fed up with stupid consultants

[tracey65]

i dont know why i bother going for my regular check up at the renal clinic,its the same old thing .bloods are looking great,mmm realy so why do i feel like crap,tired aches pains,headache.to be told i dont think its your wg,as its under control.i just want to give up going to these pointless appointments.grrrr

[John_Mills Volunteer]

I am afraid it is a sad fact that some patients with Vasculitis are not being listened to by their GP's or Consultants. John and I hear this to often.

We believe that all people with Vasculitis should know as much about their type of Vasculitis as the Consultants do. Maybe a pdf copy of the Route Map for Vasculitis may help you with not only understanding about the disease itself but will help you manage the Vasculitis and maybe you might be able to share some of the information with your consultant too.

It is difficult to be assertive at these appointments but if you are feeling like Cr**p then the doctor/consultant should know and at least try and make your life a little more comfortable.

Blood tests alone do not tell the consultant that the patient with Vasculitis is "fine", they should take into consideration how the patient is in themselves and how they are feeling physically. A really good consultant who specialises in Vasculitis will listen to what the patient has to say.

If you would like a pdf download of the Route Map I am sure Patricia (the Route Map Editor) will let you have a copy. I know there is going to be a launch of the RM at the AGM in 2 weeks so it will be available for release any day now.

Just take care and don't give up going to your appointments what ever you do.

Susan

[tracey65 in reply to John_Mills]

hi susan yes please i would like to have a copy of the route map.occasionaly i see dr flossman who does understand,but dont always get to see him.thank you

[John_Mills Volunteer in reply to tracey65]

if you send me your email address I can ask Pat to send you a pdf copy and if you send me your home address I will send you some info leaflets that might help.

Susan

[tracey65 in reply to John_Mills]

[e-mail].i already have leaflets thankyou

[Hidden]

Please remember that 'doctor knows best' isn't necessarily true. If your consultant doesn't listen or heed your feelings then change to one that does. John and Susan can provide details of specialists with a greater degree of understanding if required and as Susan says, please don't give up!

[Jann]

What was my consultant asked is how do you feel. He feels that the blood test are only and indicator it is how you feel that is the best tell with WG. I think it is time to see someone else as well.

Giving up is not the answer even through it feels like a short term solution.

[patsy]

I know how you feel, but I believe they are as fed up as we are, I went on Tuesday to see my consultant, and like you everything is the same so keep taking the medication. Frustration creeps in and you want to scream when they tell you yout anca is still active and you could relapse!! well give me something to stop the relapse them!! you want to yell!!!! Ofcourse they cant but hell what is it with this bloody disease?

[tracey65]

thanks guys at least you all understand.i have thought about seeing different specialists but would have to travel miles there doesnt seem to be much in my area of berkshire.

[HiveMind in reply to tracey65]

Hi Tracey,

Not sure if this will help or not but I live in Berkshire and I see Dr. Luqmani and his team at the Nuffield Orthopaedic Centre in Oxford. I got my GP to refer me to him after I found out (I did the detective work myself as I was SO desperate to be treated properly) he was a Vasculitic Specialist. I live an equal distance between Reading and the Oxford hospital, so the travel is not an issue for me.

Even if it was a longer journey, I think the better standard of care with a specialist would warrant the effort.

Please contact me if you need any further info.

Elaine

[tracey65 in reply to HiveMind]

hi thank you,yes i have been to see him at oxford and he seems to think i was in remission even tho i didnt feel as tho i was myself.Tracey

[Tony-LakeDistrict]

Hi , I felt like you for a long time, then I realized that the banal conversation I was having with my specialist, Dr Gibson, was his way of seeing how I was dealing with everyday life, a lot more encompassing, than "how are you feeling". Perhaps I`m lucky with Dr Gibson, but I have met a couple of other specialists, who also seem to have the same approach.,Tired aches pains,headache etc, they are normal for this disease.But life does get better, I promise.

