Discharged by my neurologist

Everyday living
1

Not because I am any better and not because I am not getting any worse because I am steadily getting worse, but because it is a waste of his time, and mine I suppose, but I don’t suppose my time matters to him. So that is it, I no longer have a neurologist. He tells me I can contact the ms nurses if necessary, but my experience of them in the six years since my diagnosis is that they rarely return telephone calls, and if they do, the stock answer, no matter what the question, seems to be “you might have an infection.” and that they are gatekeepers for the neurologists.

I can see his point, but I still believe this is a money saving exercise. I just wondered if this is happening nationally, or just in certain areas, or even certain hospitals, or just down to individual neurologists deciding some of us just aren’t worth it.

Then yesterday I read in the paper that gp’s are being told by the nhs to treat foreigners, even if they are not entitled to free nhs care because it is their human right!!

2

Hi Flowerpot My MS specialist discharged me after his first meeting with me. I am PPMS and he said there was nothing he could do for me so there was no point in seeing me again unless I wanted to see him. Teresa xx

3

I have a six monthly neuro check up although that is more because I’m on Tysabri than anything else. I think it’s more likely to be money saving in certain NHS catchment areas than an across the board change. Immigrants get more rights in this country than the people that pay for them to live here. That’s before we even touch on how disabled people are treated.

4

Yes; I have not seen a Neurologist in over 20 years. I take the attitude that if they have nothing to say to me and I definitely have nothing to say to them; what’s the point (PPMS bit pointless)?

I also watched that programme about NHS immigration and was most surprised to learn that primary care (GP) is free and legal to anybody in the world. Secondary Care (Hospitals) charge for their service but are owed £40 million on people from abroad having the service then doing a runner back to their country of origin.

How to stop this I have no idea but I’ve an idea. Why don’t we contact a French company to sub contract the work back to the NHS and cut down on these ruthless disabled who claim benefits like ESA and DLA. After we paid them mega bucks we would have enough for these Secondary Care runners. Good idea eh!

George

5

Yes, it appears to be the same for me. I saw my neurologist at Frimley Park Hospital every six months for a long time but he thought it was ok to discharge me and put me on nurse alert if anything goes amiss. I once tried to call my ms nurse. He is always out, and you can’t leave a message. I was also taken off Avonex a few years ago with a view to a possible replacement as I couldn’t take that lance any more.

Here, sit I, broken hearted etc etc…

Mark

6

I am not going to get into the human rights/immigration debate…But what I can say safely, is that doctors, from the time they begin their training take an oath which morally obliges them to treat the patient in front of them to the best of their ability. Thus, your doctor has taken an oath to treat you to the best of his or her ability, and by dismissing any of you and saying there is nothing they can do for you, well a) it is a big old lie, with new treatments emerging, clinical trials for you to sign up to and treatment of symptoms being a just a few ways that they can treat you and b) they are breaking an oath of the profession. Shame on them. If you still think you would benefit from treatment, contact PALS. I was told early on in my diagnosis there was nothing that could be done. I was fortunate enough to get a 2nd opinion and had a top neurologist tell me to never let anyone tell me there was nothing that could be done. Sorry rant over, but these situations make my blood boil Take care of yourself

7

Hi George. My son is in his second year in Australia. He hasn’t got round to signing up with Medicare yet. Needs a shove! anyway, he has had to go to the doctor twice recently and it cost him $80 dollars each time and pay for prescription after that. Maybe that might make him hurry to Medicare. His girlfriend is registered with Medicare and gets free doctor consult but has to pay for hospital procedures ie smear test.

Hi Flowerpot. I am spms and I see my neurologist every six months and have a review of meds depending on how I am at the time. My brother lives in the Republic of Ireland and has ppms and he also sees a neurologist every six months. He has just finished a course of chemo and put on some new drug for balance. Will ask him what it is and if it has been of any use.

8

If you are not happy with this situation, your PCT should have a complaints procedure. If this is anything the one I have used it is good and will set off all sorts of alarm bells ringing,especially in the Neurotics ears.Tell the truth and he will be asked for his version.

The MS Nurses are very hard pressed and I’ve found that the secretary holds the ‘Key to the Ivory Tower’, wherein languishes the Neurotic.This might be money saving or it could be clearing the books of something THEY cannot cure or particularly help.

Even if you don’t go to appointments,one day it may be handy to be on the books.DVLA possibly,a trial(Drugs not negligence), blah blah

Best wishes, Wb

9

When I was dx in 95 the neurologist sent me away to “live a healthy life” I only got involved again a couple of years ago when I got a new GP and it became clear that I was going SP.

