Forum

New Diagnosis / How to deal with NHS

New diagnosis and before diagnosis
#1

Hi everyone,

My name is Hector, I’m a spanish IT freelance living currently in London.

I had my first MS attack one year ago where I lost the sensibility in the left side of my body (leg and hip) and I had big numbness in my right hand.

I stayed in a hospital for a week, taking steroids and 1 month later all symptoms had almost disappeared.

At that time, doctors did a lumbar punction and everything was ok, and brain + spin MRI, that evidenced an inflammation on the spinal cord.

6 months later I did another full MRI and the injury in the spin had gone but a new one appeared in the brain. Doctors said it was really small so they asked me to take another MRI 6 month later.

Well, even before I could take another MRI, I just started feeling numbness in my feet 3 days ago. The feeling is getting worse and it is making hard to walk. I’m just working from home during these days.

I went to NHS hospital (as an urgency), and they told me they couldn’t do anything, GP’s job. Ok.

I have an apoinment this friday with my GP (I just got registered yesterday), but I went yesterday to a private neurologist that basically said “90% sure you have MS”, and I got a prescription to take steroids for 5 days, as well as a referral to make a new Brain + Spin MRI.

Now, the question guys is, if I do the MRIs my self I’ll end up paying 1000 pounds. However, that’s is not what worries me. What I’m worried about is, how can I manage to start with the treatment and to have NHS paying for that treatment?

I’m thinking about doing this:

  • Take the steroids now, as the attack is getting worse.

  • Do the MRI my self one I’ve finished with the steroids.

  • Go back to the private neurologist with the MRI results and get a prescribed treatment from him (referral for my GP).

  • Take that referral to the GP, and expect him to send me to the proper hospital to start getting the treatment ???

Please, any help would be really appreciated, It’s only 6 months since I’m living here and everything is turning into a nightmare.

Thanks !!

#2

Hi Hector,

My advice is do things throuh the GP, as you’ve already been advised (unless you want to spend a whole lot of money!)

You will not get treatment (if you mean disease modifying drugs, and not just steroids) until you have a confirmed diagnosis anyway. “90%” is not a confirmed diagnosis, so you need to go through the steps to get it confirmed.

You may not need another MRI, since you’ve had another attack anyway (the attack itself may be regarded as sufficient evidence). But you need your GP to start the ball rolling.

It will be slower than going privately, because MS is not regarded as a medical emergency, being chronic, but rarely life-threatening. But nobody pays for disease modifying drugs (DMDs) in this country anyway. Even IF you got diagnosed privately (I did!) you will at some point be handed back to the NHS, for them to decide about long-term management and treatment.

So one step at a time. First you need to go to the GP to get a referral to someone who can confirm the diagnosis. This referral will NOT be about trestment yet, because they need to be 100% certain the diagnosis is correct first. Also not everyone automatically qualifies for treatment. If you’ve had two attacks (or more) in two years, it is likely you would qualify, but not certain, as there is some room for neurologist’s discretion.

Be prepared for it to take a long time - you won’t be starting treatment next week (but that’s normal!)

Hope this helps,

Tina

#3

Hi and welcome. It’s different in different areas, but from my experience the NHS will not necessarily rely on what the private consultant tells them. I was diagnosed privately - private MRI scan, blood tests, etc. and was at that point referred back to the NHS. My NHS consultant then did everything again - repeat MRI, blood tests, ruling out all other possibilities. Unfortunately the NHS can take a while. Privately I was diagnosed within two months of my initial appointment. I then waited three months for an NHS appointment and almost five more to get through the rest of the tests and back to the follow up appointment where they confirmed it was definitely MS (again!) and told me I wasn’t eligible for any drugs at this stage. I believe the criteria for disease modifying drugs is two disabling relapses - that is severe enough to require hospitalisation and/or steroid treatment. I think your plan of action sounds sensible, although if you want to save some money you could just wait for the NHS to do another MRI. You will definitley need to get a referral from you GP to the NHS neurologist to get anything from them. It would also be useful to keep copies of your private notes and MRI discs to give to the NHS neurologist when the time comes as it will speed thing up. Hope this helps

