To the 3 people that responded to my original post, thank you. The case review was at best a complete failure and waste of my time and gas money. Never mind the stress before, during, and after. I had emailed the 8 sets of lab work & tests including the two done last month. I called June 3 to ensure they were there. A nurse (?) said they were and she "was looking at them". On Monday, June 6 the "specialist" I had the appointment with, the head of the department with 38 (!) years experienced COULD NOT FIND THE LAB WORK. I sat in disbelief. I waited 4 months and drove 3 hours, one way, to this appointment. The gastroenterology, ENT, dermatology, retina specialist, lung MRIs, podiatry, cardiology reports I brought with me were casually thumbed through (not read, just glanced at). She handed the papers back to me, never copying them or even reading them. She said, " You have ANCA vasculitis and diffuse scleroderma. You need a sural nerve biopsy". That was it, no suggestions, no insights, she was a worthless time sucking doctor. I drove the 3 hours home just stopping once to cry. Then I got my act together and finished the drive home. Sural nerve biopsies are not recommended ncbi.nlm.nih.gov/pmc/articl.... I will never allow one to be performed on me. Never. I am completely lost. There is no medical help available for a patient with ANCA-associated vasculitis and diffuse scleroderma. Please, do not suggest another doctor. This major teaching hospital was considered the "best place for care" and that is the "care" I received: dismissive and incompetent. I am just going to live for as long as I can, the way I want to live. No more tests/biopsies/surgeries. I am done.
Case Review at Major Teaching Hospital Part 2 - Vasculitis UK
Case Review at Major Teaching Hospital Part 2
It sounds just like my hospital, after they failed to assess me and wouldn’t touch me because I had anca Vasculitis, I was so distressed I had a heart attack that same evening. Doctors who claim to be specialists are arrogant, ignorant and a waste of time, these so called doctors are a last hope for us and they so arrogant and so far up their own arse that they fail to treat and listen to a patient in distress or at last chance saloon, they make me so so angry. I feel for you my friend and I hope somewhere you find some help. It’s a joke!!!!
This was specialist #8, they all said they were not accredited to treat me. There are no more in my state. I'm done. Sorry to hear you went thru the same stuff.
It may simply be the luck of the draw. I saw almost 10 specialists before I was finally diagnosed. Only 1 of them was simply awful. The rest were at least good, and with 1 of them an absolute saint.
I went thru a dozen prior to diagnosis. I am looking for someone to TREAT. None there.
Sorry to hear that. I found that once the Dx was nailed down, treatment options opened up. They haven't been perfect, but it's a lot better than it was before. BTW, I have something other than ANCA. Our mileages may, correspondingly, vary.
I'm sorry I wasn't clear but I have diagnoses, repeated and confirmed by many, many, many tests. I have NO TREATMENT.
Really sorry to hear you had this experience. I find the ‘specialists’ to be so hit and miss. When I first got admitted to the high dependency unit with kidney failure I had the head of department overseeing my care. He understood the treatment and was on my bloods daily (usually two or three times a day). When I showed the slightest sign of improvement I was handed over to different ‘specialists’ who gave me conflicting information and told me I couldn’t have the treatment that the head of Dept said I could have. Thankfully I found another consultant but it was distressing to hear that I was going to switch treatment for no reason other than this consultant telling me she didn’t know why the head of Dept put me on that plan. She was so dismissive.
Im so sorry to hear what you are going through, its really not good enough. Does the hospital have a patient’s advocate that could plead your case for better care , they seem to dismiss you without even a treatment suggestion . Sending you lots of virtual hugs 🤗 🤗🤗
Thanks for the support but I am done searching/wasting my time for "treatment". It has been a many year battle, please see my other posts if you are interested in the boring details.
Don’t give up ! You mentioned rituximab in another post, is it a possibility for you ? I have had infusions for years ( Sjögren’s) with great success for me , i know its not for everybody.
