Thread by @NeuroSjogrens

@blaubeerblau2 @SjogrensForum Trigeminal small fiber made my face/teeth hurt. 2 yrs no dentist bc nerve pain in all upper teeth from bad nerves. IVIG cleared it up after 9 Mos. Only 1 tooth left w that bad bad pain. Xray showed cracked down thru root. But other non cracked teeth had hurt as bad. 1/n

@blaubeerblau2 @SjogrensForum All the facial/ear symptoms you described could also come from blocked inflamed sinuses & eustachian tube from thickened secretions. But trigeminal small fiber can create the same painful sensations. So ENT can clear you for sinus/eustachian tube issues. 2/n

@blaubeerblau2 @SjogrensForum 3/n How can you ✔️ if it's nerves? Trigeminal nerve has 3 branches. V1 = eyebrows to scalp back to ear level on top. V2=midface/upper teeth (I think re teeth) & V3 is lower face. These are skin distribution levels, but I felt the damage as it progressed backwards thru 3/n

@blaubeerblau2 @SjogrensForum 4/n my facial sinuses. Mine started at bridge of nose & gradually spread down to tip of nose & then in widening concentric circle on skin & in shape of expanding sphere back thru sinuses. Impacted teeth, then later tongue & later back of throat & corneas. 4/n

@blaubeerblau2 @SjogrensForum 5/n. It slowly & relentlessly progressed. Center was burned out & leading edge at times was horrific. Left me unable to wear glasses or contacts (bc poor corneal pain sensation.) Made it hard to eat in active irritative phase. Neurologists aren't taught this presentation. 5/n

@blaubeerblau2 @SjogrensForum 6/n How can I tell if my #Sjogrens facial pain is related to trigeminal neuropathy? Thinks to think about.
Scalp-have you had loss of pinprick sensation on top of head scalp back to level of ears? Doesn't feel as scratchy to fingernails or to pin dragged along scalp? 6/n

@blaubeerblau2 @SjogrensForum 7/n have you had an itchy scalp there, yet scalp looks normal? Do you scratch more? Does hairbrush feel diff there compared to back of head at hairline? Drag bristles forward from back hairline to forehead both sides. Does the character of sensation change as u do this? 7/n

@blaubeerblau2 @SjogrensForum 8/n if yes, document where & how different both sides. If it extends to forehead document that too.
-Midface/sinuses. Has your midface burned & flushed? Facial erythromelalgia can be V2 SFN. Think back. Have you had a change in your sneezing. In irritative phase 8/n

@blaubeerblau2 @SjogrensForum 9/n sneezes increase (frequency &/or # sneezes at a time. Can b confused w allergies out of the blue.) In burned out phase sneezes can ⬇️ or disappear altogether. Most of us don't notice a loss of sneezing until sneezes restart again (after treatment in my case.) 9/n

@blaubeerblau2 @SjogrensForum 10/n If pain extends back in face to sinuses in irritative phase wasabi/horseradish will be more painful in sinuses. In burned out phase u r less responsive to Wasabi effect (or not at all.) When pain/pinprick & temperature sensation fade gradually over face 10/n

@blaubeerblau2 @SjogrensForum 11/n the tests Neuros r taught to do won't pick it up. Sad but true. Try lightly dragging pin or fork tine from skin by nose out to side of face to in front of ear. Looking for a scratchy sensation (but care not to scratch skin.) Does sensation change as you drag to ear? 11/n

@blaubeerblau2 @SjogrensForum 12/n Document results on both sides as 2 where sensation changes. Can use ice cube too. Drag across face & note where cold & where not.
-nasal mucosal erectile tissues have autonomic small fiber control & can lead to unexplained episodes of nasal stuffiness. 12/n

@blaubeerblau2 @SjogrensForum 13/n V2 SFN can also alter nasal secretions. I lack sicca. At onset I had trace clear nasal discharge at hyper sneeze phase. When sneezes disappeared x 2 yrs I had no nasal secretions & no "boogers" which I only recognized when an obnoxious sensation in nose started 13/n

