Welcome to the TN Forum! I am one of the new moderators for this forum and I was wondering if the members of this forum would be interested in having a regular checkin thread to keep in touch to check up on each other?

If you are, let's get one started. I have MS and would like to get to know the members of this forum.

I know that a lot of people with MS are often dx'd with TN as well.

Hello AV8 flygirl. You sorta know me already but if not you can read up on me here .
I dont know how many others are up for a weekly check but I am. Kinda nice to get a post once every few days and know how others are doing.
Of corse I have busy weekend plus fathers day and like others my dad has long since passed on.
sending low pain to all along with lots and lots of...
PEACE
BMW
p.s. I did not know that peeps with m.s. also are dx with t.n.
Maybe I should visit the m.s. forum ???

Hi Av8rgirl,

I have ms and tn and anesthesia dolorosa. It is quite a challenge, but it is the excrutiating pain from ad and tn that has taken a toll on my life and family. i was interested in sharing with others their treatments that help ease their pain. what med are you on for ms. i was on tysabri and dev. antibodies to it,so i was taken off. i am very interested in speaking with others who have ms and tn and how they are dealing with it. god bless

Welcome Everlasting! I am currently in a clinical trial for Tovaxin to treat MS. It's a patient specific vaccine that they make from your own blood. I just finished the double blind portion of the study and am waiting to see if I will get into the extension study where I will receive the real drug. In the double blind study I don't know if I was part of the placebo group or the real drug group.

I did have 2 infusions of Tysabri before it was pulled from the market was when it was returned, my insurance company refused to pay for it. So....having failed everything else, that's why I looked for a clinical trial.

I don't have TN but I know that a lot of people with MS do. Not everyone, but some. It like a lot of people with MS also have peripheral neuropathy as well. Not the same part of the nervous system that is affected, but you can have this disease and the disorder.

You don't have to have MS to have TN or vice versa. From what I understand, they are separate dx.

Anyway, welcome. And check in with the MS Forum. We are a bunch of loonies!

Hoping some of us besides me checks in just say hi etc... Everlasting,Jaime,Dlcottage,Melina,Doodlebug,Nik-key,Corkybird....how is ya'all doin lately?????

AV8 I know you be havin some fun and possibly eatting cupcakes . I hope you are able to stay in the "program" and you can celebrate that fact this weekend!holding you in my prayers flygirl

I work weekends again so will be busy. despite when storms move past and t.n flares a bit I am doing good. well if I could ship d.h. to some dark cave when he SNORES..I would be even better

Independence day almost here, God bless our troops and their famlies!

gotta go find something to feed my belly.
A fine wonderful weekend of peace and low pain to everyone in room

Hi, I'm lurking as usual...even though I'm not a TN girl! But my ON is acting up right now, I think the block is wearing off. So, a combination of freezing weather and a sensitive scalp, it's not a lot of fun! Good excuse to stay inside, I say!
Take care all
~Jaime~