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Trigeminal Neuralgia, Sjogrens Disease or something else?
I am desperately seeking information to help my wife of 24 years. She was an active mother of four kids and a high school teacher 14 years ago. However, she began having extreme facial pain in 1999, and was initially diagnosed with Trigeminal Neuralgia and Facial Migraines. She was prescribed medication to help control this issue, but her symptoms soon began to affect other areas of her body and she could not seem to find relief through the meds. She was later diagnosed with Fibromyalgia, and a new prescription regimen began. Since that time, she has exhibited various symptoms which would suggest auto immune disorder, however, she has never had any prolonged relief from the MANY CHANGING SYMPTOMS. She now has no motivation to do anything outside of the house. She very rarely has the energy to do any of the typical household activities such as cook, clean, laundry etc. She does not sleep well most of the time; she runs low grade fevers; she takes pain meds daily. Recently, her eye doctor told her she has Sjrogens Disease. She has been to so many different doctors that I cannot even begin to guess the number, and we have spent thousands of dollars from our life savings over the last 12 years chasing a proper diagnoses and cure or treatment for her to have a decent life with our family. She is giving up, but I am passionately seeking an answer to this nightmare. I am hoping that someone out there may have some idea of who we can turn to for help.
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Thank you piglit.
Hi Skywalker,
Doesn't hurt to make supportive friends either. We all have a common bond in one form or another and it's always helpful to learn from other.
Take good care of yourself!
Roxie
Lizzie that post was comprehensive and very consiserate! You see skywalker? You can benefit with us because like I said there are so many commonalities that you're bound to get something out of being a member.
Hugs,
Rox
Always here if you need me Take care
As a retired nurse with many health problems, my heart go's out to your family. The only suggestion I have is find a top notch rhematologist and have her tested for autoimmune disorders. I suffer from an autoimmune disorder that has led to depression, heart problems and many years of ups and downs. I am now unable to work and that has been stressful, but I am adjusting. Whwn your wife finally gets a diagnosis and gets treatment,she too will learn to adjust to her illness and manage it and not allow it to manage her. It tool 6 years for me to get a diagnosis. Hang in there.
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1 ReactionSee a Rhumy. Sjogrens and many other Autoimmune illness can cause the symptoms. Sjogrens is generally thought of as dry eyes/mouth. often blown off by providers. IT can affect every organ in your body. I was dx with Sjogrens, Raynauds, Thryroiditis, ?lupus, RA and ......Bcell Lymphoma. ALL at once! (The Rituxan infusions where difficult, but post treatment what a world of difference, a gift. But, they wear off and long term affects are just as frightening.)Yet for 4 years I went and complained fo body aches that moved around. Chronic neck pain (lesion was growing around the base of my neck and I was told over and over it was from chronic inflammation....cancer. Dry eyes, mouth, skin, overwhelming fatigue, sleep disturbances (waking achey, have to move) random nausea, hightened and then decreased sence of smell. One can view it as a nightmare.. and it was and has been in MANY ways BUT...during this time I increased fish oil, flax oil, consumed large quantities of water, and still do. I reviewed my diet and although I have always been conscious of good nutrition made changes anyway to see if these helped. They have. Little or no sugar, aside from natural occuring in fruits and juices etc. (more difficult that it sounds...sugar is in everything!) I was an avid dairy lover...just fermented now (yogurt and keifer daily) sometimes soft cheese like goats, feta etc. Now am trying a curtailed gluten consumtion and don't see much additional change, but will keep at for awhile longer.
The only med I take is xanax in the pm for a 6 hour straight sleep period. Occ have to nap in the day time. I exercise on good days, cause when the bad days hit, not much gets done....the thing is they are not as common as frequent as they where although they are unpredictable at best and this is fustrating.....but learning to go with the flow and not feel like a slug...it is what it is.
It is hard to make changes, comfort measures if you will, they take effort, energy and commitment...not easy when you are so fatigued/fogged.
You sound like a commited partner, I am lucky to have this also and between the two of you hopefully you will find a better spot. Meds are not always the anwser...I have opted so far not to take any DMR's etc. Nothing will eradicate these ills but comfort measures and some lifestyle changes go a long way...And alternative therapies may also help....massage etc, etc.
Good Luck to you both.
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1 ReactionI just watched a neuro immunologist speak named Aaron Boster on some of the invisible symptoms of MS. I have Sjogrens Disease and it affects my tendons… and was watching him as i have been developing a whole new set of symptoms wondering if any were ms like. He talked a lot about the face pain… and many of the symptoms you mentioned your wife has. Worth a listen. It was on YouTube.
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1 Reaction20% of Sjogrens patients present with neurological symptoms first, before any of the more typical Sjogrens symptoms. Trigeminal nerve is a favorite spot for Sjögrens to
impact. I had significant facial pain for several years before the dryness, crushing fatigue, and inflammatory joint pains started. There’s a Sjogrens expert who focuses on the neurological aspects at Pittsburgh, Julius Birnbaum. He used to be at Johns Hopkins; you can read about the neurological complications of Sjogrens on their Sjogrens Center website.
I haven’t seen Dr Birnbaum as I live in New England, but have a young rheumatologist and neurologist who are quite up to date and understand the whole picture. I hope you can get the care you deserve. Best wishes.
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6 ReactionsThank you so much!!! I just watched a couple of his lectures. Brilliant guy. This is great to know.
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1 ReactionYes, my Sjogrens did that to me. Severe migraine, face pain which led to vomiting and days of just wanting it all to be over. Wound up in the ER for dehydration, malnourishion, due to vomiting, and after 5 days of more pain than I could handle. CT, and MRI done. No problem found to explain until they found my CNS Sjogrens ( central nervous system) had again taken off with ith new lesions. Placed back on steroids to try to get it under control. This whole dx threw me for a loop. Almost unheard of, only one in my area that is known of.
I had been diagnosed with duel Sjogrens and MS for many years. My new neurologist as of less than 2 years discovered an identifying mark on my MRI along with massive network of demilatation, told him I didn't have MS but this other big nightmare. The recent flair of my Sjogrens honed in on my most recent trauma place and ran with it. Sjogrens is the great pretender. I will mimic and intensify anything. Pseudo gout, rhumatoid arthritis, and many many more. I said a prayer for your family and encourage you to keep looking for answers. Be her advocate and never give up. It took them over 20 years, but, changing to a more caring and persistent neurologist was key. My old one would refuse to do MRIs, saying it was not my MS, and all I needed was PT.
Good luck and gental hugs
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