I wrote here about a month ago but unfortunately am still experiencing symptoms without any official diagnosis. I've been to the Emergency Room, a Primary Care Doctor, and was then referred to a Neurologist. All 3 of them dismissed the possibility of Temporal Arteritis/Giant Cell Arteritis and said no further testing is merited. I am only 35 and the ER doctor actually told me it was impossible to have at this age, which I know from my own research is not true.
I have constant pressure-like pain in both temples along with visibly engorged temporal arteries (you can actually see the veins bulging in my head -- something I never noticed before this all happened, but to be fair maybe it's possible I am just focusing on them now?). However, I do have very STRONG pulse in both arteries - in fact it almost seems like too much of a pulse. I have read that GCA usually presents little or no pulse in the temporal arteries - would a strong pulse rule out GCA in my case?
I also have had a lower stiff back and some stiffness between my shoulders which I learned are possible symptoms of PMR, which often occurs in tandem with GCA.
Questions:
1) Can GCA/PMR be triggered by a particular event? In my case, this all started after a first-time visit to a Chiropractor. The Chiro had hit my neck very hard with a device, and in the following days I developed headaches and numbness/tingling around my head (Thankfully, the numbness has since subsided - but the pressure in temporal area remains). I was also very stressed/anxious in the months leading up to this. In fact, the reason I went to a Chiro was to see if he could help with the severe Tinnitus that I recently developed. I was in a chronic state of stress due to this and another unrelated health condition that I had even before the Tinnitus. My year has not been great at all, to say the least.
2) Are there any natural ways to clear this condition? Natural anti-inflammatory substances like high doses of Curcumin or something else? Even with a proper diagnosis I am very skeptical of taking Steroids as I have not reacted to them well in the past, along with the fact that I already have severe Tinnitus due to another medication side effect incident, and do not want to risk worsening it any further.
3) Are there any other ways to confirm if this is truly a case GCA and/or PMR? I have already had blood work done and my ESR and CRP are normal, but I know this is not a true indicator. I read some studies about using Ultrasound on the temporal arteries. Would the be the best way to get an official diagnosis (assuming I can get a doctor to order the test)?
4) Anyone here familiar with MTHFR gene mutation and have made a link to GCA/PMR? I recently learned that I am Compound Heterozygous which means I am a poor Methylator and have increased risk for all sorts of health conditions. I also have relatively high Homocysteine levels.
Thank you
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HealMe1111
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I remember your original post and am so sorry that you are still having problems. I can only comment on several of your questions. PMR /GCA can certainly be brought about by stress which you have mentioned and, I believe, by trauma, e.g. a blow to the head or neck (chiropractor) although this could have other implications. An ultrasound scan would confirm whether or not you have temporal arteritis and an MRI with contrast would give a more accurate reading although I see you have concerns about a dye. Regarding tinnitus, I would try to see a practitioner specialising in this as it needs further investigation. Your other conditions are unknown to me but others may be able to help.
Thanks for the response. I was actually offered to undergo an MRI/MRA but unfortunately due to my other condition (Tinnitus) I am very reluctant to go through with it for 2 reasons: 1) MRI can cause or worsen Tinnitus and/or Hyperacusis due to the loud noises even with proper hearing protection and 2) Concerns with Galodlinium Dye (I have an issue with nearly all oral medications now, so injecting something does not appeal to be in the slightest -- I strongly believe it's due to my MTHFR status and impaired detox pathways).
I'm really in a bind because of this combination. One condition on its own is enough to deal with , but 2 is almost unbearable, especially at my young age (still unmarried, have a lot of life goals, etc.) Strange thing is I was relatively healthy before all of these things hit me this year.
After I declined the MRI, I suggested Ultrasound imaging as a safer alternative and they did order a Carotid Ultrasound. The results came back as normal -- even though there was slightly less flow in my Left Carotid (the same side the Chiropractor hit me in with enough force that my neck was sore for the rest of the evening). However for some reason they would not order a Temporal Artery Ultrasound, which is really what I need - they just said they don't believe I have TA and no further testing would be ordered. They literally said "good luck" in the last message I received.
It's really surprising that our healthcare system treats people like this when they are obviously suffering. I am now considering contacting the Cleveland Clinic which is about 3 hours from me. I hear they are more apt in treating rare or unusual conditions.
A strong pulse in the temporal arteries is usually regarded as making a diagnosis of GCA extremely unlikely. 80% of patients have raised ESR/CRP and it is very unusual for someone of your age to have GCA. While PMR can be part of GCA in some patients what you describe isn't typical of PMR - there is far more to it than that! All in all, I suspect that a rheumatologist would consider you have a very low indication for GCA.
I think we suggested that the episode with the chiropractor may have led to at least some of your problems - but it is unlikely to have caused or triggered the autoimmune disorder underlying GCA. There is an ultrasound technique - but it isn't available everywhere. There is no alternative to steroids as first line management of GCA - although a biologic is now available and used first line in the USA.
I'm sorry - but you can ask the same question here repeatedly and you will get the same answers from us. Unless you can find a doctor who will do further investigations we can do nothing to help you in terms of a diagnosis, facts don't change and we have tried to help on the basis of the information you have.
There is, by the way, no CURE for GCA. Corticosteroids manage the inflammation until the underlying autoimmune disorder than causes it burns out and goes into remission. The biologic has a direct effect on one of the mechanisms creating the inflammatory substance and appears to stop it for at least some people for some time. The long term effect isn't clear yet though as it is a relatively new treatment.
Thanks for the insight - it's quite possible I don't have GCA, I just don't know what other condition would cause the symptoms I experience. Honestly, the diagnosis doesn't mean much to me anyway - the most important thing is getting the issue resolved, whatever it is. I feel like I am running out of options with Doctors and may have to try to resolve this on my own through diet and supplements. If it is autoimmune or inflammation related, I suppose there is a possibility of it going into remission if I correct the underlying issues in my body. Wish me luck.
One doctor in his book Bad Medicine did say never let a chiropractor work on your neck only on your back, as some not so well trained ones can cause nasty problems.
Also, you mentioned that you are sometimes in a constant state of stress. It is pretty well documented that heightened stress and anxiety cause inflammation which is responsible for making any disease much worse.
If I were in your position I would work on the stress part first, see if you can get some of the inflammation under control.
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