Finally done with tests

General General TN & GPN (Old Site)
1

My problems started last November, and finally today I got a verdict, after living in agony, visiting numerous doctors, countless blood tests, an MRI with and without contrast, followed by a lumbar puncture.

My diagnosis was Tolosa Hunt Syndrome, which is causing my TN as a side effect.

I'm 28 years old, this started when I was 27. It's the most miserable pain imagineable(yea I know everyone here is in miserable pain)

I'm actually really lucky I didn't lose my eyesight, that's usually a distinguishing sign of tolosa hunt syndrome, and I have the worst eye pain that has been getting worse and worse.

So now I take Prednisone (steroid) and gabapentin (for TN) and hope for the best. I'm just glad there's no more tests to give.

2

Shindig, I’m so happy for you that you FINALLY have a diagnosis and treatment plan. Although I’m sorry you have anything at all, it does help to know what youre dealing with and the sometimes long process of testing etc can really test a persons sanity!
I’ve never heard of tolosa hunt syndrome but will look it up after my reply here.
I wish you much luck and pain free days ahead.
(( hugs))

3

It's awesome to read stories where there are diagnoses ... no, it doesn't take the pain away but it's nice to put a name to whatever is ailing you :)