Neurologist

[Dumpypug]

I'm seeing a neurologist today, am fully prepared to be fobbed off again.

Last time I saw him he said the majority of my health problems are because I have migrains, I most definately do not have migrains, I get a lot of headaches but they are only little niggly ones that are more of a pest than a pain, I couldnt seem to get him to listen and he refused to read my reports from St Thomas's.

If I dont get anywhere today I'm going to discharge myself from his department and look for another Dr, cant be doing with the ignorance and arrogance!!

x

[MandieR]

GOOD

PLEASED TO HEAR THAT

We all need to take control of our care. I too have been fobbed off, even sniggered at at times until I decided to take control back. My My you get treated differently then

Good Luck xx

[Purpletop]

But why are you seeing him in the first place, if you don't mind me asking?

[Dumpypug]

I'm seeing him because I was admitted to hospital last year with a possible tia. I say possible because the hospital I was admitted to did the wrong tests as they said I dont have any risk factors for stroke, even though ive lupus, hughes syndrome and lupus anticoagulant!! the only thing they did right was to refer me to a neurologist, I get a lot of headaches but they are just niggly ones and dont bother me that much really, prof D'Cruz wanted me to keep seeing him as I get a lot of dizzy spells, confusion and tingling down the left side of body, slurred speech etc, the worse my lupus is the worse my head is.

When I saw the neuro yesterday he said people with lupus dont suffer from headaches - which contradicts everything ive been told at St Thomas.

So frustrating

x

[rlupus]

Hi Ya not sure why you are being told lupus does not cause headaches thats rubbish i get migraines a lot and have lupus, and antiphoslipids , i have a lot of problems with my blood i have to have blood tests twice a week for life i have had 18 clots in legs, 4 in lungs, and my INR is never stable i take warfarin anything from 30mg to 50mg and still get clots, i am not able to work as i get dizzy spells and tingling to, i was first old it was my heart it took 7 years for me to be diagnosed , i am very lucky i have a fantastic GP and good consultants , but i must say it is a battle at first to get people to understand, some hospital just try to fob you off but please stand up for yourself and make them listen there is a lot of information on lupus uk . Just to add to the list i also have chronic obstrutive airways to , good luck take care.

[Dumpypug]

Hi rlupus

It sounds like youve really gone through the mill to say the least.

I did ask if the headaches were assosiated with APS and blood being too thick and he said no!

So frustrating, I wont be seeing him again. I've decided only to see the DRs at St Thomas and unless they refer me to a specialist that they know I wont be seeing anyone else. Sometimes think I'm betrer on my own than seeing these Drs.

Its so frustrating and what they are doing is actually quite dangerous, how they get away with I really dont know!

Anyway onwards and upwards!

x

[Nightjar]

Hi D.., How painful it is to hear the same story, over and over, from so many lupies! PALS would have info on how to go about a complaints procedure. Too many lupies are being 'fobbed off' ..too many times! I hope you find a consultant who is knowledge about lupus ..and not least has some understanding of what it is like 'living with lupus' - Good luck! xxx