Paying to go private - what will it actually achieve?

New diagnosis and before diagnosis
1

Hi everyone

I have finally managed to collect a referral letter from my doctor for a private (paid) appointment with a specialist MS neurologist, he is diffferent to my current NHS neuro. I have been in (and out) of limboland for the past 12months now and I am starting to think what really is the point with it all?

It seems as though I have putting all my efforts into getting a second opinion or actually getting some answers from a neuro, that now that I actually have an appointment scheduled, I don’t actually now know why I am bothering to attend. I think that now I have become scared with the thought that I might actually get fully diagnosed and started on some kind of treatment.

Currently, I have been given a CIS diagnosis and given a wait and see approach towards the full diagnosis of MS. I have had one MRI scan, this reported back brain lesions and a spinal lesion. A lumbar puncture which came back “normal” but with O bands and a clinical history of MS related episodes going back 5 years now. My current neuro is the dismissive type and I think that whatever I report back refernece possible relpases, he is going to dismiss as not being anything significant. Which he has done everytime I have seen him. I was introduced to a MS nurse back last year, but when I have phoned her, she simply tells me to go and see my GP. I get the impression that unless I am disabled then not to bother her.

I think what is bothering me the most, is the thought of getting diagnosed and starting on a DMD which is going to have some possible side effect. Currently, apart from taking a vitamin D capsule each morning I take no medicine whasoever, apart from the odd paracetamol or ibuprofen tablet for general aches and pains.

Is/has anybody else been really close to getting a full diagnosis of MS and have felt like this? Am I in denial and simply trying to put off the inevitable and moving into an era with my health, where once diagnosed my life is going to be different and is the MS diagnosis going to make my life (work mainly) worst than it is now? (I dont know how it would, but it may/ may not)

To sum things up, and I can’t believe I am saying this but I feel that i’m scared of moving out of limboland and into the world of having a proper diagnosis. What are the positivies to having a full diagnosis?

(Apologies for writing such rubbish on a public forum and not making much sense, but as sad as it sounds, I don’t have any real persons that I can speak too about things, so this is my only way of making head or tail of this situation)

Can anybody give me some positives with regard to getting a proper diagnosis and what the benefits are?, I am pretty sure that I do have MS and my current neuro knows it as well, however, I feel like I have been left on the doormat with no help and rapidly loosing the will to carry on with everything. As for my current neuro and health care trust, everything seems to be down to money and they don’t want to know anything which is going to cost them something.

Thanks for listening

2

Hi Number 08

You are probably right in that your current Neuro and MS Nurse have some sort of agenda - apart from treating you. However, it may not be cost, or just cost alone. Start in a different place:

A formal Dx of MS means that you have to inform the DVLA (if you drive) and your Insurance Co.
It also means that you may be able to invoke a “critical illness” clause in your life insurance, you may now get some protection against dismissal from work if the MS gets worse, and you may qualify for a DMD which may keep some relapses at bay.
So, yes, there are some positives.

It may be that your present NHS team do not like giving bad news - some people are like that. The nurse will probably follow the Neuro’s lead on this. They may be thinking just of the “tell the DVLA” bit - with your interest in mind - and certainly at least one “alternative practitioner” uses this as a way to get more clients: “How to avoid a Dx of MS” sort of thing.

Don’t worry ahead of time about DMD side effects - you may not get any, you may only get them from Copaxone or frtom one of the Interferons, and they can actually improve your life for some long time. yes, they will cost the relevant NHS Trust, but from what you have written you are about ready to qualify, and should have the Dx already. All you will have to do is make a small change to your daily routine.

Don’t worry either about having a moan here. What you will find is that there is always someone who will “listen” and understand. The “Everyday Living” forum has several regulars who have expertise in (say) employment law, in benefits regulations, in various bits of health related stuff, and so on - so you are among friends. Go to your private Neuro (I did) and it could be the best thing you have done.

Geoff

3

I agree with Geoff.

One other thing: you already know that you might have, or be on the way to developing, MS. That knowledge is already out of the toothpaste tube, and there’s no squeezing it back in. It seems clear from your post that concerns about what is the matter are already clouding your days and troubling your nights. If that is indeed the case, then I think you might as well get on with it now, and take the next step that you have planned. It isn’t as if making it all go away is an option, alas.

Good luck.

Alison

4

Hi All

Arrrrrrrrrrrrghhhhhhhhhhhhhhh

Just a quick update/ rant, I had my private referral four weeks ago and the new neuro went through everything and suggested MS but a mild form which wasn’t particulary active at the moment. He has requested me to have a MRI with contrast as the last one was over 12 months ago. This appointment was four weeks ago and I have heard nothing reference a date for the MRI since.

I phoned the private hospital today and they said that waiting four weeks was ridiculous and I should have heard by now, they are covering holidays etc at the moment so put the lack of communication down to that.

I eventually managed to get a date - in two weeks time!!! but now I have to have a renal blood test done before I can go ahead and have the contrast dye injected!!! As the hospital is outside of my normal town, I have to arrange for my local GP to do the tests, then I have to fax the results back to the private clinic. As long as everything is OK, then I can have the MRI.

I cannot believe the time it has taken to get this point now. I mean, I am actually paying for these investigations (via works healthcare policy). You can say what you want about the NHS but believe me private hospitals in my experience are not very good.

End of rant!!!

5
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Hi Monkeygirl

I think the problem is that I am pretty naive when it comes to healthcare to be honest. I haven’t really got a clue, I turn up and wait my turn like evrybody else. I have never been privellaged enough to be seen privatley before so have not really got a lcue about the process of who to contact, etc, etc.

The neuro does his private work in a private hospital. I was told by his secretary that as the hospital is over an hours travel for me, then I should contact my local doctors surgery and get them to do the blood test and get them to fax over the results to the private hospital before my MRI appointment. This is actually proving pretty difficult to do as my local doctors receptionist is a stubborn old boot and anything different to the norm is a no no. Why they won’t do the bloods on the day I don’t know.

I’m hopeing to get in next week to get the bloods done and then i’ll have to wait for the results to come back. I am keeping everything crossed though that I make the appointment date in September.

I had the invoice drop through the door today from the private appointment I had with the neuro. I don’t think i’m going to rush to pay the invoice though. For anybody interested, the cost of this consultation was £250, the appointment lasted approx an hour. I did recieve a written report from him though detailing his findings, which he sent to my doctor.

7

Hi number08

yes, it can be really confusing dealing with the private process, if you’ve not experienced it before. I have been lucky enough to have private health cover through work for years, and I’ve used it once before, so I kind of knew the ropes. It is very different from NHS - which does encourage you to sit and wait and do as you’re told. I love the NHS, but is so overwhelmed with patients that it is like a giant sausage machine.

It sounds to me like the secretary was trying to be helpful - trying to save you a long journey. I’m sure she didn’t realise it was going to be so complicated for you! My local GP’s is the same - a week to get bloods taken - the mind boggles! The results hopefully won’t take too long.

Fingers crossed for you -

MonkeyGirl

8

Hi number08,

I’m considering going private. Now only enquirying about what sort of MRI machine would do the test, what images would they give me, slice thickness etc. Like you, I’m finding private does not necessarily mean good! They act like they do me a favour! It’s a joke, difficult to get precise info and in some places even manner is problem!