I was just wondering if anyone else with TN has tested positive for autoimmune disease. I tested positive but they could never identify which autoimmune disease I had. They thought it was a false positive but tested the same every time. I was curious to know if they could be linked since I am so tired all the time and get sick easily.
I see no connection YET
- but I am on my journey to Rhumetologists-, - because there IS something wrong with me, and the local best doctors can't find it. they have tested me for MANY things - and I'm not positive for any of the top common 30 on their lists!!!
I have high markers for inflammatory disease, and have been on constant antibiotics, steroids, for over a year. Actually when my first time to a doctor about saliva/throat glands issues, it was the year I got TN - 2010.
I will be going to the Washington University in St. Louis to find a reason I have no energy and am constantly sick.
My doctors here wanted me to go to Mayo - but cost too much to travel.
I'ts like when I got TN - I kept hounding, calling, reading, researching - till I got my best TN surgeon, - Total remission
Now I have to keep digging till I find somebody who will make me BETTER than this chronic fatigue crap that is getting old!
Be relentless and if your doctors are not being helpful - go to another one !!!!
As soon as "it" has a name - then I will feel better - knowledge is power!
Hey KC Dancer. I hope they figure it out and help you. I've been to a neurologist, rheumatologist, and a few other specialists. Scans showed inflammation in my ears, sinuses, intestines, pancreas, and knees. All they could tell me was they did not know why. The only thing I've been diagnosed with was TN which does not explain inflammation throughout the rest of my body. I don't understand and it seems none of the doctors do either. They said every thing they tested for is normal. They do not seem at all concerned about the positive results for autoimmune disease. That is why I was wondering if there was any connection. I hope they figure out what it is for you. I know that not knowing is the most difficult part. I pray they help you soon!
I’m learning that sometimes it is hard to pin down just exactly which autoimmune disease it is that you have. Many of them have the same symptoms, some show up on blood tests, some even though they KNOW you have them never show up on blood tests. Then they have to figure out which is primary and which is secondary. Sometimes when you have one you usually have more than one (I for instance have Sjogrens, which they feel is where my TN now ATN came from which goes with my low Thyroid and Arthritis, which is RA and some regular old Osteo Arthritis). All under the auto-immune heading. I have a great Rheumatologist and I always ask questions so I can understand and one appt he showed me a book with pictures and diagrams that showed the different types of arthritis and I pointed them out on my knuckles and hands and he showed that they were different types. I left with more questions than answers except that the knowledge that the diagnosis is hard and not always precise like we want but luckily many of the treatments are the same. All auto-immune and they all pretty much suck. Take care.
May I ask you all one question!
How many silver Amalgam tooth fillings do you have, if any ?
I have come to learn that the silver Amalgam fillings may cause neurological issues, autoimmune disease, chronic illnesses and mental health disorders. The amalgam filling contains mercury along with other metals, mecury is a powerful neurotoxin and at certain levels can cause neurological issues, autoimmune disease. Its now believed that the body can absorb the mercury from the filling which is not good at certain levels over long periods of time. Its always been believed that once the amalgam filling is in-place its safe, but now health organizations say different.
In 2008, Scandinavian countries took action and banned the use of amalgam fillings for environmental and health reasons.
I have at least a dozen or more old amalgam fillings and 6 root canals within a year and half.
I started a new topic HERE! regarding silver Amalgam fillings and what effects they can cause on the body regarding the mercury content.
shadow2 said:
I have at least a dozen or more old amalgam fillings and 6 root canals within a year and half.
It's interesting that you say autoimmune disease ... around the same time (within a year) of the TN starting I had a bout of symptoms which were diagnosed by a nephrologist as IgA nephropathy (luckily it was a flare up and it's now fine but hopefully will stay that way). Immunoglobulin A in your blood attacks the tubules in your kidneys causing damage (I had blood in my urine) and can be triggered by respiratory infections (weird, no idea how that works!). Luckily it was short lived and stopped before it did any decent damage to my kidney function. It is however on my medical record and according to literature people can go into renal failure by 5 years after diagnosis (let's hope that was the only time!). So I guess I have had an autoimmune diagnosis and I have TN!
To be honest I don't believe the mercury thing. Mercury gas is the big baddy and it's not a gas in your fillings.
Mercury vapor is released into the body from mercury fillings. Just Google it, seems there is alot of controversy over the mercury component of dental amalgam fillings.
As of 2008, the use of dental amalgam has been banned in Norway, Sweden and Denmark.
poisonivy said:
It's interesting that you say autoimmune disease ... around the same time (within a year) of the TN starting I had a bout of symptoms which were diagnosed by a nephrologist as IgA nephropathy (luckily it was a flare up and it's now fine but hopefully will stay that way). Immunoglobulin A in your blood attacks the tubules in your kidneys causing damage (I had blood in my urine) and can be triggered by respiratory infections (weird, no idea how that works!). Luckily it was short lived and stopped before it did any decent damage to my kidney function. It is however on my medical record and according to literature people can go into renal failure by 5 years after diagnosis (let's hope that was the only time!). So I guess I have had an autoimmune diagnosis and I have TN!
To be honest I don't believe the mercury thing. Mercury gas is the big baddy and it's not a gas in your fillings.
