro will probably consider this and decide whether or not it throws any significant doubt on the diagnosis. If your history and MRI are strongly suggestive of MS, then he’ll probably not be too bothered.
If he is bothered, I’m not sure if he’d send you for another LP at some future date. I know that once someone’s LP is positive for oligoclonal bands, it stays positive forever, but I’m not sure if the same is true of someone who definitely has MS, but has a negative test (i.e. if it always stays negative or can change).
An LP isn’t necessary for diagnosis though - it can be done on the results of the clinical exam and the MRI. So I guess it all comes down to how confident the neuro is that it is MS.
Another MRI might be done if you haven’t already satisfied the “dissemination in space” and “dissemination in time” diagnostic criteria. A new lesion ticks the time box (a new attack). A new lesion in a new area basically ticks both boxes (a new attack and a new part of your central nervous system affected).
I know it seems to take forever, but it’s really important that they get the diagnosis right. So hang in there! and let us know how it all goes.
Thanks for the info Karen, you are sooo right its so much better when i am posting and getting to ‘meet’ people.
It does seem to take forever, I have been going to the Docs for a few years now and before all of this I never went!
I have had my LP approx 2 weeks ago went OK with a little discomfort but no headache afterwards, thank god
I guess I will just have to wait and see what the neuro thinks when i get the results back from the LP.
Usually I really don’t stress about anything but I think it has finally hit me that yes I may well have MS I only really started stressing once I had been to the hospital for my LP, the reason was because the doctor who gave me it was reading my notes and said “you are here for diagnosis so you can get on with your treatment” this was shocking to me as I thought he would say something like we are just here to rule MS in or out, silly I know to let that comment stress me but its the way he said it as though he was certain I have MS!
Can you answer me another question? - when I got my results from the neuro from my MRI he said that if it is MS it’s relapsing and remitting then he went on to talk about treatment (DMD’s), I have been looking in to these and the neuro has confussed me - he mentioned that he would only think about these if i lose the use of my arm/hand/leg/foot etc. but i thought these were used to lessen the relapses, why would he say that? do some neuro only use DMD’s when MS makes you disabled??
How you’re feeling now is exactly how I felt when I was at this stage of the diagnostic process. In fact the neurologist that performed my LP said almost the same thing that yours did! But as spooky as that is - don’t read anything into it. It’s all very much a waiting game.
My LP went okay too - no pain or monster headche. But it was also when I started to really panic and stress out too - and like you, normally I’m really laid back and take things on the chin as and when they come along, so it stunned me that I reacted in that way. But the diagnostic journey is an emotional rollercoaster and it’s perfectly normal to feel at odds with yourself.
If your neuro has already mentioned the possibility of dmd’s then check out the ms decisions website - it explains each one and if you do have ms and are offered dmd’s, the website can be really useful in helping you to make a decision on which one to go for. There’s evidence that starting on dmd’s as early as possible is beneficial so I don’t know what your neuro is talking about. Is he an ms specialist?
For now try to stay as calm as possible - not easy I know - but it helps. Wait and see what the results are. A negative Lp doesn’t mean it’s not ms, that’s something I found really hard to get my head around at the time because I thought “well, what’s the point in having it then?”. But for me it came back positive and was the final piece of the jigsaw - so it was worth having it done. If yours comes back negative then you will more than likely have another scan done at some stage. As Karen says an LP isn’t essential in diagnosing ms - but it can help.
Fingers crossed that the results come in soon - let us know how you get on.
One of the problems with the NICE criteria for getting onto DMDs is the very woolly phrase, “two clinically significant relapses in two years” with absolutely no guidance on what “clinically significant” means
Unfortunately that means that some neuros interpret it as “disabling” and rule out sensory relapses (which is plain stupid as sensory relapses can be terrible as well as leaving permanent symptoms). From what I’ve read on here, some PCTs also appear to lay down strict rules, so it can be really hard to get onto DMDs at all.
What’s worse is that the injectable DMDs don’t really do anything for existing symptoms. So if a neuro makes someone wait until they have two disabling relapses, chances are that that patient is going to be much worse off than if they had been started on a DMD sooner. (There’s a good reason that most countries start RRMSers on DMDs asap.)
You should certainly try and argue your case (e.g. I have had X relapses in X years; the next one could be badly disabling and DMDs don’t address existing symptoms; DMDs delay the onset of disability if started beforehand; surely the purpose of DMDs is to keep the patient as well as possible - I want to do everything I can to stay as well as possible).
