hospital appointments

Everyday living
1

I had an appointment for thr neuroon the 27th of this month. Last Friday I got a letter telling me that due to unforseen circumstances it was necessaty to cancel the appointment and a new one sent to me in due course. Seeing as it had been over 2 years since I’d seen a neuro before I’d got an appointment 8 months agomy expectations of getting a new appointment are small to non existant,

Then today I recieved a phone call caceling an appointment with the MS nurse as she was ill, fair enough I have no problem with that, but in the course of the conversation the MS nurse (not the same one) told me that the neuro appointment had been canceled by the nurse I was speaking to because i’d been seeing my nurse every week, an absolute lie, I had been seeing her every 4 weeks for a few months because of emotional problems (my son died in a motorbike accident) which she gave me great nd sympathetic support.

I explained that my symptons had got worse over the last 4 or 5 weeks to which she said was impossible in such a short time even though I’m the one who has extra walking problems with a frame and has fallen and needed help from the ambulance to be lifted up as I can’t do it myself.

I’ve always, and still do have great respect for the NHS, but after this latest debacle neurology has no standing with me at all, I know my MS nurse is good but that’s it. All I want to do now is give up with the hospital and go and join my son in perfect peace.

Sorry for carrying on so long but I just had to put my thoughts into words. Thank you for your patience in yeading this

2

P.S. At 57 i feel like I’ve been totally written off

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Hi Monkey,

Some bits of this don’t quite add up. Not your account of it, but what you’re being told, I mean. If your appointment was cancelled as “unnecessary”, then why on earth would they reschedule? Surely you either need an appointment, or you don’t? It makes no sense that you need one, but not yet.

Seems like a bit of a failure of communication (I don’t mean on your part). Also seems like your issue is probably with one individual, and not with the whole of Neurology.

I don’t understand why that individual would have said deterioration within four to five weeks was “impossible”. I’m assuming you must have a progressive form of MS, and that is why you do not have neuro appointments very often, by default? It might also be their basis for assuming you would not have the sudden, dramatic changes that are a feature of RRMS. However, some people with progressive MS do still have relapses superimposed on it, so even if you are progressive, it should not have been dismissed out-of-hand that you might have had sudden deterioration. Thought should also have been given to the possibility you might have an infection that sparked it off.

I would not give up on Neurology over one person. Hopefully, your usual nurse will be back soon. The neuro is probably not to blame, as I doubt he even knows what happened - I expect his appointment diary is managed for him, and if an appointment is released as “no longer needed”, he won’t have visibility of the detailed reasons for that.

Tina

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hi Tina. sorry i forgot to say I have a rrms dx, although when i saw the neuro the second time/ way over 2 years aqo he just said there was nothing he could do for me goodbye, a whole 3 minutes of his time, and the report he sent to my work place cost me my job, i get no treatment apart from pregabalin and modafinal prescribed by a different neuro 8 months ago, and baclophen which doesn’t seem to work even on maximum dosage, and clonazepam last thing at night which my nurse got me put on over 18 months ago.

I feel that because i wasn’t told the reason why the neuro appoitment was canceled in the letter, and the fact that i see no neurologist unless i make a fuss (which my nurse has no say in) just proves that i’m considered a waste of their time to them. I haven’t given up on neurology but i feel they’ve given up on me. It seems I’m not right for any other treatments So I feel it’s time to give up on them, after all it seems that I’m a pain trying to get help,

Kevin

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Hi Kevin, oh love! I know just what you mean when you feel neurology hasn`t looked after you as they should.

Because after 14 yrs of tests and changes of dx, and a referral to a top MS doc being turned down, I too felt like that. But I have been seen regularly and been told I will never be discharged.

We do need them if only for our benefits…especially as IB and DLA are being changed and lots of us are being denied what we are due.

Every appointment I get gets changed…neuros and MS nurse have left our hospital, leaving them with an even bigger headache over appointments.

I recently saw another neuro, who listened to me, explained why I haven`t got a conclusive dx, which I finally accept.

Now about the tragic loss of your dear son. This is something which I can only imagine, must be the worst feeling in the world. Parents arent supposed to lose children…yes, it does happen, but I am sure it would do me in too.

Bereavement takes a toill on us, both physically and mentally and we need time to go through the process. Have you had any counselling at all?

I feel for you.

much lov

Pollx

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Thankyou Polix. No i’ve not had councelling as up until lately I’d been managing reasonably well i could talk about Scott with fewer tears, and fewer feelings of all overpowering grief. But the appointment cancellation and being told a lie as to why and Scotts 35th birthday and being made to feel of no use with a life of even less use and unworthy of any treatment apart from the very basics has put me in a downward passage from which i can see noway out, as week by week i see my independence disappearing with not even one attempt of help, what’s the point of trying? I know what the future holds as i have a brother who is all but quadraplegic through spms where Iknow i’ll go one day whatever, but no attempt to even slow it down? Not for me

Sorry if I sound self pitying, but I’d rather do something while i still can, than be reliant on the kindness and assisstance of friends and carers with no self determination left to me.

