I was wondering if anybody else experienced frustration and gaslighting along their diagnosis journey. After being bounced from specialist to specialist (cardiologist, pulmonologist, neurologist, gastroenterologist, dermatologist, endocrinologist, ENT) for each symptom and having each one tell me that my symptoms are autoimmune, my rheumatologist refuses to acknowledge that there is anything wrong. Seven years in the making, my symptoms / labs are:
*dime-size scalp inflammation spots that bleed and bald
*peeling skin on hands
*vibratory uticaria
*recurrent fever
*chronic fatigue
*post-exertional malaise
*chronic inflammatory damage to gallbladder, removed
*chronic inflammatory damage to abdominal lymph notes, removed
*butterfly rash
*red, flat, lacy rash on chest and upper thighs
*occasional loss of sensation in finger tips
*gastrointestinal upset
*vertigo / tinnitus / fluid in inner ear without infection
*occurring in very "flare" like patterns following stress or other triggers
*ANA positive (1:160 speckled)
*ENA positive
*dsDNA antibody positive (33 iu/ml)
*occasionally completely normal CBC, CMP, urine tests and GFR
*occasionally very bad CMC, CMP, and GFR
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Because my ENA was positive but with no association on the extractable nuclear AB panel and my sed rate, CBC, CMP, and C reactive protein are sometimes normal and sometimes not, she won't budge on that there's nothing wrong. In the meantime, I am living in a body that I hardly recognize that gives me a very low quality of life. Is this par for the course, should I get a second opinion, or am I truly barking up the wrong tree? Every time I go to a specialist and my PCP, they are always like, "is your rheumatologist treating you for lupus?" and appalled when I say no. I'm beyond frustrated at this point. Thanks for any insight that you can provide.
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AnxiousOwl4
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Oh AnxiousOwl4, how I feel your frustration - I was on a very similar journey for 20+ years & so my short answer to your question is, yes, get a second opinion if you can. Medicine is part science, part art. I’ve seen countless doctors in all sorts of specialties, all I can say is that each one puts the puzzle pieces together differently and comes up with a different picture. Some rely too heavily on lab results and like yours, mine can fluctuate from normal to deranged and back again and my symptoms wax and wane (and not always in concert with lab results) I’ve been sent down so many wrong paths it’s not funny. I’ve had to learn to become assertive because I’ve been dismissed so many times. I really hope you have the opportunity and means to get the perspective of another rheumatologist and I wish you all the very, very best x
Hi Anxious Owl. I think 90% of us here can identify and empathise with your journey. Sadly Rheumatologists on the whole seem to be wholly disinterested or rash in their diagnosis or lack of it. The majority of us have experienced some level of gaslighting, insults, dismissal, which frustrates and depresses. All we really want is validation that our bodies are hurting us but it seems the Fibromyalgia tag sticks and the reluctance to treat is soul destroying. I have not had two Rheumatologists agree on my diagnosis in 15 years, in fact they actively disagree. I had my first Lupus diagnosis in 2009, and now at least my current Rheumatologist is not discounting it but feels my primary diagnosis is Bechets.
My advice to you is to get a second opinion from a Rheumatologist not in your Health Board. If you can get to a Lupus Centre of Excellence so much the better. Also do not give up. You are sick and you need advice, support and effective treatment. You deserve that. This Community is always a safe and supportive place to vent, laugh and get advice. I hope things improve for you soon xx
You certainly have a lot of concerning symptoms. Your have clearly been tested for autoimmune disease and had positive tests. One thing that would be helpful is to hear what the autoimmune diagnoses of the other specialists was. Those could point the way.
Get a second opinion from an autoimmune specialist rheumatologist. Take your notes, diary and pictures. Don't wait as it sounds like you need the right meds and monitoring. Research the right rheumy and set it in motion today.
As it has been said before, most of us have been caught up in this merry go round. I thought I was going insane for 7 years, then I went private. My surgery nurse (not my GP - i've not seen them for 5 years), agreed to refer me to a neurologist. He was thorough, b7t dismissive and suggested I go see a rheumatologist. I eventually went to see Professor Francessco Del Galdo and he was a revelation! I cried when he told me I wasn't going insane and there was definitely something autoimmune immune going on. I'm 2 years in and things are still developing. First I was treated for UCTD with secondary Fybromyalgia, since then I have gone on to being diagnosed with Sjogrens Syndrome with secondary Fybromyalgia. I had SS all along, but I'd got used to so many of my symptoms, such as, sinus issues, dry throat, sore mouth etc., that I never really mentioned them to him. I went to see him about 3 months ago and just happened to mention that my eyes were sore, and that I was plagued with sinus issues that it all started to unravel... I still find myself not quite believing the diagnosis because so many medics have been so dismissive over the years and need to reassure myself it's real, so don't give up. Del Galdo told me that the nhs still find it hard to recognise these condition and thst many of us just get caught up in the system. I'm now on his NHS list so hopefully this won't happen again. Good luck and if you can afford to, do your research, find someone who specialises in autoimmune issues and go private. X
So sorry. I know the story all too well. My daughter fell ill at 7. She is 20 now and still not diagnosed. I had to fight to get her on steroids when she flares up. As a kid they told her it's all in her head and she developed mental illness which she finally overcame, when they started treating her with steroids for flare ups 8 years later. Still no confirmed diagnosis but her symptoms (confirmed by blood test results low Complement C4) - are similar to lupus / bechets. I expected a diagnosis of UCTD. She has a serious flare up every 7 years. The "lupus centre of excellence" said it can't be lupus if it's every 7 years with underlying inflammation in between. I contacted Johns Hopkins in America and they said some auto immune diseases like Churg's only flares up every few years so the UK is behind in terms of their thinking. Due to their ignorance however she had chronic inflammation in her tummy for 2 years (at first they refused to do an endoscopy and colonscopy when I asked) and her thyroid (same, they also refused) and her larynx is damaged. She couldn't breath (acute episode) and this could have been avoided with 3 weeks steroids and an injection into her larynx if that didn't work. They looked at her lungs instead. Medical ignorance and delayed diagnosis leads to damage. I did my research and told the "centre of excellence" to check her larynx while exercising to watch it's mobility (inflammation hampers muscle movement) and this is how GOSH (supposed to be one of the best in the world) and Alder Hey discovered that it damaged her larynx after all. She would need a stem cell transplant to fix the larynx damage (they offer it at Stockholm hospital - the only place that provides safe treatment). She was told it's in her head. I was told I'm overly anxious despite the confirmation of chronic inflammation in her larynx, thyroid, tummy, RA, hypermobility and all the usual rest. I am hoping that one day we will go to Johns Hopkins for a confirmed diagnosis. The quality of care in the UK sucks. I had to do all the work for Alder Hey and the supposedly world famous GOSH. I took my daughter private and they said they were simply "interested" to see what others said. They had no clue themselves either. I will keep the details of Professor Francessco Del Galdo that someone else mentions. Good luck to you. Keep doing research and pushing back. They spend £10000000 on an education and they are still ignorant.
oh how I feel you, and sorry to hear this, I am on the same journey that you are traveling and many before and with us, which is frustrating to say the least and quite traumatic at times. If you can, get another opinion from a specialist rheumatologist and I send my best wishes and hope you get the help needed that, many of us do not on these awful journeys. yes quality of life is deeply affected but here you will have the understanding to accompany you on your journey for which many of the medical 'proffessionals' seem to suffer gaslighting as a symptom of their own. You can also vent your frustration here! 🙏
Hope a second opinion will help you but so long as not linked to current rheumatologist x
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