Now I see the neurologist every six months. We have a nice little chat and I go back home. Pointless really but I’m hanging in there for a new treatment for SP because I’m sure it’s just around the corner. I want to be at the front of the queue when something becomes available not at the back of the line waiting for a referral.

Jane

10

Dishcharging you is a figure massaging excercise gratis of this oh so wonderful government. Once the Neuro has you on treatment and is happy with the fact the drugs aren’t making you sicker/if you decide to accept their treatment, they then discharge you back to the GP, this gets you off their patient list & makes it look as though you have been succesfully dealt with and satisfies the stats. If you then get worse, you have to go through the whole process again - you can’t just call the neuro’s office and make an appointment (that’s far too much common sense), you have to go back to the GP, who then has to refer you to a neuro again, you wait for months to see the neuro and so it goes around and around. This is not the neuro’s being lazy etc, it is the process they are obliged to follow I believe. Ridiculous.

I’ve been diagnosed since Dec 2011 and have never been so disolutioned in my life - the support for many of us is non existent, we are basically given a bunch of booklets and left to get on with it - a no. for an MS nurse who doesn’t seem to listen and has too many patients to see - despite the fact I have loss of grip and told mine a stick would be no good because I wouldn’t trust my weight on it in case my grip let go, as it often does, and I felt this would be more likely to cause me to fall, so she brought me a stick which has sat in the corner since day 1 because as I told her, I can’t use it. Mine is supposed to be RRMS, only since the start of symptoms in June last year there seems to have been no remittance, just ever changinging symptoms rthat never die down.

I’ve decided to give up on the NHS - they’ve given me the runaround so much - would prefer not to take their drugs having researched them & not wanting to risk the damage they can cause, they won’t let me have Sativex, cannabis is illegal, though I experimented out of pure desperation having been left in a real state and found it hugely helpful - apart from the fact it’s natural and won’t mess up my liver etc. But obviously it’s illegal and I can’t afford it, so I have nothing. That would be my choice over the pharmaceutical rubbish they try to peddle - the high dose of steroids they gave me (after it was too late of course, having left me 6 months waiting for my results with no intervention whatsoever, with my hands and arms getting slowly worse till I couldn’t even write my own name any more and still can’t) - so by the time they pulled their fingers out, it was way too late and the damage was done - all I got off the steroids was hallucinations, panic attacks and pancreatitis - never again!

I’ve been reading about the research that convinces me that CCSVI holds the best answer to the cause - Multiple Sclerosis: The Image & It’s Message - The Meaning of the Classic Lesion Forms by Dr F Alfons Schelling MD, which sounds more plausible than some pretty heavy duty drugs that no one really seems to know much about and that can give side effects and damage the liver etc CCSVI has given some impressive results. My theory is this is not being offered as an alternative because then the greedy pharma co’s would lose a lot of money. The boss of the MS society etc would have to give up their fat salary and posh car too no doubt, if this proved to be a definitive cure for everyone.

Excuse my cynicism but so far, I am seriously unimpressed with the whole lot of it. A friends dog was recently diagnosed with a auto immune disease and it was deemed kinder to put her to sleep. That’s how I feel about myself sometimes.

11

Hi,

I didnt get anything out of seeing my neuro so began seeing the ms nurses every six months .

I have found this is so much more useful and the physio sometimes joins us as well. I have PPMS but still find these sessions useful. They are hard to contact by phone but maybe try and set something similar up, if you feel it would be worthwhile.

12

Dear Miss 1969, you are a heretic…Bravo.

I’m falling apart waiting for £8,000 to go to Poland for Liberation and Stenting,£10,00 to take a ‘lady’ with me. There is NOTHING on offer in this country.

I’m so excited about my annual 20 minutes with my ‘All Powerful’ Neurologist just before Christmas.I’m thinking of taking him a wreath. Once he’s finished being totally unconcerned there’s a good chance I’ll ‘scoot’ out of his revered company after 3-4 minutes,but not after telling him I’ve recorded what wasn’t said.

Wb

ps In 11 years since diagnosis I’ve never had more than 20 minutes a year with whichever ‘Demi-god’ has been lucky enough to get to enjoy my company.

13

To those who are as Woblyboy put it ‘heretics’ please read the Barts blog. You’ll see just how wrong you are. There’s lots and lots of research going on.

Yes, Jayne 1969 it’s scandalous that your neuro has discharged you. You should complain to your local PALS and get back on his list. This is plain wrong and cruel behaviour by a neuro who should know better. Read the comments from people with PPMS who do see their MS nurse. This should not have happened to you.

Those ‘toxic’ drugs work. If you are on them, you will be seen every six months. You’ll be checked monthly if you are on Tysabri.

