I am curious to find out if anyone on this group has neurologic complications from Sjogren's? I have been diagnosed with Trigeminal Neuralgia, which can be a side effect from the Sjogren's, but I really don't understand how Sjogren's can affect us neurologically.
I, too have neurological side effects - I have varying degrees of numbness in my lips and face. When it’s bad, it can go up to my eyes and can cause pain that feels like a toothache or sinus infection. Joy. The sad truth is that Sjogren’s can effect pretty much any organ system in our bodies.
MissMaggie
Well, first I am sorry you suffer from neurological side effects too, but it is nice to know I am not alone. Do you take medication for this?
MissMaggie said:
I, too have neurological side effects - I have varying degrees of numbness in my lips and face. When it's bad, it can go up to my eyes and can cause pain that feels like a toothache or sinus infection. Joy. The sad truth is that Sjogren's can effect pretty much any organ system in our bodies.
MissMaggie
No, I am extremely sensitive to medications and take as little as possible. I tried Plaquenel, but had to stop (made me very nauseous). The best thing I’ve done to help control all of my symptoms is diet - going gluten free and eliminating processed food. If I “cheat” (and do from time to time), I will feel the results quickly - Brain fog is the first symptom, then it tends to trigger a flare, which can last weeks or even months. (You would think that would be enough to keep me on track, but there are times when a good sandwich or burger sways me off course. Then I always vow never to do it again…)
You are definitely not alone with the neuropathy - I think it’s probably more common than you think. One thing I will say is that we shouldn’t automatically assume these symptoms are part of our Sjogren’s, because there can be other things going on. I went through a series of testing to rule out other things like MS and brain tumor (that scared me), but, like I said, Sjogren’s can effect any of our systems…
MissMaggie
I have done ok on the Sjs meds, I take generics of plaquenil and evoxac, and was doing pretty well. But then I also had to do the whole brain MRI to rule out the bad stuff. I am having trouble with the meds for the trigeminal. I seem to be sensitive to those. I get brain fog really bad from them. And fatigue! It is like having all the benefits from the Sjogren's meds removed, to relieve the pain from the trigeminal.
MissMaggie said:
No, I am extremely sensitive to medications and take as little as possible. I tried Plaquenel, but had to stop (made me very nauseous). The best thing I've done to help control all of my symptoms is diet - going gluten free and eliminating processed food. If I "cheat" (and do from time to time), I will feel the results quickly - Brain fog is the first symptom, then it tends to trigger a flare, which can last weeks or even months. (You would think that would be enough to keep me on track, but there are times when a good sandwich or burger sways me off course. Then I always vow never to do it again...)
You are definitely not alone with the neuropathy - I think it's probably more common than you think. One thing I will say is that we shouldn't automatically assume these symptoms are part of our Sjogren's, because there can be other things going on. I went through a series of testing to rule out other things like MS and brain tumor (that scared me), but, like I said, Sjogren's can effect any of our systems...
MissMaggie
I've had neurological issues too. Typically more of a hassle than anything else, but there they are. Most of the stuff is probably Sjogren's related, rather than PsA related, although either way, it's all related to inflammation.
Because I presented with eye pain and headache, I went through all of the testing as well. I have some mild issues, but the MRI was clean.
This is an old post … I hope Maggie and others who posted might see it. I have Atypical TN … After some questionable dental work. MRI showed some weird white spots on brain, not ID’d, but I do not have MS. I use a strong compounded cream on my face for the TN pain. It appears to be permanent. I have mild neuropathy in left foot. I use OTC cream for this pain. The foot pain, I think is SS related. Not sure about the other due to a problem at the dental office. Been a rough few years. TN stuff is hOrrid.
Sending you a hug Nomad, glad you have some good Doctors!
Because our T-cells are involved in every fiber of our beings!
PLEASE READ THE FOLLOWING:
2012 Oct 11;120(15):3142-51. doi: 10.1182/blood-2011-11-391144. Epub 2012 Aug 27.
Allogeneic mesenchymal stem cell treatment alleviates experimental and clinical Sjögren syndrome.
Xu J1, Wang D, Liu D, Fan Z, Zhang H, Liu O, Ding G, Gao R, Zhang C, Ding Y, Bromberg JS, Chen W, Sun L, Wang S.
