Vasculitis UK
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Waiting for Diagnosis Frustration

Hi

I finally got to see a rheumatologist a few weeks ago but was a bit unfortunate in that after a few bouts of being quite unwell I was actually in good form on the day. Sadly this meant that blood tests done on the day were normal except C reactive protein and drvvt. Since then however the near constant running nose, joint pain, odd muscle pain, arms feeling ice cold when warm and now a mixed white lumpy itchy + red pinprick rash have started to return. In fact I was screaming out in pain from spasms in my feet and started to be unable to walk without pain one day.

I’m frustrated because the letter to my GP missed significant points such as stating I didn’t have joint stiffness which is not true and in fact I explained it’s presence in my fingers.

What can I do to ensure I’m listened to - given I can’t help if on the day I wasn’t having a flare and yet now am having the beginnings of one (does not being able to hold a pen and write without pains in fingers and wrists count?)

I have been given the number of a nurse specialist but don’t know if to call her?

It’s frustrating as I want an accurate diagnosis so I can get on with my life but the consultant’s letter has left me feeling sad and not taken seriously just because on the day blood tests were ok.

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Hi Lavender-Flowers,

I understand your frustrations; I had the same problem in the USA with much downright wrong and misinformation in doctor's notes from my first rheumatologogy visit; I wrote a friendly, but firm letter noting all the things which were not correct, and asked that the errors be corrected. They were never corrected, nor was my letter responded to. I think that doctors in general are not good listeners, and discount things that are important to the patient.

This is a dangerous trend in medicine in general because records are often transmitted electronically for insurance purposes and to other providers and specialists you may need to see in the future, and the error will be repeated over and over again, and it will be up to you to correct it every time you see someone new if your GP does not correct the original paperwork.

As a result of my experience, I keep a daily journal with date and time, what activity I was involved with, etc. when a symptom is new, reoccuring, or persisting of what I am doing at the time, and bring it with me. (including diagrams). If I think something is very significant, I will give a copy of my own note and ask it to be included in chart.

Be that as it may, having a normal CRP does not exclude a diagnosis a rheumatological condition. All my labs were normal at my first visit except the presence of the antibody for granulomatous polyangetitis ( PR3.)

I would write to your GP pointing out what was missed in a polite way and copy in the rheumatologist ; e.g..." there must have been some misunderstandings or miscommunication because....."

I wouldn't think it would hurt to see the nurse specialist; perhaps she can set the record straight in writing and repeat the blood work. You can always demand a new rheumatologist later if you are not satisfied with the nurse-specialist.

Blood test results are not the whole story; they must be correlated. to physical exam, history and any other tests that may exist; having said that I know from physicians themselves who are open and chatty that even scans are also not correctly taken or interpreted. It's a sad thing that we must do so much monitoring of our own care, and work ourselves to get anywhere.

It also sounds like you will also need a dermatologist. Was there a suggestion to you that you have vasculitis or PMR, or other auto-immune disease? If you care to share...

Best Wishes and keep us in loop.

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Hi

Very kind of you to reply. I do have autoimmune B12 deficiency but because the blood test for Pernicious Anaemia is deeply flawed I can’t be diagnosed yet with it since I only had AGPC, which has apparently disappeared since 2016.

I was ANCA positive which was above normal in Nov but non specific, and various slightly abnormal RF, CRP, egfr, ESR, urea, and near upper limits of potassium. Apparently even presence of elevated ANCA wasn’t enough to cause concern despite my long list of symptoms including an episode of blue-black hands and boughts of fainting. It seems that because I wasn’t deeply sick on my visit I’m at risk of being dismissed out of hand yet having to wait 2 years for the referral.

I guess I feel vulnerable due to fact my diagnosis is entirely in the hands of doctors who don’t have time to take a careful look at results + symptoms. I’m asking myself ‘Do I really have to wait for something major to happen before something is done?’

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Hi L-F.

Sorry to hear of your troubles but I think our friend bluemoon offered sage advice about sending a friendly-in-tone follow-up letter to your gp with a cc to your rheumatologist.

I was fortunate to be diagnosed with near total kidney failure, by a nephrologist. She has been my single beacon of hope for the past five years. That aside, it took four years and five rheumatologist before I found my current doctor who actually hears me and who understand vasculitis.