We don’t need ill-informed rants about fat neuros - what we do need to do is to kick Big Pharma. Read the ECTRIMS comments by Professor Giovannoni and be angry - be very angry. There’s a drug to help stop progression. It’s atorvastatin at 80mg and reduces the inflammation by 40%. This is wonderful - but like LDN, it’s out of patent and the Pharma companies won’t fund a trial. Shockingly scandalous. Let’s hope that our neuros prescribe it anyway and sod Big Pharma.

14

For you, Jayne, and you, flowerpot, the answer is PALS. Contact them and make a formal complaint.

My experience is totally different.

First neurologist was seen privately - and he quickly plugged me back into the NHS, told me to be prepared for a relapse, what to do, and how to do it. When I followed his instructions, he had left the month before - but the MS Nurse acted very quickly, had me on IV Steroids within days, and into the locum Neurologist even faster.

Second neurologist (the locum from the previous paragraph) stayed for three years. He is the guy who got me into the FES programme - without which I would be almost immobile.

The third one - have not met him/her yet, but there is one in place. I see Neuro and MS Nurse alternately at six month intervals, and the next visit will be to the new Neuro.

The MS Nurses are good - both of them. Phone calls and e-mails are returned within 48 hours and normally within 24 hours. They act fast as well. Referrals to a local physio or neuro-physio are done so quickly that the next thing I get is a phone call to make an appointment - and if there is a further problem, I have the mobile phone number for the neuro-physio, and she responds just as fast.

The Americans say “Your gas mileage may vary”, we say “Postcode Lottery”, and if you get good service you stay with it.
If you do not get good service, complain,get a new referral from your GP, investigate another nearby hospital, but do not just lie down and take it.

Geoff

15

Thank you for your replies - but to lapreguiceira - sorry but we are living this, so actually it’s YOU who is wrong, so your arrogance is insulting. and it’s not ill informed 'rant’s ’ about fat neuro’s as you blindly put it, it’s the truth and people need to know about just how poor the support is for many of us - don’t you read the things the MS Society write about our treatment and care being the worst in the EU? Obviously not. My neuro insulted me for the last time after my last visit in July - presented with the question what the hell am I going to do, I can’t write as a trained typist I am now stabbing at a keyboard with 2 fingers and a thumb I can’t walk much of the time or even get out of bed, rarely leave the house, a bowl of washing up can take me all day to do if indeed I can do it at all - his reply, you can’t type anymore, you might be able to do something else!!! Really, what’s that then be a matress tester from home, because that’s all I’m fit for now.

Seems to me they don’t want to even entertain the idea of CCSVI - and looking at the huge benefit that has been to a lot of people - many having their symptoms disappear after the op, their mobility and dexterity restored and damage reversed - seems to me that it’s people who blindly trust the junk they are injecting into their bodies that need to have a think. Why don’t they want us to have CCSVI ? Because then the greedy pharma co’s would be out of a huge fortune. I trust none of them now. And after a while these drugs stop working anyway - and could leave you will other damage.

I have complained - I even had to resort to putting up a complaint about this woeful process on the NHS Choices website just to get the results of my MRI scan - how come in 8 days after it started I KNEW I had MS but it took them 6 months to work it out, leaving me in a state that got worse, which maybe they could have halted with steroids if they’d given me them before the damage was done and not after it had wrecked me. Being passed from pillar to post and no one giving me an answer for 6 months - well 1 person did, a dappy Neuro receptionist told me when I had to get angry after being fobbed off for 6 months “don’t worry I don’t think you’ve got anything bad” - Really? Then months later ‘the not anything bad thing’ I had turns out to be MS as my instincts told me it was 6 months prior to the diagnosis!

The hospital I go to is supposed to be the best of all the ones in my area, with the highest rating - so going to any others with even longer waiting lists isn’t even worth the hassle.

To woblyboy a special thank you, seems like you know the score (despite someone having the gall to call you wrong too, you must be a liar like me according to that person - perhaps we’re just dreaming our experiences up!) If I had the money to give you to have the treatment that works instead of the guinea pig junk they tout to us all, that they have very little idea about it would seem, I really would so I wish you good luck in your search for the £8k.

So, to stop myself going around the twist, I have been investigating why the government is fraudulently kicking seriously ill/disabled off benefits - up to 73 a week are now dying after being declared fit for work and have been using my experience to bring it to the attention of the relevent authorities to have Cameron in front of the International Criminal Courts for crimes against his own people. And at least I am getting somewhere with that - before too long he will be answering to them why he is literally getting away with murder. Long overdue! My evidence is going to be used against him in the final Harrington report commissioned by Cameron regarding the unfit for purpose Work Capabilities Assessments, I’ve got the Equality & Human Rights Commission to start investigating why he is breaching disability laws too, so despite not being the MS Society and not getting a big fat wage or a flash car - seems that I am doing more to help people challenge this con of a system more than they are.