#4

Hola Hector and welcome to the forum :slight_smile: My first question would be can you afford to pay for the MRI? If you can, then I would get it done urgently and before I started the steroids (assuming that the MRI is within a few days). I say before starting the steroids because they make new lesions smaller and harder to spot. If you cannot afford to pay for the MRI or would rather not, then it will need to wait until you have either seen an MS specialist neuro on the NHS (in which case, start the steroids straight away) or your GP agrees to send you for the MRI (I reckon you have a better chance of winning the Euromillions than this though!). Either way, I believe that you need to get your GP to do an urgent referral to an NHS MS specialist neuro. They will get an MRI done, if necessary, and can prescribe disease modifying drugs (DMDs) for you. There are eligibility criteria for DMDs, but as far as I know the fact that you are Spanish doesn’t come into this because you are resident here and because of EU agreements. I do not believe that DMDs can be prescribed privately - only on the NHS. You shouldn’t have to pay for anything. I recommend that you try and provide your GP with the name of the neuro you would like to see if possible. I say this because there is little point in seeing any old neuro - you need an MS specialist, and preferably a good one. You can find a name by using the ‘Near me’ function on this website (although it is a bit out of date apparently), by asking on here or by having a look on your local hospitals’ websites to see which neurologists have a special interest in MS. Looking on websites doesn’t tell you how good a neuro is though so it might be worth asking about them on our Everyday Living forum. If you live anywhere near Charing Cross Hospital, then I can recommend Drs Omar Malik and Richard Nicholas. They are both highly respected MS specialists and can prescribe DMDs (not all neuros can). There may be a delay in getting seen as most neuros have long waiting lists, but it’s the only way to get DMDs in the UK so there’s no way around it that I know of. Having said all that, if the neuro you saw privately is an MS specialist and you are happy to keep seeing him/her, then he/she should be happy to see you in their NHS practice - speak to their private secretary to ask and, if it is fine, then give your GP that name. Got a feeling I might have added to your confusion here?! If anything is unclear, just ask. Karen x

#5

Hi chaps,

Thanks a lot for your answers. Ok I see I should not focus on getting the treatment, at least not for now, as it will take a while.

I should focus on getting recovered from the current atack that is making things really difficult.

I’ll talk tomorrow to my GP and see what can we do.

Thanks Karen for the neuros provided, I live relatively close to charing cross (london bridge) so I will tell them to my GP.

Question then is, should I start taking the steroids ? Cause if they will make the brain or spin injuries dissapear then I will have no way to demostrate I have MS thus no way to get through a treatment, is that right?

#6

Steroids would only rarely make lesions disappear completely, depending on the resolution of the MRI scanner.

A lesion is a bit like a normal wound in that it starts out as inflamed and relatively large, but it reduces in size as the inflammation reduces and the wound heals, finally leaving a smaller scar. It’s easier to spot the inflamed, larger lesion than it is the healed, smaller lesion. Steroids tend to speed up the reduction of inflammation so having an MRI after steroids means that the lesions can be harder to spot. This is not always a good reason to delay taking steroids though for two (related) reasons: steroids work best when taken early in a relapse and it may be a long wait for an NHS scan.

So, if I were you and I was experiencing a nasty relapse, I would take the steroids.

Make sure your GP gives you a thorough check tomorrow so that he/she can tell whoever the referral goes to that you are currently experiencing a new attack. That way, even if the steroids reduce any new lesions, it will be on record that you have had a second attack. Decent neuros know the effect steroids have, so they will take it into consideration anyway.

I suggest you take some time today to write a short summary of what’s happened for your new GP. It will help to make the appointment more productive and mean that they have all the important details for their referral letter.

Please make sure that you take a stomach protector such as omeprazole with the steroids. Steroids can damage the digestive system so you need to take something to prevent this. If you haven’t been prescribed something, please ask your GP.

I hope the GP is helpful.

Kx

#7

Awesome advice, thank you so much.

Yes I’ll definitely writte down the whole story so that my GP knows better.

I have noted also the point about the check out by the GP. Yes, ovbiously he/she will need to include that in the referral, otherwise I’m fucked up.

And yes, the private doctor included a stomach protector in the prescription.

I will start tomorrow with the steroids then, is it better to take them during the morning? Maybe after breakfast?

Thanks again

#8

Hi Hector,

The steroids do not taste very good. Even if you swallow them very fast - they do not taste good.
Make sure that you have some strong peppermints to take the taste away.
We each have our own preference, but just make sure that they are strong.

Geoff