Why symptoms we report to our rhumatologist or doctors ignored so often?

[Mumito66]

I have CSS which I have had for 17yrs, I feel despondent when I have been to a rhumatology appt because unless I delve for indepth answers (don't always feel able to do this) I am told 'everything is fine' and 'it's to be expected'

Aud :o)

[Hidden]

Simple solution? Change your consultant. If they don't provide what you need then find one that does. They're not able to know how we actually feel so we have to express 'how it is' but as a patient you have a right to be given a reasonable amount of information about your state of health.

Unfortunately there is a great deal of disparity within those professionals we encounter and vasculitis awareness and experience is frighteningly inadequate in some hospitals but is one of the areas V-UK is working hard to address.

Just remember that all medical staff have a duty of care to treat the patient rather than the disease!

If you need help finding someone more understanding & more knowledgeable then drop a line to John & Susan who I'm sure will be happy to advise who you might consider.

Healthy wishes.

[Mumito66]

Thanks for your suggetions, I'm hoping that my next visit will be better or I will ask to change consultants.

Aud :o)

[Ziggy]

I know what you mean, as they are limited with such a short time for you to tell them what has happened in the last 3-4 months, maybe a good idea which I do is write it down or print it out on an iPad so we cover what we need or even leave the typed out copy for them to read again once you have gone. I think this is why it is so important having and supporting this site, as there are people out there who can help you and suggest how to move forward.

[DevonLottie]

I have an excellent consultant who really listens, I also make sure I tell him EVERYTHING I've been feeling and leave it to him to decide whether it is relevant or not. Many of my aches and pains come from medication itself but he will tell me when that is so, but often he will contradict what I've been told by less well informed consultants who have ignored symptoms as they haven't come across them before. This is where it is important to be seen by very knowledgeable consultants so do get a list from VUK - it's you're right to choose who you are seen by.

[annie330]

I'm go in to my appointments and come away with more questions.

I have been told I have vasculitis, lupus and APS also insulin diabetic. The APS was only discovered whilst I had started cyclo then Rituximab for the vasculitis. At second to last appointment I asked if there were any issues with me seeking a referral to Dr Jayne at Cambridge (vasculitis specalist) and he said no that's fine glad of others opinions. But then last appointment I talker about insurance and disclosing conditions and he said that they have me as just having APS!

I don't get it