All totally real life stories I can relate to because there are Doctors and Doctors and I am under the latter. Having said that in March 2020 just as the pandemic was gathering pace I was halfway though my 6 planned Cyclophosphamide infusions, doing really well and my consultant was on leave. A professor was standing in and told me I was in remission so she was taking me off Cyclophosphamide and putting me on Azathioprine, I argued that my consultant had repeatedly stated I must complete the course and asked her if this was because of the pandemic. She stated that it had nothing to do with the pandemic and my consultant had suggested this next phase. I couldn’t get on with Azathioprine and relapsed. I went to see my consultant and she was livid, the notes stated it was her stand in’s decision and it was because of Covid. This Professor had blatantly lied to me. Not only did it cause me to relapse, it has cost the NHS a lot more money as I had to have all sorts of consultations and tests and ended up on Rituximab which is more expensive.
3 weeks ago I was having my 6 monthly infusion and I saw her, this professor and I challenged her about it, talk about bull***t. I have never heard such utter crap. Her defence was “we have a duty to protect patients” my retort was from what? You lied to me” to which she disappeared. As I say Doctors and Doctors, she was the former.
I am sorry you had such and experience. I don't understand why they want to do a sural nerve biopsy, as far as I know that's done to confirm severe peripheral neuropathy. I know you can confirm vasculitis as well, but depending on the organs affected they usually do a skin, kidney or nose biopsy.
It is difficult for me to advice as our healthcare here in UK is so different.
Vasculitis can be a serious illness though so don't give up.
Hi Zoe, You say don't give up. There is no where else to go. I have severe peripheral nerve damage in both legs (I did mention I had a few goodies besides the ANCA and scleroderma, etc.). I had the ultra-painful electric nerve tests, 3 times. The poor doctor that did them said, "I am so sorry that I am torturing you. I'll be done soon." I don't need further diagnosis on that issue: I have severe peripheral neuropathy in both feet, ankles, and legs up to the knees.. A sural nerve biopsy was suggested for the vasculitis and she is VERY OUT DATED as you know. She never asked/mentioned/spoke of the neuropathy, the sural nerve biopsy was not mentioned for that. She said, "You need a sural nerve biopsy to confirm the vasculitis." I have had nose and multiple skin biopsies to confirm vasculitis. She not did she even look at the electric nerve study reports not the neurologist's nor the neurosurgeon reports. She, basically, was not interested in my case in the least. After reading the report on sural nerve studies, I'll allow them to do one when I am dead, not before. I was an annoying little fly that landed on "the specialist's" lunch. The entire effort to be seen at a major teaching hospital was a complete, frustrating waste of my time.
Hi Zoe, Just an update, the surgeon said he would absolutely NOT perform a sural nerve biopsy. He said the side effects are horrendous, lack of function in the foot below the biopsy, "phantom pain from the nerve being cut," some lovely things. He said he would not do it, there are more modern techniques and I have had them. He confirmed the diagnoses and said no further testing needs to be done for diagnostic purposes, especially a sural nerve biopsy. Thanks for the support. I am Moving on...
If diagnosis is firm, then they need to make a treatment plan for you! Best of luck on your journey!
I cannot believe you had to go through that! I'm sorry and angry on your behalf! These 'doctors' should be shamed publicly! Is there no channel you can use for this? On the other hand, you've already had to waste so much time, so maybe you're right to think about concentrating on yourself and your life. All the very best.
Irishponies: “I stopped to cry” and “I am done.” My own heart goes out to you. I’m American and my own story is long and layered. I had lupus since my teens or young adult but not diagnosed until 2016. I have many other AI diseases. Take a deep breath for as long as you need. Somehow,
Someway a new path will open. Best Regards, Titters
I’m so sorry to read this. I think a lot of us have placed high hopes on appointments that have then totally let us down. Please don’t give up on the treatment you have been offered. Remission is out there 🤗
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