Routine drs trip went south very quickly

So I went to the drs last night due to having pins and needles in my arms, hands and left leg for about 4 weeks, while I was there he did lots of movement tests, balance tests, asked me lots of questions etc. I mentioned about my eyes going blurry sunday and I couldn’t see for about 2 or 3 minutes then it came back, no pain or anything. He went to discuss with a senior doctor and came back saying they think MS and I need an urgent MRI.

Of course my head fell off, ive come home and re searched and realised I have quite a few symptoms actually including tinnitus and temperature issues.

My Dr said up to 6 months for an urgent MRI, my question is should I go private? Does anyone have any experience with this for the initial contrast MRI? I suffer with anxiety and take medication for it so the idea of waiting 6 months really seems unfathomable to me, any experiences or suggestions welcome, thanks :blush:

Hello there, I’m so sorry this has dropped on you from nowhere. The thing that I learned about MS is that it can affect any nerve in the body that does anything, so almost anybody could read through a list of all of the potential symptoms and find something. It does mean that one becomes hyper vigilant though to the point where it can cause anxiety. If you’re anything like me you’ll spend the next few weeks questioning every single thing that’s happened since you were a teenager, and they just spin round and round and round in your head. Start a list on your phone or something where you could put it all down, then at least you don’t have to worry about the potential of forgetting it, and it will be useful when you speak to a neurologist.

If it’s not going to break the bank then I would personally get a private appointment with a neurologist. Don’t just pick a random neurologist though, find one in your health board that has a specialism in ms. A good way of finding one is to use Facebook to find your local support group that the MS Society organises, and ask the members who they recommend. If you can’t find them on Facebook then give the MS Society helpline a call to see if they can pass on your details to somebody in your area. This has the added benefit of them being in place in your NHS hospital and so they can transfer you over if it’s needed and it will be a lot smoother.

It can get really overwhelming I think, don’t forget that the MS Society helpline is a really good place to talk to somebody who really does understand what it’s like. And these forums are great as well because nobody here is going to judge you for having a meltdown or getting stuff off your chest. Sometimes it could be difficult talking to family or friends because they feel they need to do something or help you in someway when all you want to do really is just ramble for a bit.

Fingers crossed all goes well, be kind to yourself :blush:

3 Likes

Crumbs, that’s all a nasty shock for you. No wonder you’r reeling. Your description brings back my own memories of the exact moment it dawned on me what might be the matter here. I felt that a trap door had opened under my life and all the comfortable certainties were in tatters. In my case it did indeed turn out to be MS, but it’s never certain until it’s certain, as I am sure the GP will have explained to you. At least if your GP’s hunch turns out to be right, it won’t come as a surprise to you.

I am sorry that you are faced with such a wait. That’s really bad. I wish I knew what to suggest. I had private cover at work, and had the first consultation and MRI under that before being transferred to the same consultant’s NHS list for further investigation and finally diagnosis and treatments. That saved a lot of time in my day, but that was 25 years ago and I do not know whether it still works that way now. Younger members on here can advise you, perhaps.

I am very sorry that you are having a horrible time.

1 Like

Hi,
It sounds like a very nasty shock and I can understand you’d not want to wait 6 months.

In my case I also experienced a lot of delays and eventually went private, although that was to see a neurologist rather than for the MRI itself.

I did at one point consider getting an MRI privately. You can compare prices online and it may not matter much which machine you end up in. I found it helpful to share my idea with my GP. You will probably need a referral from a neurologist or GP - just a simple letter confirming what they want, i.e. brain or brain&spinal cord, and contrast or no contrast.

The MRI then needs to be reported on by a neuroradiologist. Check if any MRI you find privately includes this report, rather than just the pictures. The radiologist’s report goes to the neurologist. This is one reason why the NHS is so slow: You get your scan done but then you have to wait for a neuroradiologist to report on it to your neuro.

As for seeing a neurologist privately, I did this. From my experience, I agree with those who’ve recommended you to do your research. Firstly, you need a neurologist who specialises in MS. The first man I saw was an MS specialist but was totally unhelpful, waste of money and only increased my anxiety! After that I researched properly and found someone who was (a) involved in MS research (so committed, up to date) and (b) had some nice reviews/comments online. When I saw this second neuro, I felt I was finally in professional hands and it was such a relief.

I’d guess the costs might be about £250-300 for a neuro appointment. Be aware you may need more than one, though… they tend not to diagnose you on the first visit, even if they do have your MRI.

