New to the UK (and fairly new to MS) Help?

New diagnosis and before diagnosis
1

Hi all! I’m new to this forum stuff (and the UK!). My husband and I just moved here from the US, and right before we left I had an episode of optic neuritis along with other MS associated symptoms. I was in and out of the hospital for a month, MRI showed two small lesions, but the doctors didn’t think it was sufficient to diagnose MS. Iv’e been feeling great for about two months now (at which point I convinved myself I did not and never would have MS). But of course, lately I have been feeling odd. My whole body feels restless, my eyes are hurting the way they did when I had optic neuritis, and my vision does this weird thing that I can’t explain, but is definately not normal. So now that I have been forced out my denial, I had a question for you guys.

How is NHS with treating/diagnosing MS. In the US you always here that socialize medicine is horrible…blah blah blah. But given that I have not had any expeirence with it (nor have all the people who think they know what they are talking about), I figured I would ask people who are actually dealing with it. Iv’e heard its excellent with a lot of immune disorders, but I havn’t heard from anyone with MS or who is in the “limbo” stage.

I would really appriciate some feedback!

2

Welcome to the UK, and I am sorry you are having such a worrying time with your health. Moving to a new country is quite enough for a person to cope with without that.

It is very hard to know how to answer you, not least because I do not know enough about how things work in the US to know how to compare it to anything else. It would be great if there was someone on here who knew a bit about both systems and could comment.

Many people say, and I think this is right, that the NHS is second to none when there is something seriously amiss. For less serious stuff, there is a great deal of waiting around involved. Because lots of neurological stuff is not life-threatening, it can often fall into the second category.

My personal experience of MS investigation, dx and treatment over 14 years or so has been really good and I have no complaints. (My initial consultation with the neurologist and the first MRI were done privately, but everything since has been on the NHS.) I was dx very quickly and have always had access to the most suitable disease modifying drugs over the years.

As you are probably aware, the General Practitioner is the portal for pretty much everything in the NHS, specialist referrals, scans etc, and getting a good one is very important. It will be the GP who will, if needed, refer you to a hospital consultant neurologist for further investigation if necessary. My GP once said to me, ‘Your neurologist is interested in your MS; I am interested in you.’ That’s what good GPs do: they are experts in general practice in their own right, but they are also your advocate and can be a powerful supporter and guide through the NHS system. I hope you find yourself a nice one (or perhaps you already have?) The GP is your first port of call if you are concerned about how you are feeling.

Good luck with it all.

Alison

3

Just one other thing - if you have private health insurance in the UK through your husband’s job or on your own account, the GP can refer you for a private consultation with (pretty often) the person who is also the NHS consultant neurologist, and this can speed up the process of getting seen and scanned fast (or you could elect to pay for these privately if your circumstances permit it). What typically happens for a person who has been dx with MS while seing the neuro privately is that he or she will be moved across to the neurologist’s NHS list for ongoing care. Private cover here typically does not cover chronic conditions (like MS) beyond the investigation/dx stage, it only covers acute stuff. I am sorry if this all sounds awfully complicated. As I said earlier, a good GP will help guide you through. It goes without saying that I hope that none of this applies in your case and that whatever ails turns out to be minor and that your fears prove unfounded.

A

4

Thanks so much Alison! That’s really helpful information. Sounds like first on my to do list is go get a good GP!

5

Hello and welcome :slight_smile:

I guess the most important similarity between the US and the UK as far as diagnosing MS goes is that both countries use the McDonald criteria. They process they use to get to the conclusion that someone meets the criteria is probably different, but both involve neurologists, MRI scans, blood tests to exclude other conditions and other tests as necessary (e.g. lumbar puncture / spinal tap, evoked potentials). As Alison already said, the first step in the UK is a GP referral to neurology. If you can afford a private consultation (~£150-200) or have private insurance, then private is definitely quicker, but the most important thing is to see a good neuro, ideally an MS specialist. Most GPs won’t know MS specialists by name, so I recommend doing some research and supplying your GP with the name of the neuro you want to see. The simplest way to do this is to use the “Near me” function on here to look for an MS specialist in your area, however this is not always up to date, so do check that the neuro is still actually working at that hospital. If no one comes up in the search on here, then look on local hospital websites for neuros listing MS as an area of interest.

As Alison has already said, even if you have your first consultation privately, the whole diagnostic process can be painfully slow so you need to be prepared for a bit of a long haul :frowning:

I would recommend taking copies of your MRI scan and any other test results as well as letters from your previous neuro with you to your appointment (or get the GP to include them in the referral). The neuro may still want to redo everything (they can sometimes be more comfortable with test results done in their own hospital), but it might help to speed things up for you.

As far as treating MS goes, the UK is woefully behind the US in many ways, the main one being access to disease modifying drugs (DMDs) as the criteria here are much more stringent than they are in the US and it’s all funded by the NHS rather than medical insurance. This does keep DMD costs much lower than in the US, but it means that too few people get onto a DMD when they (arguably) should :frowning: As far as treating symptoms, I would imagine that there is little between the US and the UK, except that it is probably much cheaper here. On the whole, MS is reasonably well supported in the UK - IF you have a good neuro or MS nurse or GP, know what you need and/or are prepared to push hard to get the right help if necessary. Unfortunately this does vary quite considerably by area :frowning:

Don’t be afraid to shop about for a good GP - it can make the world of difference!

Karen x

6

Hi Mongam, I used to live in the States… but before I had MS so it’s hard to compare.

Of course if you have health insurance in States you are likely to get good treatment… or at least quicker than here. God only knows what American MSers do without health insurance.

I can give you a little anecdote that, for me, compares the two systems:

I was insured with Kaiser Permanente through my work. I’d been getting bad pains in my right side after eating… sometimes so bad it would keep me up all night. I looked up symptom & found that it would indicate gall stones.

I went to see a doctor at Kaiser and told her symptoms and said what I thought it was. She laughed at me and said something like ‘So you’ve self diagnosed’? in a rather cutting way.

She sent me for a blood test & when I went for results she told me there was nothing in blood test to indicate a problem with my gall bladder. She said it was probably gas and I should watch my diet.

I kept getting the pain though.

About a year or so later I returned to UK and the pain was getting much much worse. I went to a GP and described the pain. The GP said it sounded like gall stones. I said Oh no it couldn’t be because I’d had a blood test in USA and there was nothing wrong with gall bladder.

She was astounded. Told me they couldn’t possibly tell that from a blood test & she referred me for a scan.

Cutting to the chase (sorry this is long!), the scan showed gall stones. I had my gall bladder removed. I was told that it had been ‘critically deseased’… but thankfully not cancer. The surgeon told me this and asked me why I had left it so long before getting medical help!

So, maybe I’m just a wee bit biased, but personally I would trust the NHS, with it’s faults, over any American private healthcare.

Anyway, one little story that doesn’t tell you anything about MS treatment in the UK!!!

Welcome… and as Karen says, get a good GP.

Pat x

7

Thanks Karen and thanks Pat. So happy I found this forum! And Pat, I can’t stand it when doctors do that…Iv’e definately had that happen to me as well!

mongam