I hope sad films will make you cry & silliness will make you laugh

I hope life turns around for you soon.

Tony

[tracey65 in reply to Tony-LakeDistrict]

sad films do make me cry and yes silliness makes me laugh,thankyou

[JacquiM Volunteer]

Hi Tracey

I'm so glad it is not only me that has trouble making my consultants understand how I am feeling at times. Having read lots about WG, people's comments and advice on here and the FB page I challenged the consultants I see and they did admit that they had failed to communicate with each other and have been focussing only on my kidney failure.

The problem comes, I feel, when I don't get to see the same consultant every time I go. I have now also been referred to Rheumatology and will be managed by both departments, which I feel should have been done at an ealier stage.

Don't give up going to your appointments Tracey, just arm yourself with as much information as you can, challenge them and ask you GP to refer you to another hospital or consultant if you are not happy.

My consultants now know that I have a some awareness about Vasculitis and am not going to go quietly!!!

Good luck and keep fighting sweetheart

Jacqui x

[tracey65 in reply to JacquiM]

thank you

[PoppyS]

I kept telling my first consultant I didn't feel well and he kept reducing medication and it was only since changing to Cambridge that I discovered that my blood tests weren't "good" and every time he reduced medication it ANCA levels increased but he still kept reducing it. After a bad flare I changed and pleased I did as feel so much better with the help of the Vasculitis Group and the Cambridge Doctors. I travel 100 miles and it is well worth it.

[tracey65 in reply to PoppyS]

think i will seriously consider this thankyou

[mags1701]

I wonder if the doctors just don't have any answers to symptoms such as fatigue and aches and pains. They have done so much for us in stopping kidney failure etc. and they are as 'flummoxed' as we are.. I have osteopenia and have had very painful backache and stiffness but am told it is my age[77], though I think it is a result of taking prednisolone for WG, from what I have read. However, I was 'saved' in the nick of time and don't have to have dialysis, so on the whole I am just very grateful and search out my own way through it.

[tracey65 in reply to mags1701]

yes your right ,but sometimes you just get that feeling its all in your head and no one believes how you are feeling

[Ezrela in reply to tracey65]

Yes your right Tracey 65, my doctor has made me feel as though I am a hypocondriate, says she thinks theres nothing wrong until there tests prove different, I was treated with vasculitus 3 years back. They just dont listen.

[Ezrela]

I just so sympathise with you, I have just come from my GP today, I am having a flare just as I did 3 years back my legs are swollen and itchy I have a severe headache I feel as though I have flu, and my new GP wont listen to me, I have asked to be referred to Addenbrooks for an assessment but they wont let me, I went to Barts earlier this year, he never did a solitary test and turned me down and said he didnt think I had Vasculitus, I was previously 3 years ago told I had it by my GP and also Rhumatologist, now they are saying I have not got this. I am waiting for a special blood test to come back from London but my GP wont listen to me, they keep saying I should be okay when I feel so very ill, the pain in my legs are agonising and I cant touch them, and my headache wont go and I feel like I have flu coming,. he did say they have to have a meeting to see if they will let me be referred but said I think its quite unlikely, we can only find a bit of atheritus in the blood until further tests come back, my liver function is abnormal and they have to retest me and a possible liver scan, but she says, you havent got anything wrong with you.

Yes I agree, why do we bother with these stupid doctors, they dont seem to know their job these days, you could be dying and they say there is nothing wrong with you, either they dont know what their doing, or it is simply just a matter of money with them. I know what your going through.

[tracey65]

so sorry to hear this ,my GP is understanding so im luck there.its your right now a days to be referred to where you want to.have you spoke to susan and jon mills about this they are very clued up and may be able to advise you more.hope you feel better soon.good luck

[MiaTilehurst]

I too live in Berkshire and am also battling with the lack of understanding of some consultants at my local hospital. I look well therefore I must be well is the mantra of one. I have asked to be seen by the same consultant each time I visit in order to provide continuity of care. This is the challenge that I have set the department.