Abstract
Sjögren syndrome (SS) is a systemic autoimmune disease characterized by dry mouth and eyes, and the cellular and molecular mechanisms for its pathogenesis are complex. Here we reveal, for the first time, that bone marrow mesenchymal stem cells in SS-like NOD/Ltj mice and human patients were defective in immunoregulatory functions. Importantly, treatment with mesenchymal stem cells (MSCs) suppressed autoimmunity and restored salivary gland secretory function in both mouse models and SS patients. MSC treatment directed T cells toward Treg and Th2, while suppressing Th17 and Tfh responses, and alleviated disease symptoms. Infused MSCs migrated toward the inflammatory regions in a stromal cell-derived factor-1-dependent manner, as neutralization of stromal cell-derived factor-1 ligand CXCR4 abolished the effectiveness of bone marrow mesenchymal stem cell treatment. Collectively, our study suggests that immunologic regulatory functions of MSCs play an important role in SS pathogenesis, and allogeneic MSC treatment may provide a novel, effective, and safe therapy for patients with SS.
I have Secondary SS. I had Lupus int twenties and thirties that is in remission. Perhaps 3 years ago I noticed dry eyes and mouth. After some crazy dental work, I went to the doc to see if the Lupus was active. It wasn’t, but I was determined to have SS. The ATN is very much related to some inappropriate dental work, but perhaps I had some propensity. The mild neuropathy in my foot is new and I think it is SS related. I had the regular nerve conduction test and it was fine. Doc says if foot neuroPathy worsens, we will do small fiber test.
I have Atypical Trigeminal Neurologia, they think it came from my Sjogrens. I am with Nomad, it has been horrendous, although it is not bad for everyone I must add.
I have primary Sjogren's. My doctor did not even mention that there are different kinds of TN, but from my own reading, ai am assuming I have ATN. In January I stopped Gabapentin and am now using Cymbalta. I am not 100% pain free, but close enough, and I don't have anywhere near as much brain fog. For right now it is a balance I can live with.
Hi Kaz, I had acupuncture 2x week for 3 months. It helped my arthritis but not my TN or SJ dry symptoms. Take care
Mcspires, it sounds like your dr. is not very knowledgable about TN and that can be really dangerous. If things change, please research or contact people who know about the different types of TN and the specific meds for ATN, etc. I am not trying to sound like a “know it all” but people have been made worse by blindly following a dr who doesn’t know anything about these rarer diseases.
Thanks TL. I live in Cheyenne, WY and we do not have a great selection of doctors. I was fighting something for years and my GP couldn't figure it out. I finally just gave up. I do have a new GP, and from my own studying I went in and asked to be tested for Sjogren's. She was kind of put out that I asked until she looked in my mouth, and then agreed to test me. She diagnosed me with Sjogren's based on SSA and SSB being positive off the charts. However, that is not enough when you read the criteria for Sjogren's. She referred me to an rheumatologist that was even worse. He did no testing, just started treating me for Sjogren's. He never answered my questions, and acted like I was a whiner, so I asked the the GP doc to follow me for Sjogrens. Then I started with the TN symptoms. She referred me to the neurologist, but I have only seen the neurologists PA. He ordered MRI with and without contrast. They got the one without contrast, but after 8 stabs they could not get an IV started and sent me home without the one with contrast. The neurologist said he got enough with the MRI to see there weren't tumors. He has tried 3 drugs and says if the cymbalta doesn't work he wants to send me to Denver to his buddy that does gamma knife. I am not going!
Kaz thanks for the reading. Very interesting! I sure don't think my doctors have a clue. :( Either that, or they think I am not intelligent enough to understand?
Kaz said:
A few things for you to read. It is more primary Sjogrens that causes neurological issues and can cause lesions (similar to MS plaques) in the brain as well. Sometimes the two diseases can be confused, however, they also can co-exist... I have both MS and Sj. Do you have primary Sjogrens? If so, then CNS involvment can and does occur.
http://www.hopkinssjogrens.org/disease-information/sjogrens-syndrom...
