Neuro from hell again!! x

New diagnosis and before diagnosis
1

Hi All!

I’ve just had a shocking phone conversation with the MS specialist’s secretary!!!

Longish story but I’ll try & explain background briefly - in a nutshell…my neurospinal surgeon (lovely man) says he believes its neurological and in particular demyelation - he refered me ‘urgently’ to a neurologist Mr H

First time I saw Mr H (after an 8 month wait) I was with with hubby and he did a very brief exam - just foot scrape & knee knocking - said he believed my problem was lower back of the head or cervical spine and sent me for another brain MRI

This one showed the same as the first one - frontal lobe lesions and enlarged pituitary gland and so he promptly dismissed me without seeing me again and referred me back to neurospinal doc.

I swa the Neurospinal doc in September 2012 and he and 2 other doctors examined me fully - they were really concerned the Neurospinal said he would pnone MR H Neuro that afternoon

Lo & behold I got a swift appointment and saw Mr H Neuro 2 weeks later - for 5 minutes!!

He treated me like dirt to be honest - he didn’t have my notes at all - or any scan results - all he did was keep repeating ‘I have no explanation’ again & again! He even complained about the neurospinal 'sending people for me to deal with"

When I asked about further tests he said there were no tests!!

Then as I walked out in tears he said he was referring me to an MS specialist!!! and the nurse gave me a name!

I waited & waited - no appointment came - so phoned the MS Specialist secretary last week - she said she had never heard of me and had not even had a referral. So she looked at Mr H Neuros notes she said it was there but that he hadnt sent it - it was just sitting there!

She said she would look into it and phoned me yesterday - only to tell me the MS specialist has referred me back to MR H Neuro - as he has not done the right tests!!

She also said that in order to see the MS Specialist you have to have a definite diagnosis of MS - not a possible diagnosis like i have!!

I have refused to go back to Mr H Neuro - I’d rather eat s__t than see that arrogant little man again!!

The MS Secretary has told me to make an official complaint about him!! My GP is totally frustrated & feels helpless! But even she said I should make a complaint to the Medical Director!

All well and good but where the hell does that leave me in the meantime???

I feel so daunted!!! xxxjenxxxx

2

Oh Jen, I’m so sorry you have had such a horrible time. Isn’t it bad enough that we feel like s…t with pain etc without some little toad treating us like s…t and ignoring our symptoms. I’m sure there must be an easier way to get a diagnosis than to just spend all our time jumping through hoops! Make a complaint against him, he shouldn’t be practising if he has no bedside manner.

Take care, Debx

3

Oh filtered word - that is crazy :frowning:

No way no how should you ever have to go through another session with that appalling man!

There must be an alternative. Even if you have to go out of the area, there must be someone your GP can send you to instead. Is there any way that you could afford a private consultation to avoid another wait? (It would be about £150 or so.)

Do you know what tests are missing btw? Maybe your GP could order them to speed things up?

So frustrated for you! :frowning:

Karen x

4

Oh no Jen - what a palava! I agree with Karen, is it feasible to be referred elsewhere, I know with your job situation a private neuro may just not be an option right now. I know it seems bad but at least all the other medical professionals are on your side. Defo a good idea to get the GP doing the missing tests if that speeds things up.

Hugs jen! Oh on a another note just remind me where you live. I got referred for a second opinion and was seen in 3months and then got sent to MS specialist who I saw a month after that so pretty quick. I guess it’s a postcode lottery though!

Hope you get it sorted.

Reemz

X

5

Hi Jen,

That is such an awful way to be treated when you are so vulnerable and frightened for your health. Surely with all the stories of bad treatment and poor practise that many people experience on this forum(including myself) can’t the MS society challenge how people are treated by what seems to be a great deal of Dr’s that should surely have empathy and compassion. I don’t buy the ‘it’s because they are so busy’ rubbish. I am a clinician in the NHS and I do not treat individuals who come to see me in that way and I would be ashamed at my practise if I did.

Why oh why can nothing be done to change this!!???

Dee x

6

Hi Jen,

That is such an awful way to be treated when you are so vulnerable and frightened for your health. Surely with all the stories of bad treatment and poor practise that many people experience on this forum(including myself) can’t the MS society challenge how people are treated by what seems to be a great deal of Dr’s that should surely have empathy and compassion. I don’t buy the ‘it’s because they are so busy’ rubbish. I am a clinician in the NHS and I do not treat individuals who come to see me in that way and I would be ashamed at my practise if I did.

Why oh why can nothing be done to change this!!???

Dee x

7

My sympathy is with you through my experience. All I can say is that I asked my GP for a re referral to a new neuro, I’ve seen him today and as you may have seen from my posts today, it was a thoroughly re affirming experience and I am one very happy, relieved young lady tonight. Well ok, I lied about the young…but the rest is true !!! Xx

8

Thanks all xxx It was awful - I’ll never forget it to be honest! I was so ill that day and when I saw him I’d just found out that the Uni were making me redundant because I’d been off for 4 months - he may as well have kicked me in the teeth!

When I came out of his office I don’t think I’ve ever felt so low.

If it wasn’t for the outstanding support so far from my 2 GP’s and the excellent attitude, treatment and care from the neurospinal and endocrinologist - I would literally have give up and found som hole to crawl into!

I’m not going back to him - if I did I think I would end up in court for GBH!! lol

The MS secretary recomended another neurologist she is also secretary for - but it’ll be a 6 month wait- so I’m going to ask my GP to refer me to her. Or I’ll go private as you say Karen x

I’ve got a double appointment with my GP soon and she said we’ll sit and go through all the options then.

I’ve got a full spinal MRI this morning too - hopefully on a decent scanner this time as they have had a brand new all singing all dancing one apparently! Knowing my luck though I’ll be in the old one in the pertacabin in the car park again!! LOLOL

Just want to say thanks again too - where would we all be without each other eh!!

xxjenxxxxxxxxxx

PS

Reemz - I live in South Wales xxxx

Karen - the MS Secretary is sending a copy of the referral letter to my GP so we should know before my appoinment xx

Dee - I totally agree! All these bad treatment stories should be gathered together and taken right to the top!! I’ve never heard so many complaints in any area other than neurology tbh xx It’s just plain WRONG and if I hadn’t experienced it myself I would never have believed it!!!

Grandma - I’m definitely making the complaint - my GP said she’d help me and the MS seretary was pushing it - which makes me think he may well have behaved this way before with others

Catherine - I’m 21 tomorrow!!! xx

9

That is awful for you.

Upset as I was by your news, there was on part of your post that made me laugh out loud, although not very nicely: it was the bit about the ‘MS specialist’ who only sees confirmed cases of MS… Correct me if I’m wrong, but the most difficult bit about MS for a doctor is diagnosing it. The rest is child’s play by comparison, I’d have thought. So their logic here is…what exactly?

Gaaa. What a shower. I really hope you get put in touch with some normal, sensible neurologist very soon. They do exist, honestly.

Alison

x