I have had horrible jaw pain, dry mouth, weird nerve sensations in my face, swollen paratid glands, extreme fatigue and soreness and have been trying to get diagnosed over a year. My blood tests are normal except for elevated crp ( inflammation). The only relief i have had was a brief week long trial on prednisone, i felt great but jaw still hurt a bit. My doctor said it cant be sjogrens because trimengal neuralgia ( my inflammed or damaged facial nerve) can not be anything to do with sjogrens. I read on john hopkins site that it IS possible . Any thoughts ?? My doc went to john hopkins btw
Hello, Tracyrose, welcome to Sjogren's World.
I'm curious about how and when you were diagnosed with trigeminal neuralgia. There is a condition called trigeminal neuroapathy, which is the most common neuropathy associated with Sjogren's, and is often misdiagnosed as neuralgia.
It's also possible to have both conditions, unrelated to each other........Sjogren's has nothing to do with a broken leg, either, but it is possible to have both!
I'm not saying your doctor is wrong, such a harsh word, but maybe he is holding too tightly to not fully informed ideas? Is it possible to get a second opinion?
Hello tracyrose and welcome to the forum. I have found the members to be helpful, supportive and informative at times of need since being diagnosed with sjogrens a year and a half ago almost now.
I was one of the "lucky" ones so to speak where the bloodwork proved sjogrens but there are many folks on this forum who have negative bloodwork but have found a team of medical professionals who are treating based on symptoms.
I am not an expert by any stretch of the imagination when it comes to anything related to sjogrens...I am still learning, but I would have to agree with Linda...is it possible to get a second opinion? Is the dr you are referring to a rheumatologist or a GP? It could make a difference. I also believe, and this is my own humble opinion, that there are many rheumies out there who are not as knowledgeable as they should be about sjogrens...that being said there are many who are.
Hoping you find some much needed answers and some options for treatment. keep us posted.
Sending positive thoughts your way.
Hi Tracyrose,
I experienced the same symptoms minus the nerve pain after being diagnosed with RA 2010. All of my sjogren's specific blood tests were negative and I was told to "drink a lot of water" for my dry mouth. I sought a second opinion from a JHH rheumatologist and was finally diagnosed with Sjogren's by lip biopsy in 2012. Perhaps a second opinion may be beneficial?
Best of luck!
Thanks for your replies. I am seeing a primary care doc , rheumatologist and an ENT. My primary care doc originally came up with sjogrens, my ENT has mentioned sjogrens and triminegal neuralgia and my rheumatologist told me she is stumped. They are in the same hospital building with the same computers but still takes them weeks to message each other or get back to me. The nurses are starting to get hostile when i call as well. I am probably losing my job from all this, i have constant pain, dry mouth so bad that i talk funny and very tired most days , i have very few good days now . I also had a full hormone workup and now they are sending me to an oral surgeon . The pain is in a different place on my jaw everyday and goes into my neck now , and sometimes my scalp. I read that eye doctors have an early test for sjogrens called Sjo and i am trying to find out about that. My specialists have made me feel very much like i am on my own , and i am getting really depressed and cry most days because i dont know where to turn . I think my rheumatologist is very young and afraid to try any meds without that bloodwork being positive . What is the difference between neuralgia and neuropathy? Thanks for your help guys!!!
1) Basic question: Probably (is dr. wrong)
2) ? re Trigeminal neuralgia or neuropathy-You know? This is so common for someone (dr or layman) to say one medical term and the listener "hears" another one. This is worth a clarification in the form of "did I hear correctly?" Great point Linda makes there.
3) 3 drs in same "hospital bldg." doesn't mean same physician's group. SHOULD but doesn't. After my dx, I took my blood tests with me to each dr to copy and have in their records. A couple of weeks ago there were several who noted Autoimmune disorder was mentioned on Nurse Jackie. this week they did the same thing. But this week's episode pointed out how drs are not looking at all the records a patient has to present to each one. It was a portrayal of a woman who came into the ER with a not so organized binder of reports with a bag of medicine from various doctors. Nurse Jackie saves the day by realizing the pt is not a junkie, but AI. The story continues by getting the "3" main doctors together in the room with the pt. (I know: drama.)
4) The sad, sad truth is it takes years to dx Sjogren's. Cooperation among your doctors is critical. However, the sad , sad truth is there is no cooperation without a diagnosis. Before my rheumy did my blood work he suggested he believed I would come back with Sicca complex. This is quite important. MANY on this board will tell you MANY doctors will treat your symptoms. That is what you need/want immediately: relief. (so you can continue working)
5) Medication: you can buy xylimelts over the counter (or at amazon) which will help your mouth and your speech output. Won't "fix" you. But will help your discomfort. There are other items out there but this is OTC which lasts for a few hours.
6) Re: Linda's comments: the facial nerve problem? I know the last thing you need is another dr. Have you seen a neurologist? Will NOT help for SjS dx...but will answer why you have that condition and if it is believed to be associated with symptoms which are causing so much discomfort.
