Help to obtain a diagnosis for my daughter and link to facial pain

Linda30

Hi, I'm new on this site. I'm mother of a 24 year old recently diagnosed with facial nerve pain (trigeminal neuralgia). During blood works for this condition we found she had a highly positive ANA with a titre of 640. We saw a rheumatologist last summer and had more blood tests which showed a negative anti-dsDNA, ENA screen (including anti Sm, U1-RNP, RNP70, Ro52, Ro (52 and 60kd), La, ScL-70,centromere and Jo-1 antibodies), ANCA and normal ALT. The rheumatologist didn't seem to think there was any other test, although I've read that a lot of these tests report as negative even when the patient has a certain condition. Are there any other tests we could request? Happy to pay for them privately. We have read lots of information, mainly from the USA Facial Pain Association and their Medical Board that Trigeminal Neuralgia can be caused by autoimmune conditions attacking the trigeminal nerve - particularly sjogrens, scleroderma, rheumatoid arthritis, lupus and mixed connective tissue disease. We really need to find out if she has any of these because we are considering microvascular decompression brain surgery for our daughter's trigeminal neuralgia and if an auto-immune condition has already damaged the trigeminal nerve this could make it worse. Hence our need for a clear diagnosis.  Thanks to everyone in advance.

HelenS

Hi @Linda30 , Welcome to the Online Community, hopefully you will find some answers here. Our members are very friendly & helpful.

Your daughter has recently been diagnosed with facial nerve pain and you are seeking more information, specifically in regard to other tests.

Unfortunately we are unable to comment with medical advice, and without a full diagnosis then it is very difficult to give specific advice.

The following link is to the Versus Arthritis information on RA

https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

You may also want to take a look at our information on Fibromyalgia, symptoms of which can cause nerve pain, and which can be extremely difficult to diagnose.

https://www.versusarthritis.org/about-arthritis/conditions/fibromyalgia/

https://www.versusarthritis.org/research/our-current-research/our-current-research-projects/fibromyalgia-developing-a-non-invasive-technique-to-diagnose-small-fibre-nerve-damage/

Please also do think about posting in our Living with arthritis discussion as some of our members may be able to give more detailed advice

Let us know how you get on.

Take care

Helen, Admin

Coopersmam

Hi Linda I have neck arthritis which has caused nerve compression in my spine. I got a diagnosis earlier this year but for two years prior to that I had facial pain only which the doctors said was trigermal neuralgia . I am wondering if your daughter has had any scans on her head neck and ears . Trigermal neuralgia can be a symptom of nerve damage anywhere on the head neck ears as it's all connected . It's worth checking it out before going down the route of major brain surgery

stickywicket

We never stop being mothers. My two are either side of 50 now and I still fret if things go wrong. I want them fixed. But some things are more fixable than others.

To be honest, I don't understand all your letters and numbers. I presume they all involve types of arthritis. But autoimmune forms of arthritis can be very imprecise. Some people go years without a definite label. Also, it seems a high positive ANA might not mean autoimmune at all. https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Antinuclear-Antibodies-ANA . As the NHS page on trigeminal neuralgia mentions MS as a possible cause, I wonder if you've looked into that?

Maybe you'd be best talking things over with someone who speaks medic. How did the rheumatologist interpret the results? Your GP might be good at de-jargoning everything. But that doesn't necessarily mean any neat, clear cut solutions.

I hope you can find a way through this.

Linda30

https://community.versusarthritis.org/discussion/comment/697459#Comment_697459

Thank you Coopersman, We have had two extensive head and neck MRIs. The UK radiologist reported 'nothing abnormal seen' but the US neurologist and a separate US TN neurosurgeon found her trigeminal nerve was being pushed by veins. This can happen in a lot of people without TN (hence the 'nothing abnormal seen' review) but where you have a sensitive nerve (possibly caused by an underline condition) this will be enough to cause the trigeminal nerve pain. I need to find out whether her likely autoimmune condition is just a separate coincidence or whether there is a connection. When I searched 'trigeminal neuralgia' on this site I've seen posts from people who do have this condition or other facial pain, so I feel there must be a connection. It's a total nightmare! Thanks for your thoughts.

Linda30

https://community.versusarthritis.org/discussion/comment/697471#Comment_697471

Thanks Stickywicket for your thoughts and the link. The letters and numbers refer to blood tests for specific antibodies that are seen in specific diseases. Because they came back negative the rheumatologist basically shrugged his shoulders. I think my daughter's ANA is significant because I read that 0.5% of people with a positive ANA at a titre of 1:640 are disease free and those are likely to be older, not 24 years old. That's fairly low odds and she has had three tests over a period of a year so it wasn't a blip caused by an infection and indeed her blood showed no sign of infection. Also the fact that she has trigeminal neuralgia which is extremely rare and is a symptom for the autoimmune conditions I listed in my original post - it unfortunately looks pretty conclusive. GP doesn't have an idea and doesn't even remember to book the regular blood tests required for the drugs she is on for her trigeminal neuralgia which led to her having abnormal sodium, liver function and low white blood count. Thanks for your concern and input.