I'm Not Alone in the Dark Anymore

I want to thank Ben Munoz and all of the members on this site, especially my friends and the friends I've yet to make. I've had this horrible disease for 20 years, battling all alone. I'm not alone in the dark anymore and I know I never will be again. This site has changed my life in so many positive ways that I cannot possibly list them all. I was out of town for five days without access to the internet and I missed you all very much. When we are joined together to help each other we will never be alone. Thanks so much for all of your support!

James

Thank YOU for posting on my thread(s). Good humor, as you’ve obviously figured out, is just one way to fight this hell that we call TN.

Like yourself, I too have been fighting this for 20 years, well, actually 17, but I’m rounding up. :slight_smile: I didn’t know what I had until just a year ago. I fought this battle without any medication for years. By 2002, it was really destroying my life. FINALLY someone shined a light on what could be going on. Since then, I - like all of you - are on the same, ever so steep road to some kind of relief and recovery.

Hopefully, one day soon, there will be help for all of us without evasive procedures and terrible side effects.

I have joined a few ‘support groups’ around the internet and found them to be mostly centered on people venting about how terrible everything is in life, but offering no support or personal medical information.

I was pleasantly surprised when I found this website and the people that visit within. Having actual support from people whom know what toll this takes on ones’ life is very welcome. Everyone that has replied to my threads have been more helpful than any ‘MD’ site on the internet.

I too thank you all. I hope everyone reading this is having a PAIN FREE day.

when i read these stories, my energies are renewed to helping people understand the complexities of neuropathic facial pain and TN. this is a long road we have ahead of us, and the choices we make are full of uncertainty. it is so vitally important we have as much correct information as possible to navigate the journey.

i also want to take stories like James’ to the medical community, who continue to neglect facial pain as an area of much needed research and understanding. how many more years must facial pain disorders be in the dark?

thank you for writing James. this tugged at my heart.

vesper

Mr James,

Your heartfelt words speak volumes. bob

Hi James,

I am a member of LivingWithTN and worked with Ben to create LivingWithCMT for Charcot Marie Tooth sufferers, a rare disease that my father and brother both have. It was just launched and I am working to get members. Would you mind if I copied your quote from above onto the CMT site? I feel so blessed to have found this site so early in my diagnosis and cannot imagine going 20 years having this disease alone. I hope that your quote my have any visitors with CMT feel better about joining.

I hope this finds you having a pain free day.

Debbie

So good to here you are pain free James.

I am recently diagnosed and it’s been hard, I was depressed yesterday and telling my mum, she said hmmm i think you shuld give up looking on the LWTN site it might be making you worse, I had to explain to her exactly like what you said James, I am no longer alone and the information I have gained on here is amazing.

Thanks to LWTN I don’t feel like a complete weirdo ha ha close but not a complete one :slight_smile:

Thanks Guys