Does anyone have any advice or personal experience with these three conditions?
I’m a 40 year old male whom has probably had temporal arteritis for a very long time (imho, since being a teenager), which has likely resulted in PR and likely led to TN. I have only recently seen a Neurologist and currently waiting for results of MRI tests but luckily I now have an active case manager to be my main advocate whom informed me about TA and PR two days ago and it is a logical diagnoses. So maybe now I will get all the relevant tests to help manage my symptoms and allow me to have some sort of normality, even if it’s just being able to go for a walk and to start working again.
Any advice would be helpful as I continue to try to find out what is actually happening within my body and to gain an actual diagnosis/es but unfortunately, it appears, my age and gender probably causes these diagnoses to be overlooked.
Thanks for reading,
Following. I have TN, and my sister was just diagnosed with polymyalgia rheumatica. She says I’m at risk for both TA and PR.
It’s good to hear you have a case manager, the whole process of obtaining a diagnosis, a true diagnosis, can be fraught with danger. Personally I have been given more pseudo diagnosis than I can count on my fingers (and toes), TN being one of them.
I’m in my mid 40’s and have been battling ‘odd pains’ since I was very young after being involved in a MVA. In my 20’s I underwent a few neurosurgeries and my continuing discomfort/pain has been labelled everything from idiopathic to psychological, from nerve pain to TN and damn near everything else in between.
I have been looking for some sort of firm diagnosis but short of a brain injury firstly from the MVA and then from the multiple surgeries, nobody has been able to actually give me that firm diagnosis.
Eventually I gave up on getting any straight answers from the doctors, they all seem to have their own opinions, and now simply manage the best way I can.
I hope you have better luck than I have.
Merl from the Moderator Support Team
Just an update if anyone is reading this topic at some point.
It currently appears more likely that my condition is TN with one of the 4 trigeminal autonomic cephalalgia headache conditions.