Hi everyone,
I just wondered if people could say if they think DMDs will be recommended for me? (I know that the specialist will decide for sure, but I’m hoping other peoples experiences might give me an idea of what to expect!) I was diagnosed with MS last week and in brief, I had 2 weeks of vertigo and numbness diagnosed as CIS, a brain MRI showing swelling, a spine MRI showing lots of inflammation all down my spinal cord which showed up as bright white on the scan (although I’m not sure if this is the same as lesions?) and then that prompted the confirmed diagnosis.
I’ve been refered to a specialist (and I’m hoping I’ll be refered to an MS nurse too, as they sound invaluable from reading other posts here!) so I’m just waiting for those appointments and I’ve been trying to do as much reading as possible to prepare for the them and make sure I get the most out of them. What I’m wondering is: for people in a similar situation (i.e. confirmed diagnosis following a brain scan with swelling and a spinal scan with inflammation), were DMDs recommended straight away? Or is it a case of “see how you get on” to start with? Or might they just prescribe drugs to help with the current symptoms (at the moment tingling, numbness, a feeling of being a little off balance all the time, a slight fuzziness with my vision and tiredness)?
Thanks so much for any experiences anyone can share!
Laura
There are NICE eligibility criteria for DMDs, the key one of which is that the patient must have had at least two “clinically significant” attacks within two years. On the whole, clinically significant means disabling, debilitating, serious, but some PCTs have added extra wording including, e.g., not sensory. So, whether or not someone is offered DMDs depends on three things: who they see (only certain neuros can prescribe DMDs and some are happier than others to do so), whether or not they satisfy the two attacks in two years rule and how the neuro and PCT define “clinically significant”.
Meds for symptoms are much easier, although some symptoms don’t have easy fixes. Tingling is one of the relatively easy ones, along with neuropathic pain (e.g. burning or shooting pains) - these are helped by neuropathic painkillers, e.g. amitriptyline, gabapentin, pregabalin. Poor balance can be helped by neurophysio (ask for a referral) - exercises can retrain your brain to which way is up, and strengthen the muscles that help us to counter being off balance. The best way to see if there is something that can be done for vision is to see an ophthalmologist (your GP can refer you). Fatigue is the one that most MSers would just about kill for a cure for. There are two meds that are fairly widely used: amantadine and modafinil. Unfortunately, neither work for everyone (the odds are probably 50/50) and it is very hard to get modafinil if you don’t already get it.
Make sure you have a list of things you need help with to go through with the neuro. And make sure and ask for the MS nurse’s contact details: they are the first port of call for help (apart from this forum!).
Karen x
Hi Karen,
Thanks so much for your reply. I had been reading up on DMDs and was getting confused, since a lot of info seemed to suggest that starting them straight away was important and then other info said what you have explained - that there are certain criteria to meet first. I guess I’ve only had one clinically significant attack so far, the two weeks of vertigo, but the numbness and tingling has stuck around since then. Althogugh I’m not sure if the inflammation on my spinal MRI is a flare-up of some kind, or if that sort of inflammation is there all the time with MS - I just didn’t think to ask in my diagnosis meeting! I’ll add the question to the list for the neuro… 
Thanks again - I have a feeling this forum is going to be invaluable!
Laura
I’m a bit confused by the spinal inflammation you mention. Do you have the report, so you could copy what it said on here? It is not normal, in MS, for there to be extensive inflammation in the spine without pretty extensive matching symptoms. The DMDs thing is all about cost. They do tend to work best when started early though 
Kx
Hi Karen,
I have nothing in writing I’m afraid - the neuro showed me the scan on his computer screen, which had been done with a contrast dye, and he pointed to how my spinal cord showed up as bright white on the scan - he said that this was what confirmed the MS diagnosis. Does any of that make any more sense? I’ve never seen an MRI of the spine before, so I didn’t really know what I was looking at - I just took his word for it! I’ll definitely ask for more confirmation when I see the MS specialist…
Laura
Hi Laura - Karen is right - it is all about cost. This includes where you live. I believe in some countries not sure which ones as soon as MS is diagnosed DMDs are started immediately. However don’t despair I do believe overall the NHS is good. Make sure you keep an eye on your symptoms. If you feel you’ve had another “attack” get straight on the phone to get an urgent appointment with your neuro. Some hospitals will have special relapse clinics or just nicely nag your neuros secretary for an appointment. Perhaps it might be a good idea to talk to a MS nurse if you haven’t already. You generally don’t need a medical referral. Just phone your local hospital and ask to be put through to the MS nurses. Look after yourself and don’t forget to treat yourself - chocolate and ice cream works for me!!! Hugs Min xx
Ahhh, doesn’t it always come down to money?! It’ll be really interesting to see what the specialist recomments - I’m ever so impatient to have that appointment now… I haven’t talked to an MS nurse yet, the neuro said I’d be refered to one of those at the same time I am refered to the specialist - more impatience from me there too! I didn’t know you could call up to speak to a nurse without a medical referral, I might call if I haven’t heard anything in the next week or two.
Failing that, chocolate and ice cream sounds pretty good to me
Hi Karen,
I’ve been reading your ridiculously useful sticky about brain/MRIs, and I’m wondering if that’s what the inflammation is - to quote the bit I’m thinking about:
Sometimes, neuros ask for a scan with contrast. This is a T1 scan taken after the patient has been injected with a “contrast agent”. This is usually gadolinium which looks bright white on a T1 scan. The central nervous system, i.e. the brain and spinal cord, is protected by the blood brain barrier (bbb) which stops things that might harm it from getting in; gadolinium normally can’t get through the bbb.
In MS, cells from the immune system get through the bbb and attack the myelin coating of nerves in that area, causing inflammation and damage: a lesion. While this is happening, the lesion is called “active”, “enhancing” or “contrast enhancing”. The gap the immune system has caused in the bbb allows gadolinium to get in. If there are no breaches in the bbb, there should be no bright white signs of gadolinium inside the brain or spinal cord. If there are, these show where there are breaches, in other words, where the immune system is actively causing new damage.
The neuro said the whole of my spinal cord was bright white after the contrast dye, so I’m guessing that’s the case of gaps letting the dye getting in…? I’ve had stiffness and pain in my back for about10 years (sometimes so bad that it’s made me sick) but I’ve put it down to poor posture/working at a computer all day/being overweight/not getting as much exercise as I know I should. I’m not sure if there’s any chance it could be related to the MS (another thing for the question list!) and it hasn’t ever been debilitating, just a nusiance really…
The whole cord enhancing is not something that would normally be associated with MS - there would normally be brighter spots / patches only. This is a good site that shows what’s normally found in MS and some of the other conditions that affect the spinal cord: The Radiology Assistant : Myelopathy
Kx
Aaaah, I see - so the mystery continues! Hopefully the specialist will be able to give more info - I may well be articulating what the neuro said incorrectly too, as he definitely said that the spine MRI was what confirmed the diagnosis and then he pointed at the white bit, but I just don’t know why that was important… just goes to show that having someone else with you is a good idea when possible…