@blaubeerblau2 @SjogrensForum 14/n I realized I had a "booger." Made me realize I hadn't had a "booger" in yrs. Gradual & subtle changes can b difficult to identify until a surprise like this.
-V3/lower face SFN symptoms. Irritative phase: toothpaste burns more & hot/cold oral intake & teeth can hurt. 14/n

@blaubeerblau2 @SjogrensForum 15/n Ice cream headaches can increase in intensity & duration during irritative & disappear altogether in burnt out phase.
-Changes in taste? pH gets altered. Affects sour & vinegar sense. Tomato soup tasted flat (like Spagghetios.)
-oral sensory changes: in burnt out phase15/n

@blaubeerblau2 @SjogrensForum 16/n I thought my electric toothbrush was tired bc I couldn't feel the good feeling of bristles on gums. Poor spouse bought 2 more boxes e toothbrushes b4 I realized it was my gum sensation not working. I also felt my food wasn't warm enough in burnt out phase. 16/n

@blaubeerblau2 @SjogrensForum 17/n I began to put coffee & food into microwave to heat only to get bad coppery taste I could not get rid of. Took pic of roof of mouth & found large painless burn covering palate. ENT said burns can occur at 135F & to ✔️ food temp b4 consume. 2b safe don't exceed 125F 17/n

@blaubeerblau2 @SjogrensForum 18/n I already discussed the ⬆️ tooth pain (upper teeth 4 me) which improved somewhat in transition from irritative phase to burnt out phase & resolved after 9 Mos IVIG. At 1st I thought I had dental probs. Later realized it was the nerves.
18/n

@blaubeerblau2 @SjogrensForum 19/n In oral burnt out phase I developed hot pepper superpowers. I can eat any hot pepper known to mankind. I can taste the flavors but I experience no pain. I also don't turn red, sweat or have nasal discharge when eating hot peppers. 19/n

@blaubeerblau2 @SjogrensForum 20/n. If you have this superpower it is good to take a break from peppers for 3-4 Mos to test to see if sensitivity to pepper/capsicum pain returns bc if eat 🌶 constantly your nerves cringe back & tolerance to heat can develop in folks w normal nerve function. 20/n

@blaubeerblau2 @SjogrensForum 21/n. Unfortunately these descriptions do not exist in Neuro texts/literature & aren't taught in Neuro training so Neuros won't likely know any of this if you complain about it. & usually Neuros only compare small fiber from side to side in V1 V2 & V3 21/n

@blaubeerblau2 @SjogrensForum 22/n which will miss a bilateral small fiber deficit. I told them I could tell the pinprick end felt "smaller" than the dull end of safety pin but it didn't feel sharp or pricky. Neuros documented as "normal." Also, if you've had this problem for a while a thing called 22/n

@blaubeerblau2 @SjogrensForum 23/n Central sensitization can occur. This means your brainstem & brain have learned to process pain signals differently. It may confuse your small fiber sensory exam as you may feel "afterpricks" from a single prick. So as your Neuro moves on to new prices at a diff spot 23/n

@blaubeerblau2 @SjogrensForum 24/n you may still be feeling extra pricks at 1st places they tested. Basically it confuses both your brain and your Neuro who won't understand why you have weird ongoing sensations for a min or 2 after they stop. When they don't know about this facet of Central 24/n

@blaubeerblau2 @SjogrensForum 25/n Sensitization, or about Trigeminal nerve pure small fiber neuropathy, they may consider you a psych case & it will hinder your diagnosis & treatment. The ONLY reason mine got treated is #Sjogrens gifted me with weakness & loss of motor nerves in al limbs & bilateral 25/n

@blaubeerblau2 @SjogrensForum 26/n trunk as seen on EMG so IVIG cum SCIG (Hizentra) was prescribed. It immediately helped the weakness but took 9 Mos to stop the heinous facial pain & restore a modicum of protective sensation so I'm less apt to burn my mouth now. I can wear glasses now.