One last tip, if you do end up staying with the NHS. I found out where my local MRIs were being done (in a car park!), phoned the place and said I was willing to take last minute cancellations. It saved me a few days in the end.

On the plus side: Your doctors are referring you for “possible” MS, which is the responsible thing to do, just in case. That’s because, if it is MS, there may be treatment that could help you, so it’s worth checking. And there will always be support for you here.

2 Likes

Hiya, thanks so much for your reply.
Yeah I’ve been thinking about everything and trying not to panic but I’m just in shock that thats what they think it is and are looking into first instead of something like a trapped nerve which is what I was expecting.

Im not really in the position to pay for everything private to be honest but i was considering paying for the MRI privately so I could get an answer a bit quicker as to what the chances are it is MS or not, people I know are telling me I’m beinh crazy and to wait because its a lot of money to spend if it isn’t…but what if it is and I can get help much sooner…it’s just a lot to get my head round and I came on here and learnt a lot so thought it would be a good place to ask and offload I suppose.
Thank you for such a kind and detailed reply, I will call up today and see what they say :smiling_face:

Hi Alison, yes thats exactly what I’m doing and today ive had the usual pins and needles in left side but also head aches and hot flashes and I just keep thinking is this MS or because I’m now stressed to the max. Ive looked into a few private places but they charge per area and my GP has advised today that they have requested spinal cord and brain so now I’m not even sure if I can afford one at all with places charging seperate amounts per area of the spine.
It’s all just a lot to happen in a short space of time. However I did have my eyes checked today and the optician said they can’t see any issues with my optic nerve etc so thats a good sign maybe? Thank you for replying and sharing your experience I really appreciate it.

Hi Leonora, thank you for the reply. I spoke to my GP today and he said he would happily write me a referral letter if I wanted to do that but now Ive seen they charge per area of the spine I actually dont think I can afford to go down the private route. They also said they wanted a contrast MRI, not sure if they would hike the price up too. Im going to phone round a few places Monday and see what they say but I think its probably going to be a case of waiting. As unbearable as that feels right now. But I will take all your advice on board and make sure to do research so thank you for that.

I am trying to focus on the fact it might not be, but my anxiety brain is screaming but it might just be also and its so hard to drown out, I feel like I’ve just been walking around in a daze the past 2 days. But reading allnof the posts and comments on here has helped me feel less alone in the prospect of what might be so thats a plus too.

Hello @emmalouise1
I’m not entirely sure a GP can diagnose multiple sclerosis straight off. They would usually have to refer you to a neurologist for further investigation.

I was referred by my opthalmic optician when I lost complete vision in one eye, due to optic neuritis. It took the best part of a year to be dx by the neurologist and even then the diagnosis stated “probable multiple sclerosis”.

It was 25 years ago and information about MS was not as widely available as it is nowadays, so I understand the worry it must be giving you. I think it’s best to keep an open mind and until the disease has been confirmed by the neurologist, just take everything with a pinch of salt. :salt:
All the best,
JP

1 Like

Charge per area of spine… Perhaps check with the doctor what you actually need. For example, I’ve never had my lumbar cord scanned - they seem to do the top bit (cervical, basically your neck) and the bit below that (thorax). I’m also interested they want contrast - none of the hospitals I’ve been to have wanted that, but I understand it can be helpful in working out how recent any lesions are.

For what it’s worth, I also travel abroad quite a lot and I’ve found I can get an MRI for about half the price elsewhere in Europe, within days, but without the radiologist report.

I really sympathise with the waiting. It’s like a kind of torture and your whole life can feel it is turning on this “Is it/isn’t it” question. The MS Trust has a video on “limbo land”, with a neurologist talking about this stage. There are things you can do. Get regular exercise, for example (I’ve found aerobic exercise helps with anxiety). Do things that force you to concentrate on something else.

And if it’s any comfort, your entire life is not going to get overturned if you have MS, from one day to the next. Once I got over the shock (and onto treatment), my life has continued just as it did - although with more worry about the longer term. Some are less lucky, but there really is quite a lot of treatment out there… the aim is that MS should become an illness we “manage”, like many people live with type 1 diabetes. There is a huge research effort going on worldwide.

