Anyone diagnosed with trigeminal neuralgia before being diagnosed with an autoimmune condition?

[LouSkel]

My daughter was diagnosed with trigeminal neuralgia (TN) aged 22. At the time she had an ANA of 640:1 but no specific antibodies. I have heard from a USA neurologist that scleroderma, sjogrens, RA, MCTD and lupus can attack the trigeminal nerve in the face cause this trigeminal neuralgia pain - especially in young patients but there is not much talk of it in the UK. I wonder if anyone has heard of this link and whether it is possible to have the TN symptoms before any other autoimmune symptoms appear?

Thanks in advance.

[positivedaybyday]

Hi So sorry to hear of your daughters condition. It really is a dreadful disease!

My best friend in Australia had TN from the age of 40. It was always hard for me to see her in so much pain over the years.

She started with fits so I really believe something else was going on too. As she was adopted in the UK there was no background information to link any conditions.

I have Systemic Sclerosis (Scleroderma), diagnosed 2017. My uncle had Multiple Sclerosis & my aunt Rheumatoid Arthritis so autoimmune conditions run in the family.

I was told because I had SS non of my siblings would get this condition though it could be passed on in the next generation.

My older sister has recently been diagnosed with TN & is suffering shocking pain. She is at the start of her journey just having an MRI & various strengths of medication perscribed.

It would be worth talking to your speciast in the UK to see if any links have been found.

The research into SS is formidable & maybe this could be another avenue for them to explore if not already known about.

Autoimmune diseases are very complex as they are individual to each case in severity & symptoms.

The reason why a person is diagnosed is a mystery. I was told I was ANA positive & that many factors can trigger thus disease. Mine was a very bad virus at Xmas 2016 which I never recovered from.

I hope your daughter doesn't have an autoimmune disease diagnosed in the future. She has enough to deal with with TN alone.

A big hug from me to your daughter & all your family. To witness such pain is also very very hard. Xxx