The other possibility is moving to an MS specialist, if your neuro isn’t one. MS specialists may have a bigger budget and more clout to get you onto DMDs. (I deliberately chose mine because he was the guy in charge of DMDs in my PCT.) I guess you’d have to be open (and careful!) with your neuro and just ask about this - I’m not sure how else to find out!
Debbie - That is a bit wierd both of us had the same comment but your right I shouldn’t read too much in to it and I will try my hardest to stay as calm as possible (not easy :() When you said its perfectly normal to feel at odds with yourself you hit the nail right on the head that is exactly how I am feeling right now.
If the LP is positive I will certainly look on to this web site to help make the decision about DMD’s (thats if they are offered of course).
I do find it a bit strange that they need to do a LP as its not conclusive! but as you said if its positive they have the final piece of the jigsaw, so yes I can now understand more why they would do it…
As for my neuro, he is not a MS specialist he is a epliepsy specialist so this could be the reason for the DMD argument I guess.
Karen- I find it absurd that all Neuro’s and PCT’s don’t use the exact same guidelines when deciding who to give DMD’s!! Its very scarey to think that if they left me with no treatment they could make it progress much faster than it could of done.
It makes so much sense when mentioning that some neuros don’t class sensory relapses as disabling as this now makes sense about my neuros attitude, he said it would be JUST sensory MS I really wanted to hit him I realise that I am lucky, i don’t have a physical disability but living with permenant sensory symptoms is very hard work and it does have an effect on my life, (especially when I have a full time job, children and house work, to get on with).
I will so argue my case about DMD’s if the need arises - If I do have MS I have already made the decision to move to another neuro because as mentioned to Debbie mine is a epilepsy Specialist so I will ask to be referred to the MS Specialist in my area!!
I will keep you both updated on my progress with the dx, not sure when i find out still waiting for a appointment date to get results from neuro
The MS Trust has a Map of Services on their website. Use the pull down tab to select MS Specialist Centres and pop in your postcode. Then just click on the flag on the map that’s nearest you and it tells you who the ms specialist is and which hospital they’re based at. You can also search for other specialist services in your area too from the same menu. Maybe worth having a look.
Once all your results are in, if your current neuro does think it’s ms - then hopefully you’ll be referred to a specialist anyway but there’s no harm in checking where your nearest one is in the meantime. It’s also worth mentioning that not all neurologists can prescribe dmd’s, so that’s another reason to find an ms specialist if it comes to it.
Once all your results are in then with any luck things will be a lot clearer as to where you go from here. DMD’s aren’t designed to help with the day to day symptoms that you have, they’re more of a longterm treatment that are aimed at reducing the amount and severity of relapses by approximately 30%. Obviously this does vary as do all drugs. There are also lots of meds available to help with the day to day symptoms too, it can be trial and error to find the right one for you but they’re definitely worth looking at if your symptoms are persistent and particularly troublesome.
I found the time between having the LP done and receiving the dx one of the worst. I already knew that the chances of it being ms were pretty high so when I actually received the formal diagnosis I took it really well. It felt like the world had been lifted off my shoulders…until a few weeks later when the news really sunk in. But with friends and family behind me along with my colleagues and everyone here I got my head around things and took each day as it came. So whatever diagnosis you receive, take your time in getting used to the idea. Rest assured that there will be help and various services available to you.
In the meantime try to carry on as normally as possible and look after you as best as you can. Things will come together, even if it doesn’t feel that way now.
Good luck Carla and feel free to pm me if you wish
Just one more thing that you will have to think about, if you drive a car, that is:
When you are told your diagnosis; if it is MS make sure you ask the neuro if it is OK for you to continue to drive.
You MUST notify both the DVLA and your Insurance Company about the diagnosis and tell them that you have been given the OK to drive.
The Insurance Co may posibly acknowledge your letter (but that’s OK, you have told them).
The DVLA will send you another form to fill in, and take ages to make a decision, and check with the neuro, and end up giving you a licence with a three year life. They may ask you to return your old licence befor they give you a new one - just forget to do this. They will tell you that you can use their letter as a clearance to drive while they make their decision - I don’t think a car rental company anywhere will accept this as proof that you have a licence, and I had visions of trying to explain it to a French Autoroute Patrol - don’t think they would accept it without a formal translation.
If you notify both of these - you need have no worries.
I only really started stressing once I had been to the hospital for my LP, the reason was because the doctor who gave me it was reading my notes and said “you are here for diagnosis so you can get on with your treatment” this was shocking to me as I thought he would say something like we are just here to rule MS in or out, silly I know to let that comment stress me but its the way he said it as though he was certain I have MS!