The never-ending waiting game

New diagnosis and before diagnosis
1

Hi All,

I wanted to share my frustration with people who would understand.

For 18 months I have been suffering with double vision, which has gone from being an ailment I suffered from when most tired and stressed, to a constant burden to bear. I have had a headache for about a year- which worsens considerably when I’m even mildly active- even yoga leaves me with a worse-than-usual headache that lasts for days.

I’ve been having consultations for a year regarding my left eye- the muscles of which have progressively weakened and now I have a permanent squint. The plan was that I would undergo an operation to correct this, however, a separate consultant requested I have an MRI. The scan showed signs of inflammation, and so the operation has been postponed until I have seen a neurologist. My ophthalmology consultant stated the MRI- along with my other symptoms may be indicative of MS. I was told that as my appointment is “not considered urgent”, there is no telling when I might see this neurologist.

In these last 18 months, I feel my body has turned traitor against me. Everything I enjoyed in life I no longer take any pleasure in. My independence has been stripped from me- I’ve been advised not to drive until my sight is sorted (up until recently I was driving with the one eye- various tests have shown my actual eyesight is still good). My mental health is in a precarious state, and my closest relationships are on the brink of collapse. Access to therapy is scarce here- I’m more likely to win the Euro millions than receive any help in that regard.

But despite all this, I carry on, barely clinging to the semblance of a life.

I know that my story/situation is, alas, typical of many here, and I wonder, other than endlessly waiting between consultations and test results, and harassing the appointment lines, what else I can do to make this ordeal any less depressing?

I know it is a waiting game, that I must be patient, and that there are those who have waiting years before receiving a diagnosis- and I commend those people for their strength and resolve. But I do not possess either of those qualities and I feel quite strongly that another year of this waiting, of not knowing and feeling as if I’m losing my mind, is more than I can endure.

2

Hello

To begin with, you can’t accept your Ophthalmologist saying ‘you may have MS’ as anything more than an opinion. Obviously you are waiting to see a neurologist, and only then, after a neurological examination and any further tests as are deemed necessary, can the neurologist tell you if it’s MS or not. How bloody annoying that the referral wasn’t treated as urgent initially.

You probably already realise this which is why you are so concerned about waiting and waiting for appointments, tests, results, appointments, etc.

You’ve said the whole process for you has lasted 18 months, but you’ve not indicated how long it’s been since the MRI called a halt to the planned eye operation and the wait for a neurology appointment began.

I suspect the current feeling of let down and worry about how much longer this can last is because you’ve been told the referral to a neurologist is not considered ‘urgent’. And in this I agree, it’s been a long journey for you and you could do with getting seen by a neurologist asap to get the neurological ball rolling.

Apart from anything else, supposing you do have MS, the sooner you are diagnosed, the sooner you can gain access to Disease Modifying Drugs (DMDs), assuming you have the relapsing remitting type of MS.

Have you phoned your hospitals appointments team to ask how long a wait you’ll have? Or the neurologists secretary (if you have the doctor’s name)? Why not start by doing this in the first instance. You might find that you will have a quicker appointment than you are fearing. Otherwise, you could see your GP and request that they write and refer you themselves to a neurologist as an urgent case.

I can’t see that waiting for years for a diagnosis is a matter of strength or resolve, it’s more a case of people having no choice but to keep waiting.

I think you could argue very successfully that your case should be treated as urgent. Someone could have considered that a neurological consultation was needed sooner than they did. If you get nowhere with trying yourself to speed up the appointment, try talking to PALS (Patient Advice and Liaison Service). Each hospital will have details of how to contact PALS on their website.

Best of luck.

Sue

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Hi Sue,

Many thanks for your reply.

You’re right in that I can’t accept the ophthalmologist’s opinion as anything other, and if anything I feel it was unprofessional to make the suggestion in the first place, given that neurology is not exactly their area of expertise.

I suppose the frustration is also in part to do with the fact that this has been going on since July 2017, I had been told time and time again that my other symptoms were part and parcel of the double vision, that it was a simple matter of an op- this was in January 2018, then September 2018 I was referred for an MRI after speaking to a different consultant due to the other consultant being away on conference (and I told them exactly the same things I’d been saying for a over a year), then November 2018 I was told I wasn’t going to have an op, due to the results of the MRI, until I’d seen a neuro to clarify/investigate any potential/underlying causes. The waiting times for these consultations have been ludicrous- 4/5 months in some cases, hence my apprehension and dismay.

I’ve spoken with the ophthalmologist’s secretary, who advised me to contact the neuro’s secretary next week so as to give the department time to “get up and running again after the festive period”, but certainly if I have no luck there I will contact my GP.

I didn’t mean to sound patronizing when speaking of people’s strength and resolve when waiting for a diagnosis. Certainly, with how things are in the NHS at the moment patients simply have no choice but to wait. I only meant that, speaking from my own point of view, trying to carry on while waiting shows a certain kind of strength (even when out of necessity) compared to the alternative.

Also, thank you for your advice regarding PALS, if I get nowhere with the neuro’s sec/GP they will be my next port of call.

Many thanks

Pagan

4

Hi Pagan

Just a note, I didn’t think you were being patronising. Apologies for the poor wording.

I agree with you. It’s more than annoying having to wait and wait for appointments, only to finally be told you ne3d a neurologist. Definitely try phoning on Monday to see how long your wait is likely to be. And approach PALS if necessary.

Best of luck.

Sue

5

Just something to add to Sue’s comments. Have you spoken to your GP about the possibility of counselling, I found the whole waiting process very stressful and together with other issues that were going on at the time greatly appreciated the ability just to be able to talk to someone else. I also didn’t think you were patronising when referring to how people manage the whole process, but as Sue says, unfortunately unless you can afford private healthcare for all the tests which would run to thousands of pounds, you have no choice. All you can do is be proactive by checking up on appointments and doing the things already suggested… I hope you don’t have long to wait. I also think that you had a ray of hope with your opp and this has been snatched from under your nose and the waiting has now been extended, which is obviously contributing to how you are feeling.