Neuro from hell has pretty well pushed me over the edge!!

New diagnosis and before diagnosis
1

Hi All x I’m so at the end of my tether - I just don’t know where or who to turn to x

I saw the neurospinal consultant a several weeks ago and he was extremely concerned about me and said he was adamant that he believes my symptoms & signs are neurological. He was shocked that I had had to wait 8 months for the ‘urgent’ referral he sent to the neurologist last November and was even more concerned nothing had been done for me - not even meds given - basically that I had been left in this condition all this time, He said he would contact the neurologist direct that afternoon & order more scans done. The appointment came through to see the Neurologist today.

Yesterday I saw the lovely Endocrinologist who said that he is satisfied that my pituitary gland is functioning even though it is enlarged - but that he will be checking long term with regular MRI’s specifically to monitor it. He also said that as far as he is concerned my clinical signs now look to be even more neurological now that endocrine causes have been ruled out.

So - rather naively - off I went to see the Neurologist this morning hoping for some answers, some hope of a more thorough exploration and boy was he particularly arrogant - absolutely horrible to be honest!

He did not have my notes - he did not have my scan results - he mixed them up with the ones the Neurospinal has ordered and have not even been done. He sat there leaning back, legs crossed, hands behind his head, staring at the wall while waiting for the nurse to go searching for my file & the scans - he did not say a word to me.

I told him that he had written a letter a few months ago saying I had lesions on my frontal lobe but no cord compression seen on the cervical scan. He sighed loudly then phoned his secretary so she could find t & read it out to him - strangely enough he didn’t even have to give my name to her - she knew he was with me. He put down the phone and said’

‘I have no explanation’

I said ok where do we go from here and he replied

‘Nowhwere - I have no explanation!!!’

I tried to explain to him how badly this is affecting my life and that I had even lost my job because of it - how I’ve been from pillar to post for the last few years - with everyone else saying it’s neurological and he said

‘That’s not my fault is it!! I tell you I have no explanation!’ and he then turned his back on me!!

By now I was crying uncontrollably and shaking from head to toe.

I tried again and asked please are there alternative possiblities or any alternative tests. I explained that I had been in touch with the MS Society after MS had been mentioned by 4 seperate doctors over the last year and that my symptoms and signs are consistant with MS and practically everything else other than a neurological explanation had now been ruled out.

He said ‘There are no other tests - you’ve had the brain scan & cervical scan so you do NOT have MS!!’ He was actually smirking at me!! He said that the neurospinal consultant ‘does this he decides it neurological and sends these people to me expecting me to deal with them!’

He then turned to the nurse and told her to make a referal to his colleague who is the MS specilaist. She wrote it down & I walked out in a terrible state.

I must say I have NEVER been treated like that by anyone - let alone someone who is supposed to be a doctor - supposed to be on your side!! He was arrogant and patronising to the extreme!

I’m angry

I’m distraght

I feel like giving up - my life is an utter mess!!! I just can’t take any more of all this xxxxxxx

2

Oh love, I am sorry this has happened to you. But my story is very similar and my next appointment could just trun out to go the same way your`s has.

For around 14 years, I have seen 13 neuros, had 4 MRIs, 2 LPs, 2 EMG tests and gallons of blood tested.

These tests have ruled out Hughes, HIV, Tropical Paraparesis, cancer or trapped nerves.

I have had diagnoses of 95% PPMS, HSP, pastic paraparesis, cause unknown, and neuros have said they dont know what to do with me!

When I voiced my discontent at being left hanging with no firm diagnosis, a referral to a top MS man, was sent, but refused!

You and I and countless others just feel we have been sadly let down by neuros in general.

Contrary to this, I have had wonderful treatment from OTs, district nurses, social services staff, wheelchair services and others. My GP is good but feels it is up to the neuros to sort me out.

Where will it all end?

luv Pollx

3

I’m so sorry Jen. You sound like you’ve had a bloody awful experience and a neuro from hell. If I were you I would be tempted to put in a complaint to PALS. His attitude stinks and he hasn’t listened to you at all.

On the positive there is one small good thing that has come out of this - you’re being referred to an MS specialist and hopefully they will be much better than him! Do you know where you’ll be referred to?