16

Well gosh, could you be more insulting?

I suppose you could. Please re-read my reply. At no point did I call you a liar. Please read the Barts blog. You’ll see why I was angry about big Pharma not funding trials for off patent drugs.

We are all ill with MS. There’s no need to be so aggressive and rude.

17

Well you seemed to have no problem insulting us with your ‘you are wrong’ a polite way of calling us liars when we tell you what our experiences have been & your remark about ‘fat neuros’ which I think you’ll find was your words not ours. Thanks for the link, but I prefer to do my own research and talk to real people of their experiences and I’ve spoken to many recently that have blindly accepted these drugs and have come off even worse than they were before. And it’s clear to me that there is something in the CCSVI which is more effective than blindly sticking yourself with poisons because you are told they are the answer, but even the MS Society are trying to dissuade people from it - well they would wouldn’t they, no MS sufferers no MS Society and the big fat pay cheque it brings. Other better MS organisations seem to be less blinkered. Seems strange to me that they are all different and yet all have the same % of remittance rate. Hmmm big pharma strikes again!

18

Okay, well I’ll rephrase it. You are mistaken. Read the Barts blog and you’ll see that real neurologists and researchers care.

Incidentally, many people fought for years to get access to those nasty drugs that you seem to hate so much.

As for CCSVI, it’s up to you. It may help and it may not.

By the way. I’m not arrogant. I have MS and as I fought like mad, along with many others back in 2000/02 to get access to the drugs that have kept me on my feet. I changed my life, adopted a strict diet that helped my nerve pain, took LDN, moved to a country where I feel well and not housebound and have had MS for 20 years.

You totally misread my post. I offered genuine advice about PALS and had great sympathy for your predicament. Not all neuros are bad and I was outraged that big Pharma probably won’t fund a trial to help people with progression.

As one who fought hard - I get very pi**ed off with Woblyboy’s accusations and comments. He has a different sort of MS and so the drugs won’t help. That doesn’t mean that they don’t work.

19

Jane, reading through this thread from the top I was really taken aback by this hostile response to lapreguiceira. Quite uncalled for and unjustified.

Alison

20

Yet again I am not mistaken as this is MY experience and is others it would appear from some other replies- your arrogance is even trying to tell me it’s not! Flower it up with any words you like it is YOU who is mistaken! Just don’t bother replying because you clearly know better than those of US who have had a p poor experience! Not sure how you have the brass neck to tell me I’m mistaken, when I have told you what has happened to ME in this woeful process, but you still have the gall to say I’m mistaken - but I guess some people are that arrogant. Just because some report you have read says that some bloke cares, you think it’s the same for all of them and all of us - and I for one am glad that Woblyboy has stated his experiences in an honest way - so what if he has a ‘different kind’ of MS - does that mean he should be ignored just because you don’t like it? I hope he comes back and gives you a piece of his mind for that little snipe! I’d rather listen to people like him with his honest account of what he’s been through, rather than someone who is defending the indefensible and being so insulting in the process.

Fortunately I am intelligent enough to fight my own battles and to research who to complain to, but thanks - PALS included - I did that over a year ago and where did it get me, sitting here with a Neuro who couldn’t give a toss and has been urged by the BMC to try to push everyone back to work when they are totally unfit to. And an MS nurse who gives me a stick despite knowing I can’t keep hold of anything in my hand and drop everything - that’s real good advice - if I had been stupid enough to use it, I’d probably be in hospital with fractures after falling.

Well good for you diet is said to be a good help, but as a vegetarian, I already know that. If the poisons are keeping you going thats good too, but I’ve spent a lifetime not wrecking my liver, so I think I’ll carry on protecting it from poisons that no one seems to have much a clue about. Perhaps these drugs have some kind of placebo effect who knows. Like I’ve said, I’ve spoken to many more who have been made more ill by this un natural junk and as the steroids made me 10 times more ill, I expect these poisons will do the same in my case.

I only hope that woblyboy isn’t put off from posting his true experiences because someone is “pissed off with him” for basically teling the truth and he has “a different kind of MS hat can’t be helped”, (let’s all ignore him then shall we??? I don’t think so!!! He has been a great help to me in this one - so please keep your rudeness to yourself and stop trying to silence such people, just because you don’t like what they say, because their opinion is important to me, even if not to the arrogant likes of you?