General Chat

As most of you know my eldest daughter was diagnosed with multiple sclerosis at 18, she is now nearly 30.

She went to see a new consultant a few months ago and was told, in front of some med students, that 'he' didn't think she had MS. He wanted to send her to see another consultant.

So I was mad then that he had announced this without further confirmation. The second consultant confirmed her orignal diagnosis of MS.

Whilst she was with the first consultant she had a chest X ray. This morning she phoned me to say she had just received a letter from him stating: I have diagnosed that you have pulmonary sarcoidosis and you need to have a CT scan. Do not worry blah blah. So now I am angry she got this in a letter and not face to face!

This consultant, and I use the term loosely, seems hell bent on disproving her MS diagnosis.

FGS I saw the multi site plaques on her MRI scan, her original neurologist is mine and I trust him completely. What is this man up to?

Rant over.

Sue xx

hes showing his position .......up his own b*m!!!

let him have control of this situation and stew in it .....

Your daughter has every right to ask to see another Doctor and every right to say she will NOT see this b*m .....

Each hospital has a PALS unit attacched to it ..they will help her "defend" herself ...and tell her about her rights .............Give the NHS service a ring for PALS number

AND DONT WORRY

So sorry, Sue that your daughter had to go through this,it is hard enough coping with the m s, my daughter has got it too, but she is a lot older than your girl,only told last year, stress seem to be a big factor in any flare ups, this man should be ashamed of himself, praying for your daughter and you also.

Jean x

It is possible to have more than one thing wrong with you.I would let them do the tests and find out for sure. I know some consultants do get abee in their bonnets, but a CT scan wont lie.. Jean

Sue, its bad the diagnosis was sent via letter.

I thought medical diagnosis and records etc were private, and sending by letter, anyone could have opened it.

It also gives more upset, being told of a diagnosis like that when the person may be alone and without support

{{{{HUGS}}}} to you both

There is always the possibility that she does not have MS and is suffering from something else. Why not let the consultants see it through.....?

Jean Monmouth,

Some symptoms of sarcoid sufferes can mimic MS, this is what I think is the basis for his letter, trying yet again to disprove her diagnosis.

I don't object to further investigation, and neither does daughter, it was the way the letter was phrased and why not call her in for a consult.

This consultant is located at her specialist neuro unit (small). He seems to be using her as his case study......she can do without the extra stress this sort of approach to further problems could cause.

Sue x

The diagnosis in a letter is wrong it hasnt given your daughter a chance to ask questions and have her mind put at rest about still further test that the Doctor would like to do ,.............

not at all a good way to continue relations with your already stressed daughter

I would tell him so ...by letter

Peter,

She absolutely has MS, we wish she didn't and have investigated the all mimicking illnesses but her neuro tests MRI scans and other tests left no doubt.So far it's one consultant against 5 others in total who have cared for her over the past. One of whom was (he is retired now) one of the most eminent MS experts.

Sue

I saw a Neurologist before my FM was diagnosed and he was horrible came at me with a needle without telling me what he was doing I just grabbed his arm to stop him.

Then told me I was just depressed and to get antidepressants.

They seem to think they have some special power and we are just mere numbers on his daily plan of action.

Hope your daughter can get to see someone else as you say Stress will not be good for her.

d xx

In order to confirm the diagnosis she would need a biopsy anyway! I'll speak with my GPs, who all know her with a view to complaining.

When she phoned this morning I told her not to worry and she said that she wouldn't but she doesn't have a partner and has to rely on her own mental strength to keep herself going.

Sue xx

((((((HUGs)))))))) for Just Jean and daughter

Thanks Dawnie x

Thanks Mildred x

Thanks Kemp x

aww sue ,sorry to here all this upset.hope you get it sorted soon.big hugsxxx

Thanks Joy,

I feel that her confidence is being undermined even more

Sue xx

A special thanks to the member who pm'd me with offers of support as a sufferer too.

Sue xx

Thanks Julia,

Hughes Syndrome was considered but ruled out 4 years ago when we asked if it could possibly be a mis-diagnosis. We asked even though we trust her initial diagnosis totally. Well you always live in hope!

This particular consultant just seems to have the worst 'bedside manner' I have ever come across :-(((

She will have the CT scan but I will still pursue the complaints procedure for the way he has handled her case.

Sue xx

Coming back to your complaint about the consultants attitude, there is no way you should let him get away with that, as he has probably been doing for years. A reasonable explanation is all you wanted and that is what you should have got. No matter how eminent in the profession they are they are still only people not gods and I do understand your anger. Jean

Caroline has just phoned. Her MS nurses called to see her today and confirmed that she does have MS and she does not have sarcoidosis! The CT scan was clear and they said the chest X ray was *cough* inaccurate!

I hope that idiot of a consultant can sleep at night.

She continues to be part of the MS trials and they explained they are investigating demographics, life style and physiology to gain more knowledge regarding those patients who have been diagnosed as long as she has and why some have so many relapses and some don't.

Just thought I would let you know.

Sue xx

thanks for letting us know Sue - just goes to show that learning and education, and qualifications ain't everything - what a pillock that man is - he needs to learn some bedside manners and etiquette before he shoots his mouth off in future

Ann XX

Thanks for the update Sue... pass my love and positive thoughts on to Caroline.... along with some ((((((((((((hugs)))))))))) for all of you.

Love

Daff xxx

lol Ann....... I thought that but didn't want to sound too rude, lol!

XXXXXXX

you know me Daff - just don't care!!!!