Well Hi guys, I've miss this place a lot and after lots of pain and brain fog and doing reserch on my own I had to tell the doctor what was wrong with me...........!!!!
It an autoammune disorder called sjogrens and I would like to post a link or to so you guys can read this. Maybe I can help someone else so they don't go for years like I did. This can cause TN along wish other things, and I'm sure many of our doctors really don't even know that as I have discovered from my many trips to all kinds of doctors.
Hi Diana, Thanks for sharing! I was already aware of this disease as I read, read, read! About anything medical! But that was great & much appreciated I’m sure, by the other members too! Regards Sally
Thanks Sally, I hope it helps someone, my cranial nerves and fibromalgia started first, before I noticed any dryness. LOL I think because it hurts more.
Keep getting tested because sjogrens does not always show up in the blood work and you can still have it. Are you talking about my profile photo? Its a pic that I found on the internet a long time ago, feel free to use it. xoxox
Kc Dancer Kc said:
I was tested for sojourns because I got many ear/throat/mouth infections when I couldn't hardly brush my teeth for 1 year !
Hello all! Diana, I love that you figured out your Dx on your own! Unfortunately, too many of us need to take the lead & help ourselves out. I have a rare diagnosis (Mitochondrial Cytopathy) which I think may start the other ones, who knows. Through a lot of research I figured out what was wrong with me & went to the Dr I knew would send me to the right specialist. It took a long time & a muscle biopsy but I was right. Recently when my life came to a screeching halt due to the TN my PCP wouldn't bother with me, thinking it was a sinus infection. Again, I researched it, came up with TN then called my ENT specialist to diagnose it for me, which he did. Actually, he couldn't believe it because it's so uncommon. Anyway, he told me to contact my neurologist for help & call my PCP to inform him. We're not always going to be right but when we are, we can save so much time that we could be desparately suffering! I don't know how long you've been looking for answers but for me just figuring out how to deal with the Dr.s & ER has lifted a load of anxiety that I knew I was feeling but I didn't realize just how debilitating it was until I figured the system out. They still cause me anxiety, probably always will but hopefully not to the point that I'm crumpled on the bathroom floor not knowing what to do!
Diana I found I had an Autoimmune problem - Temporal Artrites and TN within 6 weeks of each other. My GP thinks there is a link, my Neuro thinks the Auto immune problem triggered the TN yet my Rhumatologist who treats the Auto immune problem refuses to believe it as he has never come across it before. Thanks for this.
Hello all! Diana, I love that you figured out your Dx on your own! Unfortunately, too many of us need to take the lead & help ourselves out. I have a rare diagnosis (Mitochondrial Cytopathy) which I think may start the other ones, who knows. Through a lot of research I figured out what was wrong with me & went to the Dr I knew would send me to the right specialist. It took a long time & a muscle biopsy but I was right. Recently when my life came to a screeching halt due to the TN my PCP wouldn't bother with me, thinking it was a sinus infection. Again, I researched it, came up with TN then called my ENT specialist to diagnose it for me, which he did. Actually, he couldn't believe it because it's so uncommon. Anyway, he told me to contact my neurologist for help & call my PCP to inform him. We're not always going to be right but when we are, we can save so much time that we could be desparately suffering! I don't know how long you've been looking for answers but for me just figuring out how to deal with the Dr.s & ER has lifted a load of anxiety that I knew I was feeling but I didn't realize just how debilitating it was until I figured the system out. They still cause me anxiety, probably always will but hopefully not to the point that I'm crumpled on the bathroom floor not knowing what to do!
Omg yes, that sound just like my story, its amazing what we have to to to get the dr to believe us. Lol to bad we dont get paid for all the work we do especially when we feel like death.
Thanks for this info. My mother has sjogrens and from my understanding it is hereditary. I don't have any dryness in my eyes or mouth but I think it may be worth mentioning to my doctor now as I hadn't before. Thanks!
I hope you don't mind me writing back after such a long time. I was diagnosed with Sjogren's January 2012 after at least five years or more of trying to find out what was wrong. I finally figured it out myself and asked to be tested. I tested off the charts positive on both the ssa and ssb. Now, about two weeks ago I was diagnosed with TN. I am worried that they didn't do an MRI or anything. I started carbamazepine and did fine - pain free for nearly a week, then the pain started coming through again. I was only on 100 twice a day. They doubled it to 200 twice a day, and same thing happened - today some pain started coming through again. I am going to give it some time before I call the doc.
I am curious if the disease progression is the same for us sjoggie's. I haven't seen anything on this at all. I have read that this is a "complication" of Sjogren's. I do not have a good rheumatologist.
Anyway, I just wanted to connect. Hoping you are feeling well today,
Continuing the same theme I found I had Temporal Artrites which is an Autoimmune problem ( Inflammation of the temples) My Neuro thinks it is possible that this triggered my TN. Thankfully after 18 months on steroids the TN is no longer present.
I have been diagnosed with Sjogrens for less than a year and have had to figure out some of the pieces of the diagnostic puzzle myself at first. I talked my way into my daughters Rheumatologist who confirmed what I had figured out on my own. Since then I have learned a lot about Sjogrens, including that it can cause TN in some cases AND that the whole auto-immune thing is inter-connected. The more science and medicine learns about auto-immune issues and treating it’s impact on the body I’m seeing that it’s all connected. I was talking to my Rheumatologist about my arthritis which seems to have turned rabid within the last month and I asked him what the name was for the specific kind that I was watching appear in my fingers very recently, and he started explaining about all of the auto-immune arthritis and their treatments and I was amazed (and discouraged). He also has talked to me about how some TN occurs as a result of Sjogrens. I read everything I can find about the subject and there’s lots and lots of information out there about TN. I keep hoping that an avenue of treating TN could be achieved by treating Sjogrens if that is indeed the primary cause but that seems to be a bit too “Pollyanna-ish” to be true even though it seems that Sjogrens can be managed somewhat (I wish I could say that about TN, at least for me right now).