nagative vasclitis

[tracey65]

just had my usual check up and my renal DR is saying he thinks my vascilitis is not active although im still fatigued and still suffering from all the joint pains and swelling,its possible i may have osteo in my knee ,all bloods are normal creatine 61,hb 12.1 wbc 12.1 esr 11 crp 26.5 pr3 negative.im now worried that when my dla is up for renewal in 3 months i may not get it due to his theory.i still feel awful and couldnt cope with going to work at all any advise please

[vivdunstan Volunteer]

Blood tests are not a definitive guide. Also a CRP of 26.5 sounds high to me. I'd ask for a second opinion. Speak to your GP about this.

[Mooka]

Hi Tracey

My renal doctor also told me that my vasculitis wasn't active as my blood tests were normal, even though I still had symptoms. I asked to be referred to Addenbrookes who confirmed that my vas was grumbling and therefore I was more likely to have a flare. Some hospitals like to treat the results not the person. I agree your crp sounds higher than it should be.

I hope you feel better soon.

Jackie

[tracey65]

thanks jackie what should normal crp be i dont have a clue

[John_Mills Volunteer]

There is not really a normal crp, everyone is different.... Some doctors rely too much on blood test results, as Vivienne and Jackie have already said. A good consultant will look at the whole picture and take into consideration all signs and symptoms of the disease plus how you are feeling too.

Maybe ask your GP for a referral as already suggested.

Susan

[miss-scarlett]

Hi Tracey and jackie

I am similar to you in that the renal doctor wrote to my gp saying that I had little symptoms and that the steroids and cyclo treatment had cleared it up as all my results were normal. The renal doctor never asked how i was he just went with the blood results. I don't know what the figures are as they don't tell me they just say they are ok. (Dla have written to my gp who doesn't know y symptoms or how I am feeling as I see the rheumatologist so I will be getting refused.)

Anyway to prove to them I still have problems with my ankles feet swelling and the rashes that come and go I have taken photos on my phone to show them.

I still suffer from joint pains and constantly being tired but they tell me it is side effects from the oral and I.v. steroids. I keep telling them I felt like that before treatment. That is why I have decided to take photos so they can see some symptoms so maybe if you or a family member has a phone with a camera take photos. My swelling goes down when I see the doctor so they don't see it.

Unfortunately I am not in a position to travel to another hospital. When I see the consultant again I will tell her everything as she is nice and listens.

Best wishes

Anita

[Albasain]

I agree with John in regards CRP. Miss-scarlet's suggestion of taking photos is also good and also keeping a diary in how you are affected on a day to day basis. These can be written up as a personal report into how you are coping or not with the disease and given as a copy to your consultant or GP. I did this with my leg ulcers and eventually created a fact sheet showing the progression of healing and what treatment were being applied, all in glorious colour! It is now being used in training junior doctors at my local hospital.

At present I am working with my Cardiologist in recording my BP on a daily basis ( I have Myocarditis) together with a report on activities during the day. We are trying to establish why my troponin levels are slightly elevated and also why my BP Is raised. It could be because of the steroids I take.

The consultants, Rheumatology, Cardiology, Neurology and Dermatology have all found that this approach to be very helpful to them in their diagnosis of this disease.

In regards DLA, vasculitis is recognised as a disabling condition. Because of this you should be entitled to some level of benefits as it can and does affect your work and social life. Again here observational reports as mentioned above go some way in helping benefit advisors arrive at their decision. That and letters from your consultants and GP.

[Sima1952 in reply to Albasain]

Hi Albasain,

With regards to your fact sheet, do you have a blank copy that you can send to me please. I started one using the calender format on Outlook but it's a little unwieldy and the one on Sweetsyndrome is good but there is nowhere to log unusual days.

Thks, Sally

[Albasain in reply to Sima1952]

I have left you a message.

Regards,

Albasain

[tracey65]

thankyou everyone for the advice i will act on all of the advice

[AndrewT]

Dear Tracy,

You say that your not having a 'flare', at least the 'blood test' says this, case in point; why vasculitis is so hard to diagnose! I just hope that 'they' now have your symptoms 'in hand', as it were. Sorry I can't be more helpful but stay well, so hope!, best wishes.

Andrew

[tracey65 in reply to AndrewT]

hi Andrew that is the case my sypmtoms are not in hand i just never seem to have a day where i feel normal any more even after all the treatments i had thanks

[AndrewT]

Sorry to hear this Tracy; my advice, for what it's worth that is, start to 'bang the drum' at your consultants/doctors and tell them what you have told us. It simply isn't good enough that you feel this way! I don't know how long you have been diagnosed for or indeed anything about you, or your case, but still! I personally feel quite angry at the way you have been treated, or not, as would seem to be the case!

Please do let me, us all, know how you get on will you?

Take care, as best you can

Andrew

[tracey65 in reply to AndrewT]

Thankyou andrew i will