2 Likes

Hi JP, thanks for reading and replying.
Yeah he didnt say he was certain, he and a senior colleague discussed it and agreed with my history that it needed looking at and sent an urgent referral to neurology for the MRI. But on the notes on the NHS app it said MS which sent a shiver up my spine if I’m honest. And to make matters worse I’d took my teenage son to the appointment with me so he is now very worried too. My own fault for taking him I suppose but I really wasnt expecting anything like that to be the possible outcome.
Yes I will try my best to try and stay positive, I seem to be less worried when busy so I may start some decorating or something to keep me busy for a bit.

Yeah I could ask that actually, he just said spinal cord and brain when I called back today with my list of questions I was too shocked to ask at the time. Yeah contrast made me worry a bit more to be honest…like does he think I’ve had it for a while looking at my history and hes checking for new ones also? All just very scary.
If I had the funds to go abroad I would do so, but unfortunately I’m just not in that position. Thank you, its been really good to come on here and see first hand experiences like yours where things have been managed well and life isn’t too different, its the what ifs that are the hardest as with everything, I will have a look at the video thank you :blush:

I think sometimes too much information can just cause anxiety, especially if it’s not entirely correct.

Like one of my hospital discharge summaries last year stated admitted for fever, pneumonia and cancer; I do have a blood disorder but I know for sure it’s not cancerous and not all cancers will kill you.

Yes always think positive, it’s never good thinking negatively.
Best,
JP

Oh wow thats awful! If you hadn’t already known that information that could of really caused panic and pain!

Yes I am going to try my best, my refferal is showing on the NHS app now so thats made me feel a little better too knowing the ball is rolling, even if it is a slow pace.

Hello EL, I’m dropping in late on your post but hope it helps a bit.

I was diagnosed after eye problems but they were somewhat more dramatic than going blurry for a while - over a period of days I lost pretty much all my vision in my right eye ( I went to the eye outpatients unit at nearby hospital and when the nurse asked my to use my right eye to read as many letters as possible on the board my reply was ‘what board?’. It was said partly but only partly as a joke and I couldn’t read a single letter). Optic Neuritis is a fairly common first real symptom of MS but it results in a lot more than blurry eye for a short period.

On the subject of your eyes/vision, have you had them checked by an optician? Amongs other things they will examine the back of your eyes including where the optic nerve enters the eye. The following might increase your anxiety initially but give you some longer term reassurance: with optic neuritis the optic nerve gets inflamed and where the nerve enters the eye this can be seen quite easily through an examination by an optician.

Might be worth getting your eyes checked any way to see what, if anything caused the blurriness.

More generally, I remember my anxiety and frustration at the amount of time it took to get a diagnosis- near 19 years ago. At the time I was imagining a dire future for myself. I’m pleased to say that, in practice I was quite able to carry on working and living a perfectly normal life for ‘quite a few’ years until one day I found my right leg was struggling to walk more than about an hour.

Where I am now, at 71 early this summer, is that walking at a steady pace is now down to 10 minutes or so but e.g I can potter around the garden for at least an hour and often much longer. I sometimes need to watch my bladder an make sure there is a toilet not too far away but otherwise life is pretty normal.

Anyway, I suppose I’m saying that although MS varies from person to person it’s not an automatic and quick route to life in a wheelchair etc. I know that the wait for a diagnosis is awful and it’s hard not to imagine the very worst but etc, etc

Take care

1 Like

Hi Hank, thank you for reading and replying. Yes I went to the optician Friday and although my sight has changed in a mere 9 months and I need new glasses, they said my optic nerve looked fine and they see no cause for concern which did make me feel a lot better. He also said the loss of vision was a visual migraine, again nothing to worry about and that I should start a diary if they happen more frequently, but so far just the one.
Thank you for sharing your journey, its really good to hear that its not always as scary as it sounds. I think thats amazing for the age of 71! I’m hoping they’re just being cautious and doing a thorough check, and whatever the outcome I suppose is good news because the earlier they detect MS the earlier they can treat it.
Again, thank you for replying, take care :smiling_face:

1 Like

It’s funny, in my mind I’m still in my late 40s :sunglasses:. A few weeks ago someone asked me if I wanted their seat on the train which was nice of them but also a shock ‘ what me , I’m a fit young midlife guy?’.

Good to hear about your eye and neurologist.

All the best

2 Likes

I just thought I’d give an update, I got my MRI scan letter through today for Feb 3rd, eternally grateful that I didnt get into debt for a private one. So if anyone finds themselves in a similar situation wait it out, hopefully it will be arranged as quickly as mine has been 🫶🏻

7 Likes

That’s good news. Thank you for the update.

1 Like