And Tracy: a hint. Before I was dxed, I read (don't know where) to drink small sips of water, let it pool in the lower mouth (behind your teeth). Let it stay as long as you can, then swallow. Repeat often. And this was the reason: drinking copious amounts of water washes precious mucous/saliva out of your mouth. You still have lots...just doesn't feel like it. It works. I have never said this on this board as 100% of the water advice is "sip, swish, swallow". I am relatively new here and don't want to contradict the decades of experience here. But this is BEFORE I had medication or dx...was suffering the sandpaper mouth, "cottage cheese" roof of mouth, etc. You know. So I can say from experience, this makes your life tolerable.
Good luck dear...and above all..hope you have a good day.
Neuralgia is nerve pain, neuropathy is damage to the nerves.
While your Dr. attended JH it does not imply a specialty in Sjogrens.
Is the Dr. wrong..
Unfortunately, as you are experiencing, nothing is cut in black and white.
The symptoms you are describing could be attributed to a number of other other issues beside Sjogrens, collectively or singularly.
The treatment .. first line for Sjogrens is basically pilocarpine and plaquinel.. and neither of those are going to adress the pain and gland problems, which are extremely tiring and wearing.
The pain needs to be managed so that your ability to provide for yourself through work and at home, as it is in jeopardy.
"My specialists have made me feel very much like i am on my own "
Tell them that!" Don't just feel it. And tell them them clearly that this is affecting the 'stability' of your work.
Is it the ENT who is sending you to the Oral Surgeon? Exam and to get X-rays of area for evaluation of teeth, bone, gums, etc. and Dx or opinion.
If Surgeon is not the answer.. be firm and ask "What is the next step.. and who does he recommend?"
State the degree of pain, effect on work and see if office can get you in with next specialist ASAP.
The other tests for Sjogrens are by IMMCO Diagnostics they do two different test.
If Rheum has done full panel, the one entailing bloodwork,you would have markers only done only.(approx $330 insurance covered in NYS check facts. )
Think I posted the code for markers in post somewhere:
https://sjogrensworld.org/index.php?topic=22714.msg257532#msg257532
website: http://www.immco.com/lab-services/test-services.aspx
Optho test should be there as well.
I wish you the best.. and hope you get relief. Try to rest as best you can.
I don't know if this is much help to you, but sometimes reading about another's experience will trigger something. Anyway, I'm in a similar situation to you.
I have random face pain that the ENT guy says is nerve damage from trauma--it feels alternately like I have a tooth ache (had all kinds of special dental exams to rule it out), stinging cheek, pain in eye, and so forth. I did get that part of my face smashed years ago by a horse, but the pain I'm having coincides with the onset of my AI symptoms. And I have noticed that when my mouth is most dry, I'm most likely to get the symptoms. ENT guy says that can go along with nerve damage. In my case, there is always a bad episode when I go from cold (outdoors) to warm (indoors). But it happens at other times, too. It's very painful for a while, then settles into an ache.
In my case, I am being treated for SS and the mouth dryness is manageable, so the fact that the docs aren't making the connection isn't critical at the moment. But I personally think there is a connection.
I hope you find answers!
Wow so much to process- thank you so much . My ENT has done a catscan , 360 xray and ultrasounds and says he sees nothing except for " enlarged blood vessel". My Rhuematologist told me she has no clue and when I told her i was at the end of my rope it was me who suggested going to an oral surgeon to make sure my ENT isnt missing something. I have put a call into an eye drs office asking about the new sjogrens test that seems available. I have decided to fire my rheumatologist. I am going to use your idea about hand carrying all these test results- very good idea. My drs are akk on the same computer system , yet they seem to never have the info they need . I hate to be awful but I am finding them lazy and uncaring , i went to them with a great attitude and high hopes and its been kinda a joke . I guess my best case scenario will be taking anti seizure med for the face pain and plaquenil for the Ss, which. 2 out of. 3 drs claim i have . I love this forum keep up the good work !
Yes, I had the scans, etc., and it didn't show much but a bit of congestion. ENT did offer gabapentin or lyrica, but at this point I would rather put up with it than take another drug. If it hurt constantly the way it hurts sometimes, that would be a different story.
I have read many articles recently about Neuropathy in Sjogrens's and they all say that Trigeminal Neuropathy can occur in Sjogren's. I am including links to 2 articles that are of interest. The second article is quite extensive and comprehensive and I find it to be an excellent article on Neuropathy in Sjogrens.
This is a quote from an article on Sjogren's World:
"Trigeminal sensory neuropathy can occur and may be characterized by progressive sensory complaints on the face. They are generally spontaneous and nonlancinating. They could start on one side and subsequently become bilateral. They may be progressive over months to years. Motor involvement of the fifth nerve (affecting chewing and jaw movements) is uncommon. There can be tissue destruction around the nostrils because of picking and scratching, corneal ulcerations, lingual ulcerations, and alteration of taste and smell. The lesion would be at the trigeminal ganglion. Other cranial nerves could be involved such as the second nerve which would cause optic neuritis."
http://www.sjogrensworld.org/mandel.htm
And another more extensive article says this:
"4.5. Trigeminal and Cranial Nerves Neuropathies"
"Often multiple and recurrent cranial nerves neuropathy may be present in pSS. The most common is trigeminal neuropathy, followed by facial and oculomotor nerves involvement [66, 67]. This trigeminal neuropathy presents sensory rather motor involvement. It involves generally the inferior branch of the trigeminal nerve and remains usually clinically unilateral.