Having experienced insurance coverage issues, I learned to provide my doctors with a list of ongoing health concerns.

Do your best to work through the discouraged feelings and move forward. Don't give up on being a good advocate for yourself! Be well.

Michele

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Michichgo and Lavender Flowers,

Self advocacy is essential; doctors are not gods and do not know everything. I feel very discouraged at times, and vulnerable when you have been waiting a long time for a consult and you get nothing when it arrives. We have the power of the internet to do our own research now; we must not think we are not on equal footing with someone who has MD. after their name.

At the same time, we must recognize that doctors are human , may seem indifferent, are sometimes dismissive, and that rheumatology is a tricky specialty where the pieces of the puzzle don't quite fit together easily and sometimes it takes time for a diagnosis to make itself clear; as hard as it is when you are tired, fatigued and down, keep fighting as long as you know something is wrong. Also important to remember that while vasculitis falls under the umbrella of rheumatology, many other specialists are involved with a systemic disease.

What I don't quite understand is why it would take 2 years for a referral. Is that a function of the UK health care system; your GP's office? in the States, sometimes there is a 4-6 week wait, but never 2 years.

If things go bad enough, you may need to go to the emergency dept. of your local hospital. We all just want to feel better and get back to a "normal" life.

Keep trying.

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2years? You may need to shout a bit to get earlier. You also need a consultant whom understands and is knowledgable regarding vasculitis. The vasculitis uk page has a helpline and they could help you find your nearest to be able to ask for the referral. My bloods are "remarkably unremarkable" but the diagnosis is still vasculitis. They have to look at the picture as a whole. The above idea of a diary notebook is a good one and I have a photo diary too on my phone, of rashes. Hope this moves forward for you but unfortunately just as we don't feel well, we sometimes have to find the strength to push things. 💐

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Thank you for such kind replies as they have helped pick my spirits up.

The 2 years wait was because of budget cuts in my area and the apparent placebo affect of seeing a physiotherapist. NHS in my area refers people to physiotherapists first so that waiting targets are met.

I was referred when I started complaining to my GP about pain when walking and joint pain. By the time I saw the physio I was having temporary paralysis in my toes and spasms. The physio referred me for spinal MRI which unsurprisingly to me didn’t show anything but he did suggest to my GP based on symptoms I be referred to hospital- a request that wasn’t taken up on. I trundled on with pain and all sorts of symptoms then joint pain started. First every few months and then more frequently.

I started getting severe confusion and headaches when out and about but struggled on until last year. I had had enough and the GP ran ANCA test which proved to be above normal range. Esr etc all come at above normal at times.

What surprises me is hospital consultant said blood ANCA wasn’t sufficiently bad enough and similarly with the other results. My jaw nearly dropped as I thought symptoms were important in addition to blood results. It felt as though I was being brushed off because I’m not unwell all the time, or at the time. I did explain that I can’t wait for another 2 years for a GP to be ‘kind’ enough to refer me again.

I guess I need to address some self esteem issues so that I can be a strong self advocate. And I do appreciate I’m not an M.D. and not an equal and am also beginning to learn rheumatology is not straight forward. I’m just very concerned that hospital doctors don’t realise that patients must almost get on their knees and beg for referral and write letters so that the patient referral board accepts GP’s recommendation for hospital referral. If I’m dismissed at the next hospital appointment I’m unlikely to get referred again unless an acute emergency occurs which in my experience with undiagnosed B12 deficiency left me in a far worse state of health. I’m wondering if I have to go out of my way to exacerbate my symptoms (going into crowds to make my eyes red and trigger a worse runny nose then lots of joint paint) and not take aspirin and other home remedies which ease things somewhat.

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I went thru the same crap with my rheumatologist- I had open ulcers etc. He didn’t listen to me when I told him I did not think it was hypersensitivity vasculitis because the symptoms lingered. Amazingly all my labs were normal so they were all puzzled. When I dropped my prednisone below 40 mg I would get more lesions. I lost cartilage in my nose & he diagnosed me with WEG. A year later at a checkup I still had healing ulcers, runny nose, muscle pain etc. He was so rude- told me I looked healthy & he had sicker patients than me! I got my GP to recommend another rheumatologist & I hit the jackpot!! He is wonderful! Hang in there & look for another doctor.

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