After months and months of testing, and doctoring, I have come full circle. A few years ago, before I ever heard of vasculitis or ANCAs, I was being treated for positional vertigo, and suffering from chronic headaches (plus my laundry list of symptoms, which I described in another post). At a physical therapy appointment, when doing a maneuver to reposition the crystals that float in your ear canals and cause vertigo, I winced in pain from the pressure applied to my temples. At the time my PT suggested I see my doctor. He didn’t want to frighten me; however, he told me to research Temporal Arteritis. Since then, I’ve had two brain MRIs, PET scan (head to toe), and temporal artery ultrasound, spinal puncture — all normal (though some Flares in white matter). Almost had a temporal artery biopsy, but the doctor changed his mind just prior to the procedure. His thinking was that I was young (56, at the time) and though my CRP was elevated, it was only mildly so. And my SedRate has been consistently normal. So here I am, still with tender and aching temples, with no definitive answer.
My question: If you’ve been diagnosed with Temporal Arteritis or Giant Cell Arteritis, can you please tell me your story?
Thank you!
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Canygirl61
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where you will probably get so many stories relating to your post you won't know where to start!
The international guidelines say "over 50" for GCA - and there are plenty of us over there who were in their early 50s when diagnosed. Up to 20% of patients with GCA (and PMR) never have markers that are raised above the normal range. And GCA doesn't HAVE to be in the bit of temporal artery they can look at.
Have you ever researched Menieur's disease of inner ear? I only know about it because my grandfather, a very stoic man, was having balance and ear symptoms. One time he collapsed when home alone, managed to crawl to phone to call nearby family doctor ,who in those days, made house calls, remembered to crawl to door to leave it open for doctor before he lost consciousness. It was Menieur's disease.
He recovered; not sure how it was treated. So it need not be arteritis; I have read that if you have been on prednisone for 2 weeks or more, it is already too late to get an accurate result from a temporal artery biopsy.
But, as you say, coming full circle, is very frustrating and defeating.
Thank you for responding. As my journey started with Vertigo and headaches, after seeing a neurologist, I was sent to the University of Pittsburgh, and had intensive testing of my vestibular system. I saw Dr. Joseph Furman, who is supposedly tops in the field. He ruled out Menieres, and diagnosed me with Migraine Associated Vertigo. He said my vestibular system and right ear were damaged— now, I suspect the damage was caused by autoimmune disease, not migraine. All this was before I had full diagnostic testing for autoimmune disease. Though, strangely, at the time, I did have an elevated CRP, with no explanation.
I do agree.
The problem I could see is that you started your treatment e.g. prednisolone, which may/could/might have possibly affected the test results, I wonder (?). I guess, in reality, this situation happens quite often. Relevant tests weren't given when someone did have active diseases and left in limbo, suffering. .. Then, by the time, doctors realise that you may have had the disease(s) for a while, people end up getting the tests, which should have been given promptly before the treatments began. Surprise, surprise, the diagnostic test results may not be so accurate after your treatments had begun.
I do get to hear that when LP comes back "normal", it crosses out CNS issues. I would be interested to hear from others in case this is not correct. Did you have LP before your treatment began? Why doctors/Neurologist do LP after you have been on treatment, I do not know. I wouldn't be surprised if LP may show a false neg once the patient is on treatments. Clean LP says "no disease" to doctors based on what I get to read or hear.
You also had PET (head to toe?) done. Who had ordered the whole body PET scan? Your doctor must have been extremely thorough. Is this also negative/normal? This probably excludes any sort of immune issues. The likely explanation is that your pred may have sorted things out. I don't know.
In September (2017) I did one week of prednisone (40mg taper) while concurrently starting, Plaquenil, which I took for one month. After feeling extremely nauseated and weak, with palpitations, my doctor stopped the Plaquenil. In November (2017) my internist, along with my pulmonologist, ordered the PET scan, which came back clear. I got a referral for a second opinion from a Vasculitis specialist in New York City, Dr. Robert Spiera (who ran clinical trials for Rituxin). He ordered the LP in January (2018), which was normal. Because I’m exhibiting multiple symptoms, and have elevated blood tests, many things have/had been suggested: Sjogrens, Undifferentiated Connective Tissue disease, and Limited Wegeners. All the practitioners agree that there’s something, but not sure what. So I’m living in limbo.
As anothermember and Caneygirl's stories and comments point out, the longer a patient with a auto immune disease has been taking prednisone and other anti-inflammatories, the less likely, he/she will be able to get a diagnosiis or an unambiguous diagnosis.
Scans are another problem; they are only as accurate as the technician is in positioning the pt. , and only as good as the person interpreting the scan; oftentimes, I see where the radiologist suggests that a CT may have been more helpful than an MRI, or vice versa and so it goes.
As long a way as medicine has come through the ages, there is still much unknown and remains ambiguous. I understand the physician's reasoning, start prednisone asap to arrest more damage and make the patient more comfortable, but that jeopardizes the chance for a precise diagnosis.
May I recommend a good read by a young American woman with Takayastu's Arteritis entitled " Sick and Tired of Being Sick and Tired." by Sheri Lyn Schwar.2006 The title says it all. Unfortunately, the book is not in ebook form, but is available in softcover from Amazon and other online sellers; maybe in the libraries.
It's hard to put down when, regardless of which type of vasculitis you have, you will really be able to relate to the emotional toll and confusion these diseases cause.
Another possibility is, "here, take this preonisolone, just get better quick", not a bad idea when someone's career, future is at stake. Once one's organ has been compromised, it is not going to be the same. If you were left with a disability without treatments, you wouldn't like it. Nobody would need to be in that situation, ideally.
You in particular will get a lot out of Sheri Lyn Schwaar's 2006 book "Vasculitis, Sick and Tired of Being Sick and Tired" ; symptoms start during her pregnancy at age 26. But much of the book would apply to anyone in this group.
I hate to say this, but over the US patients sites, It's just AI, not having any separate, individual AI groups. Patients do get AI labels, which can be different in 2 years time or worse, removed. Symptoms overlap, quite often. They say, over this forum, those imaging tests aren't showing Vasculitis. I wonder how often these imaging won't show Vasculitis. The lady, who is well known on this site, she commented her diagnosis was clinical. Even brain biopsy could come back false negative, as far as I remember. It's a tough disease to have! I have also known a lady diagnosed with GCA definitively based on the positive ultrasound, extremely specific to the condition. After 2-3 years, it was found to be a misdiagnosis. That was the assessment by the GCA expert. What does it tell you?
I don't even know why "temporal artery" could be the only artery affected by AI Vasculitis? Or is that just a name to denote "any Arteries" on the head? I just re-read the OT. That sounds like what I had, too. This must be fairly common, knowing how many of us had a similar scalp symptom in the forum.
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