1. < Autoimmune Diseases

Trigeminal Neuralgia, Sjogrens Disease or something else?

Posted by skywalker1265 @skywalker1265, Apr 29, 2012

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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joybo99 | @joybo99 | Sep 2, 2023
In reply to @dianaislooking "Yes, my Sjogrens did that to me. Severe migraine, face pain which led to vomiting and..." + (show)
@dianaislooking

Yes, 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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I'm 69 years old and I'm just tired. 43 -year history of MS, and more recently TN, arthritis, long Covid, osteoporosis, fibromyalgia, & a partridge in a pear tree.
I've always wondered about Sjogren's due to history of dry eye & weird pains and sensations in jaw and neck never quite explained.
Anyway at this point, what's the difference? Another label in my chart. Another " We can't fix it" disease! ☹️
I am happy for this website and others , and for people willing to share their experience, advice and to listen.
Thanx.

REPLY
annmae | @annmae | May 23 11:12am
In reply to @bwe "20% of Sjogrens patients present with neurological symptoms first, before any of the more typical Sjogrens..." + (show)
@bwe

20% 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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I was a patient of Dr. Birnbaum's at Hopkins. Extremely thorough! So disappointed he moved to Pittsburgh, lucky people there for sure. I decided to make an appt. with Dr. Birnbaum, he's worth the out-of-state trip!! Other rheumatologists don't examine, test, or research the way he does.

Go see him if you can, first appt is in person, after you can video and see other rheumatologists where you live, they will communicate, and be your team.

REPLY
1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | May 23 3:55pm
In reply to @annmae "I was a patient of Dr. Birnbaum's at Hopkins. Extremely thorough! So disappointed he moved to..." + (show)
@annmae

I was a patient of Dr. Birnbaum's at Hopkins. Extremely thorough! So disappointed he moved to Pittsburgh, lucky people there for sure. I decided to make an appt. with Dr. Birnbaum, he's worth the out-of-state trip!! Other rheumatologists don't examine, test, or research the way he does.

Go see him if you can, first appt is in person, after you can video and see other rheumatologists where you live, they will communicate, and be your team.

Jump to this post

@annmae Welcome to Mayo Clinic Connect! I’m glad that you posted the doctor’s name and he works at the Sjogren Clinic. Are your current doctors working with him to give you better care? Is there anything stopping you from driving out-of-state to see him?

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