Jen are you getting any help from your GP in terms of meds and have you considered DLA partiuculalrly if you’re struggling and can’t want work. I hope you’re speaking to citizens advice bureau about your job situation for advice - it’s rotten what’s happened to you.

I’ll share me story Jen - My neuro symptoms are on the mild scale compared to a lot of people here and you probably remember the first neuro I saw who was an MS specialist was terribel - didn’t help, didn’t explain I felt like crying. I went for a second opinion to a general neuro who said your two MRI’s show non-specific lesions (?Normal), your neuro exam shows minor sensory disturbance but potherwise normal. When I asked him what I had then he said he can’t say for definite but it sounds like MS. I then was referred to another MS specialist who saw me, was very thorough and said it sounded like I’d had two clear epsiodes of symptoms but as MRI’s essentially normal no treatment but they agreed possible MS. I was offered an LP and EVP but have left it as I can work fine and am feeling actually better than I have in a long time at present and it still won’t confirm MS or give me treatment. So we’re waiting for something new to happen.

What I’m saying is you’re not wrong to think it still could be MS even if your MRI is clear. It makes it less likely but not a no. Your neuro hasn’t listened to you. I think even if he’d said look I’m not sure, we’ve checked for this, that and the other other these are the options left you would have gone away so much happier having been involved in the care even if you’re not diagnosed. I hope the MS soecialist you get is good and actually does listen and you get seen soon. In the mean time how active/supportive is your GP - make sure you’re getting the meds you need to make things easier Jen. If you’re GP is not listening see another GP.

It’s upsetting and frustrating and feels like a never ending journey but no one else will fight it - you have to to get your life back on track and the first step is correct meds and the second step someone who is going to listen.

Don’t give up Jen. We’re all here to support you - you know you’re not alone in your struggle for a diagnosis and help.

Virtual Cuddles.

Reemz

X

4

What a horrible man.

There is one good thing to take away from this, and that is the referral to an MS specialist. I hope that he/she will be a decent human being and not some mutant from another galaxy.

I don’t know what else to say except that I am so sorry that this has happened. It should not happen, it is all wrong. Really upset on your behalf.

Alison

x

5

Oh Reemz I’m just so daunted xxx My whole world seems to be collapsing around me & no matter what I do I just can’t stop it

I’ve been told by 2 solicitors that I have a definite unfair dismissal claim and a very strong disability discrimination case. Taking it to tribunal may get me some financial compensation but nowhere near enough to get me out of the financial mess I find myself facing - and nothing is certain in this climate - I could lose the discrimination case altogether x I’m having £71 per week JSA and I get DLA every month for my original disability - but my mortgage is £689 so I’ve got no chance long term x It’s at times like this that I wish I lived in the USA where compensation can at least make lives easier financially!!!

I just want my job back - I worked so hard over the last 15 years despite a disability - only for these new symptoms to literally ‘finish’ me off! I’m just missing my work terribly! I feel useless!!

I just want my life back - I’m sick of struggling and getting nowhere - I feel like because of my long term disability I have become a patient patient! I’ve just been quietly waiting for the next appointment, the next test, then the next appointment & the next test - moving forward then getting a smack in the teeth like I did this morning!!

Then because I feel so ill all the time - the hug was so bad last week I had 9 days of hell with it - I feel to weak to fight to be honest!!

Sorry - I’m in a right state I know!! xxxxjenxxxx

6

Forgot to say - they’ve given me Baclofen now - I’m starting on 5mg 3 times a day then increasing slowly xxx The neurospinal surgeon prescribed it for me as well as something to help with the fatigue - I can start these once I get used to the Baclofen xx

7

Poll xxxx I know how much you have gone through and are still going through my lovely xxx I soooo hope you get a good appointment xxxx

Alison - thanks for your kind words xxxxxxxx

8

Hi Jen What an absolute w*****r he is. If he is referring you to the MS specialist, surely he must think something neurological is going on. Maybe he i’s totally out of his depth and cannot deal with this at all. I am so sorry he upset you so much, he is a total pig! I hope the MS specialist will help you Jen. Thinking of you, Teresa xx

9

You would not believe just how horrible he was Teresa! When he said ‘I have no explanation’ - I was gobsmacked!! Did he think I was going to say oh ok! thank you very much and walk out??