[tracey65]

hello where do you live and what hospital do you attend.i live in bracknell.yes this is so annoying not seeing the same consultant which would make our lifes a lot easier for them and us

[MiaTilehurst in reply to tracey65]

Hi Tracey65

I live in Reading and am cared for at the RBH in the Rheumatology Department by a succession of different consultants. I do also attend a private clinic in London where I see a Dr D'Cruz - he is conducting research into Vasculitis and is therefore interested to follow my progress. From him I have learnt a great deal about my condition and use this knowledge to challenge poor advice from some local consultants. I do think that care from a specialist center is advisable when you have a rare condition. London and Oxford are easier to get to than Cambridge. Maybe we can 'educate' the RBH to provide better care for their Vasculitic patients. Good luck.

MiaTilehurst

[CCSP-27 in reply to MiaTilehurst]

Hello Mia

I realise this is an old posting and I'm new to HU but I'm very interested in your Dr D'Cruz or anyone for that matter who's a Vasculitis expert !

Mine Vas is probably although by no means conclusively a pacns vas or CNSvas ??

I need to be tested more but don't know what to ask for before I agree to have more drugs thrown at me.

I'm already on 3 Aed's for Seizures which one Neuro doesn't think were Seziures at all !!

Confusing !

Susan

[MiaTilehurst in reply to CCSP-27]

Hi Susan-Mac

I see D'Cruz (now a professor) at the London Lupus and Rheumatology Centre, London Bridge Hospital, St Olaf House, 27 Tooley Street London, SE1 2PR

Tel: [phone]. He also works at St Thomas in the NHS.

I am not aware of any Vasculitis expert that specialises in CNSV - we are too few. Other Vasculitis experts I have come across are Dr Jayne, Cambridge and Professor Luqmani at Oxford. Perhaps John Mills At VUK can provide more information based on your geographical area.

Prof D'Cruz is a kind, caring doctor who has always listened to me. He does not just look at blood tests but has a series of cognitive tests that he goes through at each appointment.

No two patients with CNSV will have the same symptoms. Depending on which areas of the brain have been damaged we can experience different symptoms Making diagnosis difficult.

I hope that you are getting support from family and friends on this journey. It is difficult for people to realise how poorly you might be feeling because you look so 'normal'

Mia

[CCSP-27 in reply to MiaTilehurst]

Thank you so much Mia

It's great to feel empowered! Specific info as to where I might be able to find the right clinician is a great help.

I'll work on getting a ref and also contact John Mills - he might know of a professional

closer to home (although a lot of me doubts it given the smaller population) possibly even Dublin - a drive is better than a flight considering I'm not supposed to fly yet after the brain biopsy !

Yes I too look normal and "so well groomed and just great" !!!

Folk mean well I guess and we can't expect them

to understand complex Neuro problems.

My cognitive skills last about an hour a day sometimes two, I'm physically very weak, sleeping (not always restfully) a ridiculous amount of hours and generally feel I'm about 50% of my real self !

Recognise any of this !!

I'm a ballet teacher Mia so you can imagine how devastated I am unable to do my

much loved work

- I've been teaching now 38years nearly 200 students and I'm loathe to give up just yet - have to make it to 40 years - an excuse for a party !!! I'm self employed with no 'sickness benefits' available to me .....but that's a whole other story !

Btw I'm trying to keep emotionally well with meditation and mindfulness - with practice it does work ! Just an idea for you

Thank you again

Susan

[MiaTilehurst in reply to CCSP-27]

Stay positive, things will improve once you are on the right medications. Sleeping lots and mental confusion are definitely things I remember. It became so bad that I couldn't read a book, follow instructions or carry out a series of simple tasks. Now that is behind me and I am reasonably stable with the occasional flare.

I am assuming that you are in NI. I have seen details of an Irish Vasculitis organisation on HU. john Mills should be able to help you with details of Vasculitis experts in Ireland.