Research your medications. I also become sick very easily and I take gabapentine and have read some literature that suggests the medication can cause that. I'm going to see my doctor endo of March we will see what he thinks.
There is a strong association between Sjogrens and TN. Sjogrens can either be primary OR a secondary condition to other auto-immune. If you are not working with a good rheumatologist, find one. FWIW my TN is the result of psoriatic arthritis with secondary Sjogrens. I respond quickly to a course of steroids when I have a TN flair. Others are not so lucky. but never underestimate what just a wee bit of inflammation or swollen lymph nodes can do. It was only with an MRI (with stir sequences) during a flair that they nailed it down. I've had few issues since. A good rheumy is really a great detective.
Remember TN is not really a disease in its own right but rather the symptoms of something else going on. It may be nerve compression that is surgically repairable, but often it is not.
I have an appointment with a Rheumatologist because my doctor has determined that I now have Fibromyalgia. I started aching in and between the joints of my fingers as well as my right knee and arm in late February. He tested me for Lupus and Rheumatoid Arthritis, two conditions which are prominent in my family. He was concerned about the possibility of Lupus because of the aching between the joints. X-rays were also taken of my hands and knee. The tests came back negative and the x-rays were fine, except for the one for my knee. It just showed slight generational arthritis. He said that it probably developed some time along with the Trigeminal Neuralgia, but that the drugs I had been taking for the TN probably masked the symptoms. Isn't life just grand with TN? Seriously though, I have learned a lot along the way with this condition. A lot of people have tested positive for autoimmune disease along with TN. You are not alone.
Stabbing headaches including TN have a speculated link to other autoimmune diseases including;
multiple sclerosis, Sjögren's disease, Systemic Lupus Erythematosus, Behçet's disease, autoimmune vasculitis, and antiphospholipid antibody syndrome,in addition to psoriasis and Reumatoid.
I tested positive for PBC in my blood tests but am showing no symptoms of it as of yet. Have been struggling badly with my eyes, mouth, joints, a sensation I can only describe as skin crawling and fatigue on and off for the last few months and am putting pressure on my doctor to do full blood work, haven’t had any done in 6 months. I am no longer taking any medication for TN, have been pain free since January thank God.
My mother has sjogrens syndrome as does two of her sisters and another one has fibromyalgia. Their mother, my grandmother has ms. I’m the first to have TN and unfortunately also the youngest to read positive ANA in the family so far. Just waiting on things to get bad enough that my doctor sits up and pays heed. I often wonder if TN is a symptom of an autoimmune for me, that if the autoimmune was treated right would it help with the TN. MRI was clear.
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I have an autoimmune disease called Hashimoto's. It is an an autoimmune disease of the thyroid. I personally don't think there is a connection with mine. When mine Hashi is acting up I am extremely fatigued and I know I need a medication adjustment. I do know that when I took tegretol it effected my other medication I had a horrible year and had to change my tn meds.
You may be right in your thoughts,
The literature: Hashimoto's is connected to autoimmune mixed connective tissue disorders (MCTD), and shown to be connected with Melkersson-Rosenthal syndrome, also connected with MCTD.
Neurological involvement of the MCTD usually includes, according to the frequency of the occurrence, trigeminal neuralgia,and headaches.
So connected or otherwise, not to be dismissed, but considered.
wendyjo said:
I have an autoimmune disease called Hashimoto's. It is an an autoimmune disease of the thyroid. I personally don't think there is a connection with mine. When mine Hashi is acting up I am extremely fatigued and I know I need a medication adjustment. I do know that when I took tegretol it effected my other medication I had a horrible year and had to change my tn meds.
I have not been diagnosed with any autoimmune diseases but many family members have. My dad had psoriatic arthritis and now my sister suffers with it. My daughter had bells palsy in her early 20s and now has fibromyalgia. My cousin has just been diagnosed with RA and her daughter has Lupus.
yes Sjogren's
Dang I had forgot about Hashimoto's until I read the comment above. My dr and I are currently not treating it. It popped up on blood work and he told me if I start to notice a swelling in my neck to let him know. He knows all of the other medical problems I have so he said that one to just watch out for. fibromyalgia trigeminal neuralgia Got to joke here my nerves have had enough. lol sjogren's arthritis had a cornea transplant in 2010 ADHD now that is fun trying to keep meds straight Plus more I try my best to forget them. Getting pretty good at it until it I have trouble.
Anyone interested in the 'evidence' for autoimmune and TN might find the following of interest;
http://www.ncbi.nlm.nih.gov/pubmed/22244252
http://www.ncbi.nlm.nih.gov/pubmed/7520653
http://www.neurology.org/content/40/6/891.short
I'm also losing count of the number of folk who have a diagnosis of TN, yet then display symptoms of other headache disorders, which are not TN according to classification; swelling, tearing, ptosis, migraine, numbness, red ear, burning tongue, other neuralgis, sinusitis, all of which can have a common cause at the trigeminalcervical nucleus in the neck.(note: not claiming the neck as the cause) You tube vids show sufferers of 'TN', with facial swelling, spasm and ptosis. Anyone with such should question their neuro as to their diagnosis.