Hi. I am wondering if anyone has been diagnosed with GCA with truly low ESR/CRP numbers? (tested three times over four months, ESR values 2, 2, 2 and CRP 1.0, 0.5, 0.9 mg/L). Also low LFTs (15,17) , low AlkPh (35), normal platelets (220). I see it's often mentioned that people have been diagnosed despite "normal" ESR and CRP, but those ranges are pretty wide, so "normal" is not necessarily low, especially if it's not known what the "normal" might have been for those patients before. From many published papers and case studies I've read, that discuss diagnosis with "normal" values, it seems that those values are never truly low, only within "normal" lab ranges. Westegren's original work actually had normal ESR for women at only 7 (and 3 for men), so anything above that would have been considered high. I ask this to help me decide if I should keep nagging my Dr. for a temporal artery ultrasound due to some symptoms I've experienced intermittently in the last few months. This group seems so knowledgeable.
Disclaimer - I do have severe health anxiety so I tend to overreact at times and have trouble letting go of fears, even when tests come back fine and doctors offer reassurance (for whatever ailments I might have thought I had in the past). Thank you.
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justagrl
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Hi. Five months ago, I started having some tightness/pressure, almost like muscle squeezing on the left broader temporalis area. It moved around, in the temple, over the brow bone, above the ear in the temporalis area. Occasional mild throb in some spots in that same broader area. Also mild pain over the TMJ in front of the ear, into my left cheekbone and sometimes upper molars, and above the left eye. Intermittent muscle twitching in the temple and temporalis area, usually triggered by chewing harder foods. My primary Dr. ran the first bloodwork in December at my request, and I did the other two blood draws on my own, over the following four months, out of fear of GCA. The temple sensations subsided since December, and became very intermittent. Last weekend, I had my hair colored and after having my head bent backwards over the sink for a while, while she scrubbed the color out, washed, repeated etc, and the next day and for the following 4-5 days, I had a very tight/strained SCM muscle and the sensations in my left temporalis area came back. Both my primary and my neurologist (chronic headaches/migraines) did not think GCA was a possibility. I saw a neuromuscular dentist/TMJD specialist, who said my symptoms were a typical presentation of TMJD. I saw an acupuncturist for evaluation, and he thought my tight SCM and trap muscle were the problem, as they refer symptoms into the temple and face. I will be starting acupuncture treatments next week.
On the face of it SCM and/or TMJ issues sound very likely. My GCA didn’t present like that though there are variations. I certainly have thought at times a chronically tight SCM was a GCA flare. A Bowen therapist sorted it out so that was my answer. May I ask what it is that makes you not reassured by what clinicians have said so far?
Thank you for replying and for mentioning Bowen therapy - I just did a quick Google search, I will definitely look into this more!
As to why I don't feel reassured - even with years of tension headaches and some migraines, I have never felt the one-sided sensations in my temple/temporalis before this started five months ago, so it's just unnerving I guess. The occasional mild throbbing scares me, and the twitching is particularly unnerving. Also, 24 years ago (at age 24), I had a major scare with my eyes, it was accidentally found that I had retinal tears in both eyes (unknown cause), which at that time meant a real threat of retinal detachment and blindness, as there was no successful treatment for detached retina at that time. I was treated with laser in both eyes, and that has been stable ever since, thankfully, and I have annual checkups for that. So anything that has a threat of losing eyesight triggers a lot of anxiety for me.
I guess the reality of actually getting someone to perform the procedures you want are slim because there have been no supporting opinions. So given that, for now why not try to sort out your neck issues with physical therapies of some sort and also being very aware of the stress positions you adopt on a daily basis, especially if you have ongoing worries. See how you go.
It would help to know what you do in your day and any ongoing issues you have. Don’t feel however, you have to plaster it on a forum whether anonymous or not. I can guarantee most of us have been through ‘some stuff’ and some in the health field when we were working.
Regards, the biopsy/ultrasound, they are not foolproof and a negative doesn’t mean there is no GCA in other cranial arteries. Mine was negative as were my inflammatory blood markers.
I have experience myself of having a life peppered with incidences of going to doctors and being fobbed off, only to have the true picture reveal itself some time later (sometimes years), some of it life threatening. I am the queen of the obscure early warning symptoms which can mean I have to wait longer than I’d like. It isn’t always the doctors but diagnostic procedures not yet being sensitive enough. However, as such I have had anxiety regards anything I feel so I go all out with getting my personal ‘housekeeping’ sorted physically and mentally if possible. I have been amazed at how much physical pain has been caused by the legacy of past trauma or emotional holding. At the very least it helps clear away the fog of symptoms an reveal what’s left.
Thanks again for your thoughtful response! Would you mind sharing what symptoms you had from the SCM, that were relieved with therapy? My left SCM feels really tight, and so does my left trapezius. I have acupuncture scheduled tomorrow.
pain up the side of my head, sore scalp, earache, vague general eye pain, pain in the occipital region on the affected side. There are probably more but I can’t remember.
I could never get on with acupuncture whenever I tried it for other issues but for some it’s great. If you find a ‘fix’ make sure you are mindful of what you are doing in between sessions and what emotional/physical trigger is causing your body to react. Check your pillow too.
Normal range for ESR starts at 1 and goes up to 20. That isn't values that are "normal" for an individual, they are values that are found in 95% of a large population, usually 10,000 or more. My ESR runs about 4 - and was once raised to 16-18 during a severe flare. My CRP was only out of range once - on a day when I had a severe arrythmia episode and they can cause raised CRP.