Tajima et al. [68] reported the prevalence of trigeminal involvement as high as 50% of patients with cranial nerves compromise. Mori et al. found that 15 of 92 patients (16%) had trigeminal neuropathy with sensory impairment [11]. None presented motor trigeminal involvement. In Delalande serie [15], coclear-vestibular nerve involvement seems to be more frequent (35% of cranial nerve involvement) than trigeminal neuropathy (29%)."
http://www.hindawi.com/journals/ad/2012/645967/
I agree with the others that is would be a good idea to see a Neurologist, preferably a Neurologist who specializes in neurological problems associated with Auto-immune Disorders.
I also think that doctors can be wrong and often are. I seem to have found several that were wrong. I have since fired all of them. I now have an excellent team of competent and knowledgeable doctors and I am getting wonderful medical care and treatment.
Best of wishes to you. I hope you can get the care you need.
TracyRose, you are entitled to the protection of the FMLA if you are in the U.S. and your employer is covered under it.
Until things get under some control, be sure to get that. Also, you may have ADA protection as well.
Hang in there!
Sharon
TracyRose,
I was Dx at a Teaching Medical Hospital.
Later presented with even more debilitating Neuro symptoms, requiring for me (rare) ER visit, where a Neuro was called. The Neuro has been a major asset in managing severe symptoms with anti-seizure meds.
However, I had already had positive labs after crawling through hoops.
Rheum was, to use your words stumped by decline in ability, she was concerned...
Neruo symtoms overall are statistically a low incidence in Sjogrens. And depends upon what is being researched.
When you read studies re: Sjogrens and neuro.. those study cohorts have meet SJS criteria. Even then you read the words "may, can, etc, " present neuro symptom x,y.z..
If I have a glass of milk.. I cannot presume it is from cow nor today even mammal.
Not a great example but will do.
The neuro requested I keep a diary this was for insane migraine-type headaches, after stroke/cardio was rules out.
Looking up "Trigeminal_neuralgia" I see there may be triggers. So it may help a neuro in their investigation? Times of pain and intensity. See if there is a pattern.
Looking at TN, seaches show it in conjuction with Fibro (which can cause dry mouth.. I have a Dx of fibro..others here do as well) and there are other medical combos. So best to not assume a 'cow'.
I always tend to hope new folks do not have SJS.
Some SJS is very mild.. some severe.
In my heart I want them to have, if they are going to have something, a less possible systemic issue. Mine has been life altering and so for many here.
Should you decide to call a Neuro.. ask what the area of specialty is.. I once called a Dr. listed as a Neuroscientist and her area was sleep apnea. Wasn't going to help me.
Gabapentin and cymbalta are two meds that have helped me immensely.
Cymbalta 1st for years for limb pain.. later gabapentin was added by neuro (plus another med) when I came under his care.
I was taught to wean on them, increase doses at night and over weekends.
Here is a link with pictorial for gland massage..
http://www.sjogrens.org/files/brochures/Salivary_Glands_Massage.pdf
You can get into the habit of massage while watching the evening news, etc.
Please keep us posted.
An update- on my own I made an appt with an eye dr to see if they have the early detection test , going Monday! I guess I have given up on my rheumatologist. Onward and upward.
I am not sure why but my ENT talked about gabapentin and plaquenil but my rheumotologist seems to have said no . Thank you all for your help- i was weepy a lot of the week now I am mad lol, an improvement ?? :)
Anger is a great motiver.
Can exhaust you.. but, the weekend is here for rest. ;)
If you think or even suspect your eye doctor is not familiar with the IMMCO test.. (I am assuming that is the one you are going to do or whatever one you are thinking of..) go the diagnostic website and print out the relevant info to bring to appt.
Should you take the test.. could you post your experience?
The cost, was it covered by insurance, etc.. so it can help others.
Keep us updated. This is an early test .. studies have said plaquinel is most effective when started early. If on the other hand you show that you do not have the markers.. that is a powerful piece of knowledge as well, meaning energies will be re-directed.
ENT 'mentioned' gabapentin.. call ENT on the phone and request he call in the Rx to your pharmacy.
Pain is very tiring... and there is an event called the "pain loop", "pain cycle".
Should ENT call it in .. add effect/benefit to your symptoms diary. Dosage is not one-size fits all.
In you profile summary if you add your location some may have Drs. they can recommend to you. :)
My Rheumatologist finally decided to start me on the plaquenil! I am still having the eye appt and i will post about the bloodtest for sure! I am off to work, have a nice day everyone. They have hired a 22 year old who is probably my replacement. Help came too late for me regarding my job.