When I saw him in July I thought he was ok - he listened to my symptoms, asked a couple of questions, did a very quick reflex test on my feet and knees and said he reckoned th problem was in my cervical spine or lower brain - he pointed to the back of his head. He sent me for a brain and cervical scan.

The difference was that time my big burly hubby was sitting there! I wish I’d taken someone with me this time!!

xxxjenxxxx

10

Oh Jen I’m so sorry you were treated like that. He must have gone to the same charm school as my last Neuro! I asked my gp to refer me for a second opinion and she said I could choose any hospital I want. It might be worth checking with yours. I know you mentioned on your post in another thread about an employment tribunal and I think I messaged you about it. I have been through a tribunal for unfair dismissal and disability discrimination and won. Its tough but worth it. Check your home insurance policy, if you took the legal cover then that will pay legal fees. You are a strong person and have fought for so long so don’t give up. I have felt the same and the support here has kept me going. Take care and big hugs Xxx

11

OMG. Sure, we all know that some neuros have zero bedside manner, but normally that can be forgiven when they actually do their job well! This guy’s behaviour is so out of order I’m speechless.

You poor thing to have to go through that and come out with no answers. Unforgivable. Absolutely unforgivable. Jeez.

Humungous ((((((((((HUGS))))))))))

Karen x

12

Bl**dy hell!!! What disgusting disgusting behaviour and so far less than human, less than animal - arrogant pr*ck. Why on earth are people like him in these jobs? If he doesn’t want to help patients what on earth is he doing in this game? I’m shocked, utterly shocked.

GRRRRR

Love and hugs to you Dxx

13

thanks guys xxxxxxxxx

I’m feeling a little bit better this evening xx

When I phoned my hubby he said he didn’t like his attitude last time - he felt he rushed it - but to be honest I thought 5/10 minutes for a 1st consultation was maybe the norm (??) so I didn’t really notice

Thinking about it his flippant comment about the neurospinal doc could indicate the reason for his attitude to me - I think he was possibly annoyed that he rang him and had a word with him about me. Doesn’t excuse it though xxxx

I don’t really know where to go from here - I don’t think I want to see the MS specialist he is referring me too - he has the same secretary so probably will have the same attitude!!

I’m going to try & see my GP on Friday and possibly go private. I’m up in London in a couple of weeks - anybody recommend a good neuro up there??? xxxxxxjenxxxx

14

Everything I have heard about Dr Richard Nicholas is brilliant so I would go with him if I were you. To reinforce that, I once asked my neuro (a well known MS specialist) who a friend from here should see after many years of no answers and he said Dr N. He’s known as an excellent general neurologist as well as an MS specialist. He’s also lovely by all accounts.

http://www.privatehealth.co.uk/privatespecialists/consultants-directory/?EntryId43=27989

It is SO wrong that you have to consider doing this :frowning:

Karen x

15

I completely agree with Karen it is very wrong the system has let you down.

But I’ve also heard good things mentioned by others about Dr Richard Nicholas.

So he sounds like a good bet if you’re going private.

I’m still horrified at your neuro’s attitude. It’s completely wrong!

Reemz

X

16

Oh my goodness - You must complain. This is horrendous. Your hospital will have a PALS department.

It should be taken very seriously. They should not be able to get away with this. Good Luck xxx

17

Mega, mega hugs for you. What a horrible experience. He sounds like he and a neuro I had the non-pleasure of dealing with must have graduated from the same class :frowning:

There are some right arrogant pigs in the neurology field. I do wonder sometimes if there is a class they take Appalling Arrogance 101 followed by Reducing a Patient to Tears (Honours).

My personal neuro from Hell story is when I was referred to a MS specialist and after driving for 2 and half hours from out in the country where I lived arrived to be told by his secratry that he had cancelled my appointment! As I was questioning the secretary about this and going slightly demented he walked past and overheard and said that yes he had cancelled it as he didn’t need to see me! I said that I needed to see him and since I was here now he might as well see me. With very bad grace he half showed me into his room and said he didn’t need to see me as he rememebred me fom my hospital notes from when I had been admitted and in his opinion I did not have MS, I needed a psychiatrist!

The damage and self doubt that man did to me was unbelievable. His words stopped me seeing neurologists for 2 valuable years where I might have been diagnosed and then made it so much harder for me to accept the diagnosis when I did get it and kept me in denial and disbelief for far longer than I needed to be. These doctors with their appalling attitudres should be struck off because they break the first rule of medicine, “Do no harm.”

