Oh, what's up w/some of the Dermas prescribing meds for peeps w/Torret Syndrome Meds, or one for seizures which tried both of these as I realize some meds are used to help other conditions, but when the one put me in a Zombie state walking like I was drunk, & the other gave me tremors! What's up with that, & found out I was just being their Guinea Pig (aka Lab Rat), & came to my senses that they did nothing for my PN/LSC, but was causing me to almost fall which I have done that from being a fossil, just didn't the extra nudge too, hmmm.......& other made my legs tremble so bad that I didn't dare attempt driving!! IMO, some of these so-called skin specialists just pass out band aids so they can buy a new boat. Patiently waiting for the new drug that is specifically for PN which March 2024 tentative time frame! By then I should be hobbling around with approx 15-20 bald spots on my scalp from this debilitating horrible disease but after finding this life safer great support group, didn't realize so many poor peeps have had to also deal with such horrific pain & suffering physically and mentally! Some want you to think you need to go to a psychotherapist cuz it's all in your head which mine is, LOL, but maybe they need to do more studying on this overlooked & understudied rare disease!! Rant over!

Hi Carla it is so true. Especially the fact that others think it's in your head, the zapping thinking something is on u. I too am grateful for this site,I was just looking up PN after trying to figure out why and what these things I'm feeling/ seeing. Then this site came up and looking thru it felt like I am human not just me. Appreciate all the feedback words of wisdom.

But Carla, it is true! I have taken "off label" meds off n on for migraines, neuro issues, pain... I'm just tired now... No other people taking this as a true rare disease gets old too! So, rant or not, you are not alone!! 🫂

Could you please share your anti-itch creme ingredients that you developed? Thank you 😲!

Hey yall--It is really comforting to know that we are not alone. I am 86 years old and so don't have as many years ahead to suffer, but am certainly looking for a solution. I am not very trusting iof Big Pharma and prefer natural solutions when it comes to experimenting. Praying that the new 'DRUG" will be safe with minimal side effects, but I am not willing to be a guinea pig. I have developed my own anti-itch creme which give me several hours of relief {and some areas have cleared up but it is not a curel Let's keep praying for a permanent solution