I think it would be a waste to demand an invasive test like a TAB which has potential adverse effects because of intermittent relatively minor symptoms unless it involved loss of vision. GCA would never be diagnosed on the basis of just ESR/CRP, other symptoms would be required as well and be more than intermittent. Once you have had a TAB then there is no option for that in the future if you were to develop symptoms that suggested GCA.
You don't tell us anything about yourself so it is difficult to make any assessment but I doubt a TAB would help you - particularly since they are not positive in more than about 40% of cases. There is a range of reasons for that including that section of artery not being affected, skip lesions so there are sections without the giant cells they are looking for, poor technique and some others. So it isn't a 100% certain answer anyway.
Hi and thank you for responding! Yes, I understand the lab ranges, what they represent, etc. I just noticed in all the case studies that I've read on Pubmed & Research Gate, the "normal" values were never truly low. I am just trying to decide my course of action, because my primary Dr. and my neurologist do not think anything further is necessary, with ESR/CRP values as very low as mine have been consistently for months, no significant headaches etc. I listed my symptoms in the response above.
I was not wanting to do the TAB, I was referring to the temporal Doppler ultrasound, as it is non-invasive, and from what I understand, fairly reliable? Thank you again for all the info.
I also had three comprehensive eye exams since December (the last one last week), two with a retina specialist, everything was fine, healthy optic nerves, blood vessels etc.
Sorry misread it - but while that isn't invasive, the other limitations apply and it is equal to the TAB, not really considered superior to it. It is also not universally available although it is possibly easier to access in the US than other countries - I assume you are in the USA?
But from what you describe you are not a typical GCA patient, including your age although age doesn't rule it out it is rare in under 50s.
The symptoms you describe after your hair appointment are not uncommon - there was a case some years ago that led to a recommendation that great care was required when back wash was being used as it can cause an interruption in the blood flow in the carotid artery if the neck is postioned in a particular way and it can cause a stroke. Your dentist is very likely correct - it does sound more like TMJ problems than GCA.
Yes, I am in the USA. Thank you for that information regarding hair washing, wow! I will have that in mind, especially since my hair colorist works at home and it's sort of a makeshift hair washing sink, not overly comfortable.
Another quick question, if you don't mind. As my biggest worry is vision issues (as I mentioned in my comment to Snazzy), my wonderful optometrist is willing to do the OCT test monthly, to ease my mind, as it is a cheap and quick test. Since OCT (Optical Coherence Tomography) is the test usually done as part of GCA workup, would this be a useful monitoring method to keep track of the eyes/optic nerve? Is monthly a reasonable time interval? Thanks!
I really don't know. As I understand it, it has been suggested relatively recently it may form the basis of AI screening for GCA but it has not been validated as far as I know.
Sorry to confuse you - I meant the OCT test of the eyes themselves, which is a common part of the comprehensive eye exam anyway. Shows images of the optic nerve, blood vessels etc, and measures the thickness of the cell layers that make up the optic nerves to check for optic nerve damage. I meant it as just a way to check on the health of the eyes/optic nerve on a regular basis. I just had it done last week at the optometrist.
It is one of the test used by the Bascom Palmer Eye Hospital here at the University of Miami in FL. If you scroll down to Tests at this link: umiamihealth.org/bascom-pal...
Hello. Do you already have a history of PMR? My GCA diagnosis, second bout in 6 years, is a bit confused with the possibility it could partly be Occipital Neuralgia caused by a neck problem. It got worse after a swim recently ( as yours did after the hairdressers). I googled the symptoms and it really can mimic some of the features of temporal arteritis. I already had PMR and was on steroids for that. ESR and CRP raised for me prior to PMR diagnosis but only just out of normal range. Magic effect from the steroids.
I've had PMR diagnosed since Jan. 2022 and 5 months of excrutiating pain prior to that which was diagnosed by my now-retired GP as "old age". In Jan 2023, had pains in jaws, back of neck, forehead and went to ER. After consulting with resident Rheumatologist on call, she thought possible GCA. CRP levels were elevated and at 25. They put me on 60 mg. Pred. I was at 14.5 and tapering. ER did a great work-up. Arranged a biopsy, ophthamologist, etc. Biopsy done Feb. 1/23 and was negative (which I still doubt to this day). No weakening of artery. Finally on Feb. 8, I got to see my unreachable Rheumy and she wanted me to start tapering at 5 mg. bi-weekly. The higher dose of Prednisone did help the pains in the head. When I started tapering to 55 mg. the pains returned. I upped it back to 60 mg. and pains subsided. When I do taper, the pains return for a bit. Sharp pain around the biopsy sight, pain along brow and forehead area. Neck pain on waking, Waking with almost-migraine headache. Then after about a week it goes away. So perhaps steroid withdrawl. I do have monthly fasting bloods done, but there is no follow-up from my Rheumatologist, so I don't know what the markers are as we speak.
On a long shot, I went to my dentist about 2 months ago, because I was still having jaw pain, not claudication. He diagnosed acute TMJD. I was fitted for a bite plane to help my jaws. It's about 50/50 whether or not it's working. I have great pressure in my head and on ears, which causes some deafness. An "underwater" feeling, only way more pressure. The jury is still out. He said the pain in the forehead and brow area is because this is where the jaw muscles attach. This makes sense. Ophthamologist says no sign of GCA.
I don't know if this information helps. I too have generalized anxiety disorder, as it particular relates to medical situations where I cannot get the help I need (i.e. my Rheumatologist, who has been pretty much useless). I have no GP now. This group has been phenomenal with their assistance, up-to-date information, kindness and patience with long posts such as mine.
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