I tested positive on Anti-CCP and someone on staff at the blood lab indicated that I should look into: Temporal Arteritis / "Giant Cell". I am looking at that and Polymyalgia Rheumatica, which I see can be linked to the former. I think those conditions can, in some cases, be responsible for trigeminal pain - and I'm wondering whether anyone recognizes these diagnoses - or has either of them... ??? Just thought it was worth a shot.
Temporal Arteritis is a very rare condition that usually occurs in older women. It presents as a throbbing pain in one temple and can be diagnosed with an arterial biopsy. You need to see a rheumatologist, if you haven't already.
Well, I thought it was a stretch. I'm due to see the Rheumatologist in a month or so - will see what they have to say. Just wondering whether there's a connection at all between the positive Anti-CCP results and my 8-month streak of TN2 symptoms. Hmmmm. Maybe no relationship there at all. Thanks for your reply.
Please don’t dismiss the possibility of that diagnosis.
I have an elderly cousin with temporal artheritis, AND, a good friend whose sister has it and she is in her 50s. It’s a very serious condition, rare as it is.
This is not to scare you, just a friendly reminder to keep open. And as calm as you can. All of this stuff is eye-popping. It’s a stretch just to be posting here:)
Mom I was diagnosed with Temporal Arteritis within six weeks of being diagnosed with TN. My Rhuemy does not think there is a link but thought I may be mistaking one for the other. My Neuro thinks there is a link. I was not confusing one with the other as my blood levels were very high due to inflammation of the blood and the electric shooting pains were not due to TA but TN.
The happy news for me is that now the TA is under control with steroids I no longer have the shooting pains. I was left with a degree of TN2 or Neuropathy but even this is now minimum. I did not develop PR. Let me know how you get on. xx
PS I was only 52 when I developed TA, like TN it is more common in younger people then was first reported.
I just can't wait to have a better understanding of what's going on. My life has changed so much in less than a year and I'd really like to make sense of it all. "Striking Back" will be in my mailbox shortly - and I'll see the Rheumatologist soon to learn more about those blood lab results. Thank you so much for these replies. I'm so glad, Elstep, that your neuropathy is now down to a minimum - and that PR didn't become an issue - I've been reading about that. I do find it curious that the two diagnoses came so close to one another. Interesting.
Mom, i have just read another member also had bouts of TA, along with other autoimmune problems. Take a look at her page she is jujubeee . She has just had an op on her neck and so far no TN. jujubeee also believes that her TN like mine was linked to inflammation of an autoimmune problem. The hope there is if it is true, the TN will be helped by getting the Autoimmune problem under control.
Thank you, Elstep... I'm reading up on Jujubeee's conditions now... all helpful information, and certainly relevant!