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2812738/http://rheumatology.oxfordjournals.org/content/49/8/1540.long
If you want to have a discussion with someone who has had gamma knife, NorthwoodsGMa (Laurel) a moderator on our BF Fibromyalgia site, has had this surgery. She would be happy to answer any questions you may have, mc.
mcspires said:
Thanks TL. I live in Cheyenne, WY and we do not have a great selection of doctors. I was fighting something for years and my GP couldn't figure it out. I finally just gave up. I do have a new GP, and from my own studying I went in and asked to be tested for Sjogren's. She was kind of put out that I asked until she looked in my mouth, and then agreed to test me. She diagnosed me with Sjogren's based on SSA and SSB being positive off the charts. However, that is not enough when you read the criteria for Sjogren's. She referred me to an rheumatologist that was even worse. He did no testing, just started treating me for Sjogren's. He never answered my questions, and acted like I was a whiner, so I asked the the GP doc to follow me for Sjogrens. Then I started with the TN symptoms. She referred me to the neurologist, but I have only seen the neurologists PA. He ordered MRI with and without contrast. They got the one without contrast, but after 8 stabs they could not get an IV started and sent me home without the one with contrast. The neurologist said he got enough with the MRI to see there weren't tumors. He has tried 3 drugs and says if the cymbalta doesn't work he wants to send me to Denver to his buddy that does gamma knife. I am not going!
Well, my last bloodwork was September, and was just my own annual health fair results, not what the dr. requested. Luckily, magnesium, calcium, B12 and TSH were normal. Vitamin D was low 24.8. GP told me to take D but not really how much. On my own I take a multivitamin, a fish oil, a baby aspirin, D, and senna (for constipation). I take generic plaquenil and evoxac for Sjogren's and generic cymbalta for TN. I sure appreciate this information!!!
Kaz said:
He would have been looking for MS and they can tell by MRI no contrast if there are plaques (lesions). TN is either caused through obstruction (sometime acoustic neuromas - slow growing tumours), or inflammation to the nerve from other autoimmune diseases. Trying to reduce inflammation in the body is a key element when there is no obstruction. If you do not take high strength fish oil already, I would suggest you look into it providing you are not on blood thinner (anticoagulant or antiplatelet medications).
To reduce inflammation in the body dosage needs to contain no less than 1 gram of the EPA content (fish is broken into EP and DHA). It takes around 3 weeks to kick in, but must be taken regularly every day.
The other really important thing is vitamin D. People with autoimmune disease need their levels to be around 150nmols. Each 1,000iu taken equates to approx. 25nmols in the blood. People should have their vitamin D levels checked every 3 months along with blood calcium and magnesium. As vitamin D using magnesium in the body to metabolise, so one may need to take magnesium supplements if say taking between 5,000iu-10,000iu of vitamin D 3 daily.My neuro recommends I take 5,000iu daily and 10,000iu in winter. I have blood tests every 3 months and work out from there how much I need for each season.
Also another very IMPORTANT thing to have checked, as this can cause nerve pain, is to have your B12 levels checked. Low levels can cause all sorts of neurological issues and this is often overlooked. Low levels are generally associated with auotimmune diseases as well. B12 is a awater soluble vitamin so you will pee out excess, so cannot overdose per se. So you could buy some and start taking it daily and see what sort of difference you begin to notice.
However, I would ask for a blood test as if you arew deficient you may need mega dose injection of B12 to get levels back up. Also get your thyroid function test done as this can also cause issues.As for antiepiletic meds, they generally will work for a period of time become ineffective as the body gets used to them. Generally a person starts on lower and ends up increasing the dose to maximum because of this reason, and then over time it has little effect.
So my advice is go and ask for blood tests: Vitamin D, Vitamin B12, blood calcium, magnesium, CBC, TSH.
Bens Friends has an excellent TN site!!! I did acupuncture at the beginning and it only helped a little. I tried many meds but the side effects were too difficult for me. I’m getting good relief with a compounded cream. In the cream is: Gabapentin, capsaicin and lidocaine. NO noticeable side effects. I also take by mouth a tablet like Elavil. The cream didn’t work immediately, but when it did, it was like a miracle. I still have issues with travel and cold breezes, but my compounded cream that I rub on my face has helped a LOT!!! I am very very very grateful for it!!!
My D3 and B12 levels are checked often and are high normal…one of my neuros who is “into” vitamins says high-normal is best.
I’m having trouble with blood tests…very hard to get my blood. Please see my separate post/discussion about that. Many thanks.
I've got Trigeminal Neuralgia and gall stone problems also.