I was forced to give up work during the 8 years without a diagnosis. No support available when my GP considered I was just a hypochondriac!

Take one step at a time and don't look too far into the future. I am assuming that the brain biopsy gave a definite diagnosis - false negatives are not uncommon. Now you need the right medications. This condition is treated aggressively because of the huge potential damage of stroke, blindness etc if not well controlled.

When I was diagnosed VUK was in its infancy. I found lots of good information on The John Hopkins Hospital website and the Mayo Clinic website both renowned teaching hospitals in the U.S. Arm yourself with as much information about your condition as you can - but be selective on what you read on the Internet. Knowledge is power and it will make you the best advocate for your care.

Mia

[Pollyrose]

Hi both Tracey 65 and MiaTilehurst

I too am from the Reading area and so I think we must all be going to the same hospital and getting the same answers. I have been referred to Oxford which initially went very well but then was told (by Oxford) that Reading was the best place for the test I needed on my kidneys - that was 3 months ago and I am still waiting. I am attending the AGM on Sunday to gain a better understanding of everything and am seriously considering being referred to Birmingham or Cambridge - anything to feel well again. Good luck to you both

[John_Mills Volunteer in reply to Pollyrose]

Just checking to see how things are now Pollyrose?

[tracey65]

aww good luck,i wanted to go to the agm but its a bit far

[HiveMind]

To all of you in Berkshire (and beyond!).

I too was being treated at the RBH in Reading and every time I was unwell they put up my Prednisilone AGAIN. That was their answer to everything really. I believe they were treating me by "the book", in other words they didn't have a " Scooby".

I knew I wasn't getting the right treatment (call it intuition) so after a couple of years I decided to take matters into my own hands. If I've learnt anything in the 4 years since diagnosis it's that you HAVE to be responsible for your own health. I tracked down Professor Luqmani (Vasculitis Specialist) on the internet and emailed him. Within 2 weeks I was sat in front of him.

I guess what I'm trying to say is, you don't have to put up with doctors who don't know you, your illness or what treatment you need.

Having been through what I've been through (and continue to go through) If I can help any of you or give you info, just feel free to contact me on here and I'll try my very best to do so.

(btw, I have Churg-Strauss)

Stay well. X

[JontyW in reply to HiveMind]

Hello BerkshireBird

I realise this is an old posting, but I would be interested to know how the consultant at Oxford treated you differently to your previous consultant.

So what action(s) did he take rather than increasing thee Pred level again?

Many thanks ... JontyW

[HiveMind in reply to JontyW]

My Oxford consultant actually listened to me, instead of talking "at" me. He questioned how I felt and altogether made me feel that I was in safe hands. In other words he knew what he was talking about because his knowledge was rooted in experience.

Any new symptoms were taken into consideration and acted upon. His manner was caring and sympathetic. Totally unlike the previous Dr.

[JontyW in reply to HiveMind]

I understand all that and that is exactly how my rheumatologist treats me,....

You previously said ..

"I too was being treated at the RBH in Reading and every time I was unwell they put up my Prednisilone AGAIN. That was their answer to everything really."

But being a scientist and also a CSS sufferer, I would really like to know the answer to my original question ..

Your new consultantant at Oxford .. "Any new symptoms were taken into consideration and acted upon."

"So what action(s) did he take rather than increasing the Pred level again? " Can you give an example, because in the end all we can do is take the recommended medication etc .. or am I missing something here? If a consultant doesn't appear to be listening, I will tell them in clear unambiguous terminology exactly what my problems are and expect actions that seem to make sense ...

Jonty

[John_Mills Volunteer]

Good for you Berkshire Bird.

" A patient who is fully informed and educated about their problem becomes empowered to take control of their illness". I wrote that about 3 hrs ago as part of the Vasculitis UK's submission to the Government's consultation on the "Strategy for Rare Diseases". The more the patients know, the more the doctors will need to know to keep up with them! It's known as the "bottom up" approach.

John