My apt for Stanford neuro clinic has been set for Jan 18th. I am a bit annoyed that they told me to bring in my records by hand instead of fax, but oh well...
I also have received a new dx: "unspecified mixed connective tissue disease with a lean to lupus and secondary fibro."
I joined the Lupus Foundation forums and I've learned quite a few things while there. One thing I wanted to ask you guys here is if you have ever heard of TN being commonly found in patients with Lupus? There are some studies out there showing a correlation due to the vascular inflammation issues compressing the TN ganglion. There is a type of lupus that affects the CNS/PNS and has caused TN, migraines and unspecified head pain (all of which I have) in some of the patients.
Any thoughts...? I will of course be proposing this to Stanford, among other things...
Dont have Lupus, but I am aware there are others with Lupus on the site. Try putting the word Lupus into the search engine at the top.
I do have an autimmune condition - Temporal Artritis or Giant Cell Artritis, its known by both names. It is a vascular condition - inflammation of the arteries of the head.
My Rheumy is not aware of a connection but my Neuro thinks they are connected. (both TN1 and GCA develped within weeks of each other)
Hi. Good luck at Stanford! (The most beautiful campus I have seen. Was there to take a couple of classes this past summer.) Bringing records by hand is not so unusual I have found out. I was told the same thing for my Mayo appt. I think it is because they have so many records floating around? They probably still will be doing some faxing, this was the case at Mayo.
I too have come across some references to Lupus with connection to lupus on the internet but I don't read the articles because I don't have lupus as far as I know. I am looking for articles regarding TN in connection with nasal surgery. If I see anything for you I'll let you know. Would you do the same for me?
I scan all my medical reports in PDF format and keep them in my GMAIL account. I can access them anywhere at anytime. Obviously MRI itself can not be, you have to keep those on separate disc.
I have Sjogren's Syndrome/MCTD, and I have also read that there is a possibility that my TN is caused by the general inflammation of those conditions. My new rheumie says it is rare and probably not caused by it, but the neurologist seemed to think it was a real possibility, maybe even probability. However, she also said we may never know. From what I am reading, there is also a strong evidence of a Multiple Sclerosis-like demylinating condition that goes along with SS. So, the answer to me is that it is quite possible, but I don't think physicians know enough about it to feel comfortable in saying so. And many of them are not staying current on new studies and information. Doesn't help much, I know.
Phoebe, have you been in contact with member Linda W?, her TN is a result of Sinus surgery.
B Hamilton, because of my interest in Inflammation being responsible for my TN, I searched Lupus and there is certainly a few people with both conditions. These members may not be active at the moment but you can find and contact them. Let us know your results I would be interested to know.
Phoebe, I have seen that mentioned in another forum I belong to regarding chronic pain so if I see anymore info I will pass it along it you. :)
Jerry, I do have some med records but there are some docs who charge per page, so I just keep my labs as well as summaries on hand, and also I have a doc folder on my smart phone. Boy that helps! I found out this morning that my recent MRI done by a separate imaging center, the one that showed white speckles, will be sent to me on disc to take to Stanford, so that is good news.
booklass, I have been reading info about those topics as well. One lady sent me aninteresting presentation done at Duke regarding overlap syndrome and how complex it really is. It seems to me that due to set standards for DX and DDX most specialists tend to stay away from another specialist's field. I wish I could get all my docs in one room and have an open panel discussion. ;)
Phoebe, I have SLE and TN. I know Sheila Wall (also a member here) does too. I don't know how much light I can shed on the subject, but I am a "sister" in disease conditions! :) I have other cranial nerve issues as well, I've had Bells Palsy a few times, and I have taste/smell type issues also caused by inflammation in the cranial nerves. I've had peripheral neuropathy for many years, about twenty, and the past couple years my PN has gotten much worse. I often have zapping type pain and get quite a few nerve compressions as well.
My neurologist isn't at all sure that there is a relationship between the lupus and the TN and my rheumie is also unsure but believes the TN was from shingles. However, I finally made the call today to a neurosurgeon who specializes in trigeminal nerve problems so maybe I can get finally get some answers and options.
I take tegretol for the TN.
I did notice that my during my first TN attack I ran for the prednisone (as i'm sure your familiar with doing, lol) and I thought it helped somewhat.
I also have had several viruses in my nerves, including coxsackie and of course herpes zoster. Viruses that attack just the nerves and muscles. I had a spotted rash and muscle loss. I'm just getting over the last one.
I'd love to compare notes sometime. Best to ya, Love Julie
ps. I'll also shoot you this message in your inbox. ;)
During my first TN attack, I didn't know any better, so I took 30mg, which is about what I take during some flares. It helped I think. I remember the attack lasted the entire weekend but tapered off after the first two days. I just immediately thought "inflammation" and ran for the prednisone. I do think it helped.
I was already on a small dose of prednisone this past week when the TN symptoms came. It never got as bad as the first attack, thank goodness. I'm so grateful.
I found a website that talks about TN and lupus, it's new and doesn't have people there yet but they sent me a bunch of really interesting files about CNS lupus and neuropsychiatric lupus.
Consensus is the inflammatory process is responsible for the TN. My neuro first poo poo'd my prednisone taking but then said, "wait", maybe it helped, that's ok!" My neurologist thought the TN attack might have been from shingles, but my rash was "suspect" as it didn't really look like a shingles rash, it was sparse although it followed a nerve path.
I have attendency to get viruses in my nerves as just a few months ago I had muscle weakness and a weird rash with no sinus symptoms my rhuemie thought might be a coxsackie virus. Go figure!
Hello, I saw my name mentioned, had to chime in. I have not met many with lupus who also have TN. I was told there is a tendency for lupus to attack (destroy) any part of the body, including the myelin coating on nerves, and when that happens in the spine, we get MS type symptoms, CNS (central nervous system) lupus, and when it happens in the cranial nerves, you get TN and other nerves damaged there. I don't think the doctors know my cause, I have been told about 3 or 4 different possible causes for my TN. Dental work, car accident, low thyroid (TONS of hypothyroid people also have TN), lupus or auto-immune disease, genetics. My diagnosis from many doctors sounds just like yours, mixed connective tissue disease, leaning toward lupus and fibro. Others say straight out lupus and fibro. If there isn't already a lupus group here, maybe we should start one and see how many join. You can also use the search box at the top right of the page and type in "lupus" and see how many people discuss it and have it.
My condition is not Lupus but another autoimmune condition, my Neuro thinks the inflammation of my auto immune condition caused my TN. I am taking 6mgs of Pred each day for Temporal Artrites (which is my auto immune problem) I wonder if this helps the TN? I am on a reduction plan and will only find out as I get lower on the Pred. I reduce 1mg a month.