@blaubeerblau2 @SjogrensForum 27/n Note, if you eat a lot of 🌶 but don't feel any heat with BM's it means you've got more small fiber damage than you thought. Something you are more apt to notice if the sensation returns than you are to notice as it gradually wanes away. Most people don't know how 27/n

@blaubeerblau2 @SjogrensForum 28/n to put all these odd strange symptoms together in a way it makes sense to Neuros. Fear not. Even when I do put it together correctly & present it on a platter to Neuros they STILL don't "get it." So it's not your error when the Neuros don't understand. 28/n

@blaubeerblau2 @SjogrensForum 29/n It's not really the Neuros fault either bc they are not exposed to this condition & can't really look it up anywhere.
*I still do NOT have a diagnosis of trigeminal small fiber on my chart tho I had full blown version & ENT saw the burns & Ophtho determined corneal pain ⬇️🧵

@blaubeerblau2 @SjogrensForum 30/n. I've offered to teach Neuro residencies about this, have offered 2b a Grand Rounds patient & have looked to get my case written up bc trigeminal is common in #Sjogrens & Neuros r simply unaware how to elicit the history, what history to look for and how to do the exam. 30/n

@blaubeerblau2 @SjogrensForum 31/n MD's put more stock in tests anymore & the art of the history & physical exam is fading as fast as the "gray hairs"/old great examiners retire. To date the only tests available are not being used (tho history & exam ought be the "gold standard" until tests r available 31/n

@blaubeerblau2 @SjogrensForum 32/n In the same way EMG/NCS cannot detect small fiber, a "blink test" cannot detect small fiber in trigeminal nerves. You expect it 2b negative in trigeminal SFN. Neuros often forget this & if negative disregard your symptoms or think its psych. If you get one who thinks 32/n

@blaubeerblau2 @SjogrensForum 33/n about it & puts it together you have won the lottery. I was gifted corneal confocal microscopy/CCM by head of Optho (shows SFN in corneal nerves.) Did it B4 IVIG in hopes I could get f/u CCM post IVIG treatment to document improvement. 2 date no center will read my CCM.🧵

@blaubeerblau2 @SjogrensForum 34/n the only other research test used to date to test for this was tongue biopsy (ouch!) For small fiber nerve counts. Laser evoked potentials could be used but I see no one looking at this & would still need validation & normal values before it can be tested. 34/n

@blaubeerblau2 @SjogrensForum 35/n Of interest, old neuro textbooks had a diagnosis "atypical facial pain." It was more common in menopausal females (like #Sjogrens) & was often taught as older women with psych issues. Headache (which includes face) conferences do not cover this issue or #Sjogrens. 35/n

@blaubeerblau2 @SjogrensForum 36/n I'm sorry you have facial/dental pain. I hope your is sinus disease & not facial neuropathy. It is v rare to find an MD who will rx nerve sparing therapy for what can be an exquisitely painful life affecting problem. Otherwise there is only symptom control rx 36/n

@blaubeerblau2 @SjogrensForum 37/n which do not her for your nerves while they just accrue more damage. Puts one in strange spot to hope for motor weakness so it will be taken seriously enough to treat w nerve sparing therapies. Small fiber damage gets no respect for how debilitating they can be. 37/n

@blaubeerblau2 @SjogrensForum 38/n Heads up, if you've got trigeminal small fiber you are at higher risk for small fiber on all your skin & mucous membranes as well as autonomic neuropathybqhich is small fiber neuropathy of your automatic pilot homeostasis nerves. I.e neuropathies of all your organs. 38/n

@blaubeerblau2 @SjogrensForum 39/n Sorry 2b bearer of not so good news. Thanks for the opportunity to put this thread out. I wish you well.
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