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Hi again Kevin,

I’ve got to say it is certainly not true that your destiny is automatically the same as your brother’s. By no means everyone with MS ends up “all but quadriplegic”. I can understand how frightening it must be to see someone in the same family, and think: “That’s me in a few years”, but in fact, studies have shown that where MS hits more than one member of the same family, the only correlation is approximate age of onset. That means it’s likely you and your brother both started with symptoms around the same time of life, but does NOT mean his fate is yours. The fact is, nobody can say how it will go - even in members of the same family. I know a father and daughter, both with MS. The daughter, in her 40s, is already in much the same state as you describe your brother. But her father, well into his 60s, is still pretty mobile, albeit with the help of a stick (not unusual, at that age). So closeness of the relationship does not predict how similar the course will be.

Obviously, you can’t stop thinking of your brother - nor should you. But I think you need to start challenging your belief that the future is already written, and there’s only one way it can go. Nobody knows that, not even the best neuro in the world. You are not your brother.

Presumably, you were not offered treatment, because you did not qualify? So I’m guessing relapses were infrequent (less than two in any two year period) and/or not serious (e.g. sensory only, good recovery)?

If you think you should have qualified, then you should be asking for a clear statement of the grounds for the decision, and contesting them if appropriate.

But lots of people with MS aren’t on treatment. It’s not the answer for everyone. If you are not relapsing very often anyway, the benefits to you might be debateable. That’s not quite the same as holding you “unworthy” to receive it.

I think you need to have a word with the regular nurse when she (if it’s a she) gets back. Or perhaps the GP? If you want to see a neuro more regularly, there should be no reason, in theory, why you shouldn’t have at least an annual appointment. Though I have to admit to finding mine a nusisance and a waste of time, and wouldn’t be upset if they were scrapped - as long as I still had a phone number for emergencies.

I’m still baffled by the “couldn’t deteriorate that quickly” comment, as it sounds as if you’ve possibly had a relapse. In the past, I’ve literally gone to bed fine, but woken up unable to feel my feet, so how fast is “too fast” to be possible? Although I did recover from that eventually, so it wasn’t irreversible - but I didn’t know that at the time.

Tina

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Hi Tina,

When I first started having symptons(pre DX) i had drop foot which got worse over the next few months, but then I had an almost complete recovery. This lasted for about 3 months after which i had further attacks from which recoverey was very limited. This last year 14 months I’ve had attack after attack and I went from using aq stick to using a walking frame with vy each timery little improvement if any each time, also my left arm has become weak and the hand has become clawed with very limited use. I have to use an electric buggy but more and more a attendent propelled wheelchair as my left leg is as much use as a chocolate fireguard. My nursetried over and over again to get me in to see a neuro, which she eventually managed. I had said appointment with a follow up which would have been the 27th of this month, which was cancelled by the other MS nurse because she wrongly thought I’d ben seeing my nurse weekly not monthly as was the case (who keeps the appointment records at the hospital? not her by sound of it
) even though my nurse kept meticulous records. Over the last few weeksanother attack it seems has made my legs weakerso standing up or walking are becoming harder and harder which the nurse said was impossible as it was too fast. I argued the point that I was the one with MS and I wasn’t imagining it or lying. i got a phone call saying i would get to see my MS nurse and if there was time I would get fitted in to see a neurologist next Monday (maybe). So i await then but wont hold my breath, or have a party in anticipation. all I want to know, and if there is, is there some treatment fo prolong my ability to take the few steps i was able to and sometimes still can on my frame.

Sorry I keep mithering on, but procrastination is one of the few things I’m still quite good at lol. Thankyou for your patience and help,

Kevin

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Hi again Kevin. It is pretty obvious that you are still feeling very overwhelmed with grief for your son…and that is normal…but with the addition of your brother and how badly he is affected by MS…no wonder you are in such a dark place, with no visible light at the end of your tunnel.

I am not sure of you are saying you are now having counselling or not. If not, please see your Gp for an urgent referral.

It is going to take time for you to work your way through all this. But you have to want to do that first. Somewhere really deep down inside you, youll find the old Kevin...hell be there somewhere, I`m sure.

Let him come out and help you get stronger.

luv Pollx

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thanks Pollx, I’m not recieving councelling, it was my decission not to for reasons I can’t easily explain. But having said that, I found that I was able to cope better as time passed and could talk about my son coherently and with far less heartbreak, that’s not to say the pain was any less, but I was able to have him, the memories, back in my life and talk and be talked to about him. Then on his birthday I recieved all the stuff from the hospital, and found out I was not exactly lied to but told an untruth in the letter knocked me back on my heels (was I able to stand that long lol). As I have said I just wanted to know, or maybe be treated in some way that might prolong my ability to take my limited walking and indipendence.

I know my disappointment led to me saying some rather foolish things and I let it all over affect me, but I have a daughter and twin grandsons, who after i’d seen and talked to made me realise how stupid and selfish my self pity was and, whilst not feeling less upset by my treatment, has made me realise it’s not as bad as I first felt. No matter what though I still want some neuro time and some treatment if possible.

Thank you everyone who talked to me on here, even though I must have seemed a self centered, self pitying, fool

Kevin