But a couple of really important points do come to mind when I read your story. Firstly, take your husband or a friend with you to your appointments. It makes it much harder for doctors to brush you off and your support person is able to ask questions on your behalf etc if you start to feel intimidated by dick head neuros and if they do behave badly you have a witness.

The second point is a tad tricky so bear with me while I try to explain and please don’t be offended. Sometimes when a dignosis is not clear cut and MRIs come back as normal in the early stages some neurologists can be tempted to see the symptoms as being pschological and will diagnose the person with Converion Disorder. Which is what my neuro from Hell was wanting to do…

http://www.minddisorders.com/Br-Del/Conversion-disorder.html#b

Now the tricky part. Neurologists are NOT psychiatrists and are not qualified to make this diagnosis, not that it stops some from trying. One of the old diagnostic criteria for CD used to be where the person has a financial gain to be made from their symptoms such as a compensation claim. And some neuros will still latch on to this and see it as a reason to make the diagnosis (incorrectly). So my suggestion is that you don’t mention to your doctor or the new neuro that you are seeing solicitors or have sought advice regarding unfair dismissal and discrimination. Let them examine you based purely on medical grounds and keep the other stuff under your hat for now.

I really hope you find a decent neuro and get some answers. Trust me, good neuros are out there. I am now under a gem of a neuro but there is no point my recommending her to you as I live in Australia and I doubt you would want to travel that far :slight_smile:

All the very best and let us know how you get on,

Belinda

18

Karen thanks! I’m seeing my GP tomorrow - they referred me to an MS specialist in Cardiff a while back but there is a very long wait to see him apparently - maybe I could speed things up by seeing him privately. I really don’t fancy seeing the one the neuro referred me to yesterday x I’ll look in to Dr N & discuss this with GP too xxxxxx

Belinda - bless you - that must have been awful! But what happened to you is not unusual - so many people have bad experiences with neuros (many have excellent ones too though!). I guess they are only human! Reading between the lines I think the one I saw yesterday has a bit of an issue with the consultant who referred me - but even if they do see people with CD or people possibly after finacial gain etc - they should still NEVER treat someone like that!

Don’t worry - you have not offended me!!! Conversion Disorder is something I’m very aware of - I used to be a psychiatric nurse many moons ago - so I’m very open to the possinbilities of this x

Unfortunately I’ve lived with a chronic disability for a long time following an RTA 16years ago - in which I received serious spinal injuries. When these new symptoms started several years ago I naturally blamed them on my spine.

As I’m in a relatively high pressured job (or was until a few weeks ago!!) I’ve also asked several of the the various types of doctors I’ve seen if it could possibly be stress related. The response has always been a smile and a 'no - absolutely not - you have clear physical signs & abnormal test results that could NOT be put down to it being psychosomatic or stress related.

As for monetary gain - what a flipping laugh!! I think if any one of them dared think that of me I would hit the proverbial roof! I’m facing huge financial loss - even the loss of my home - because of this illness - it’s totally the other way round and they know it!!

In my case I have now lost my job last month directly because of the health problems I have been suffering on top of my disability for the last 5 years - any financial gain from a tribunal would not go anywhere near to compensating my loss of salary and the position I have worked so hard for - for so many years.

The last time I saw this particular nasty neuro in June he knew what my job was and was well aware that I desperately wanted answers so I could get back to work after being off for the previous 4 months!

What I’m trying to say is - I understand what you mean but neither of those possible reasons for treating me like he did yesterday apply in my case xxxxxjenxxxxxx

19

Hi Jen,

Sorry if I misinterpreted things and I am very glad to hear you have worked as a psych nurse in the past so you are aware of these things. I wasn’t in any way implying that you might have CD, just that some neuros are such prats that they tend to brush off people who aren’t in the immediate clear cut diagnosis basket as “it all being in your head.” A*se wipes that they are :frowning:

And NOTHING excuses the way the neuro treated you. Absolutely nothing. He was a jerk. End of story. Hopefully a referral to a new neuro will be a better experience.

B x

20

I does sound very likely that this, or something else wholly unrelated to you, was at work here. Plus, of course, the obvious fact that the man is a five star, ocean-going s***.

I hope that you are feeling a bit less bruised today.

Alison

x