Confused??

[sammie62king]

2 days ago

sammie62king

Hi I have been reading on here about people having to wait sometimes years to get a proper diagnosis for Ataxia. My friend's problem seems to be the opposite and I wondered if anyone else has had an initial diagnosis of some form of Ataxia and then told further down the line that they had not got Ataxia.

My friend went to The QMC in Nottingham last week after being referred by his doctor for a second opinion, as she thought nothing was being done for him after his spell in hospital last year and being diagnosed with Cerebellar Ataxia. He saw a Neurology expert who had quite an abrasive manner and was told he had not got Ataxia at all. He made this statement after just a few minutes check up and with just a minimum of notes from Sheffield. He followed this up with a letter to my friend and copies to his doctor and Professor at Sheffield, which to say the least was disgusting and totally insulting for my friend. He insinuated that my friend's condition was most likely due to anxiety and that he was probably faking his problems. This has really upset my friend and has probably set him back and knocked his confidence. We shall have to see what the Prof at Sheffield has to say, as he has an appointment with him in September. Has anyone else encountered this problem?

[HarryB Administrator]

Hi sammie62king

I am so sorry you friend is in this situation. It sounds dreadful for him.

I have heard plenty of stories where people have symptoms of ataxia and are told by the medics that 'it is all in your head', only to be diagnosed with ataxia down the line. I admit though I have never heard the story the other way around, as in your friend's case.

Unfortunately there are plenty of Consultant Neurologists who know little about the cerebellar ataxias. Prof Hadjivassilou at Sheffield is a Consultant Neurologist who specialises in ataxia. If he has assessed and diagnosed your friend with a cerebellar ataxia I have a very high degree of confidence that his assessment is correct. I urge your friend to keep the appointment in September when he will hopefully get some clarification.

I am not surprised he is very upset and this has knocked his confidence. Please re-assure him that this is not 'in his head', he is not faking anything and to hold out for the appointment in September.

Best wishes

Harriet

[sammie62king in reply to HarryB]

Thank you Harriet. I do agree with your comments and will let you know the outcome of the appointment in September.

[sheild in reply to HarryB]

Getting an accurate diagnosis can take years and years, I'm currently in about year 5... Because some conditions can't be picked up on an MRI or 'obvious' to the eye of a medic doesn't mean there is nothing real about the condition that your friend has.

I'm also seeing Prof H in Sheffield and he seems a very caring chap so well worth discussing further with him. The symptoms for ataxia and Mitochondrial disease overlap so this might be another area for investigation and this may take some time too.

I know ho wit feels to be dismissed as not having ataxia yet needing a wheelchair for no real clearly defined reason. there are medics who act in ignorance, it's happened to me too, but it's easier to dismiss a patient as not fitting their perception of a condition than it is to move the patient onto another expert. They're a funny lot at times, I know I married one...

[wobblybee]

😏Years ago I paid privately (I was desperate) to see a ENT Consultant. He cut the appointment short because I became extremely distressed when he performed the Epley Manouvre. In his opinion, I didn't have BPPV but was really just 'overwrought' and depressed etc. Previously a Neurologist had misdiagnosed me, leading to years of stress. And later another Neurologist fell below expectations, causing my GP to think I was just depressed.

Well, eventually I was diagnosed with Cerebellar Ataxia, and eventually it was proved I did have BPPV. It's vital to be referred to a Neurologist who specialises in ataxia, they are definitely not all able to differentiate or even recognise rare conditions.

It's now over 25yrs since the onset of disorientating symptoms, and although I've had lots of blood tests and subscribed to the Genome Project, the answer to the cause of the actual problem remains elusive. For several years I've had review appointments at an Ataxia Centre (Newcastle). Just last week, in relation to yet another blood test, I received an appointment at the Ataxia Centre in London🤔 Could things be reaching a conclusion🤔xB