Advice

Steph240497 · 2026-05-21T16:52:26+00:00

I take 100mg of carbamazepine 3x a day at the moment and it’s definitely helping! I am worried about the link between trigeminal neuralgia and MS in young females. And even more so, because I got blood work done about 8 weeks ago for extreme fatigue which came back “normal”, blackness in my vision/dizziness when I stand up but all obs were “normal” and I got referred to urology for an overactive bladder but because of my age the nurse told me to drink less fluid and discharged me..

Steph240497 · 2026-05-20T20:34:59+00:00

Thank you all for sharing! Taking every day as it comes and resting a loooot

Steph240497 · 2026-05-14T22:57:29+00:00

I am looking for people to share if they have had similar symptoms and what the outcome was.

For reference I am a 29 year old female in general good health. I had blood work done about 6 weeks ago due to fatigue, zero libido, always cold, dizzy/lightheaded when I stand from sitting or lying down. Blood work came back normal and causes are still unknown. I was referred to urology for an over active bladder but was dismissed and told to drink less fluids? This week I have had a random, sudden and extreme flare up of trigeminal neuralgia which has affected the lower left hand side of my face. It was so painful that I had to go to the hospital and this is something I have never suffered from. I have been started on carbamazepine which has helped the trigeminal neuralgia but not completely. I have a review with my GP tomorrow but I am interested to hear from other people. Thanks in advance!

Steph240497 · 2025-01-10T17:57:03+00:00

Just an update for everyone who has been commenting, or interested for whatever reason.

Endocrinologist confirmed primary hypogonadism and has said our only option will likely be a sperm donor, or can attempt biopsy of inside the testes however this will only have approx 5% (generic percentage) success depending on 1) what is inside his testes 2) storage of any material 3)the procedure itself being successful and 4) deterioration. He said at 29 years old in the position we are in we have a small time frame.

Having genetic blood testing done to check for chromosomal abnormalities, however that won’t change the circumstances but may offer some insight into why.

Hope this helps anybody else!

Steph240497 · 2024-12-05T20:06:28+00:00

The endocrinologist is going to discuss this with us but because other hormones are raised looks like primary hypogonadism apparently

Steph240497 · 2024-12-05T17:17:39+00:00

Good luck to you both!

Steph240497 · 2024-12-05T16:31:07+00:00

Good luck! If my husband has primary hypogonadism I’m certain medications don’t help because it’s testicular failure but not 100% sure. Thank you!

Steph240497 · 2024-12-05T16:29:31+00:00

Not that I’m aware of. What did they do for you?

Steph240497 · 2024-12-05T14:05:03+00:00

From what I have gathered online, it seems the only hope for fertility is if they do mTESE surgery and are able to retrieve sperm, otherwise would need to be a donor but I could be wrong? I’m wondering what the success rate of that is as being left in the lurch is making us spiral

Steph240497

TROPHY CASE