Neuro damage is prominent in Sjogrens. NeuroSjogrens/Sjogrens/chronic illness info posted. Advocacy, not med advice. Also NeuroSjogrens on https://t.co/ZjfoHK7gz4
Dec 3, 2023 • 28 tweets • 4 min read
A 🧵 re Why doctors/researchers fail to identify most of the neurologic involvement in Sjogrens. Most doctors are not being taught how to identify it & often 1st line Neurologic tests can appear unremarkable & 2nd line tests (which can detect it) are infrequently pursued.
Most MD's r unfamiliar w the autonomic nervous system, what signs/symptoms indicate abnormal autonomic function & how 2 test 4 it. Autonomic testing is difficult to obtain 4 most organs/tissues. If MD's are familiar they often only consider cardiovascular autonomic neuropathies
Nov 7, 2023 • 23 tweets • 4 min read
@NGrandvaux @SarahSchaferMD @Dysautonomia We've all heard of nerves that control our muscles & allow us to feel sensations. But how many know about the nerves that keep our cells & organs functioning properly? Nerves that regulate where blood flows, body temperature, digestion, sugar balance & more. 🧵
@NGrandvaux @SarahSchaferMD @Dysautonomia Our bodies have an "automatic pilot" nervous system that keeps our body finely tuned despite external & internal changes the same way a thermostat on your heating & AC keeps your house temperature within a range. This system is called the autonomic nervous system &
Apr 29, 2023 • 22 tweets • 4 min read
Great thread by Dr. Hutto. IMO we have much more NeuroSjogrens than is documented bc studies often fail to incorporate all types of neuro damage/syndromes which are higher in Sjogrens than in controls. Like the blind men & the elephant metaphor, if a study only looks 1/
2. at the prevalence of the trunk & the tail of the elephant, they will underestimate the size of the elephant. There are no landscape studies looking at all the most common NeuroSjogrens issues.
💎 To truly assess dysautonomia in Sjogrens many tests r required above & beyond 2/
Apr 4, 2023 • 7 tweets • 2 min read
Infusing immunoglobulins while reading a study describing a lot of autoantibodies in long covid patients...🤔
2. Recognizing there are at least 2 incentives working for plasma donation in long covid. i) plasmaphersis removes autoantibodies ii) many w long covid lose work capacity &/or spend a lot on efforts 2b better. Plasmaphersis harvests pooled plasma. Incl pooled plasma
Mar 26, 2023 • 40 tweets • 30 min read
@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
Mar 3, 2023 • 18 tweets • 17 min read
@blakewarner0@SarahSchaferMD@buckleydebbie Sorry I wasn't clear. - msgb doesn't remove a diagnosis. It closes MD's minds to the possibility of a diagnosis. SSA, mgsb, Schirmers, OSS, measured saliva, salivary ultrasound are ALL nonspecific & not sensitive. This is a bad way to create criteria for a disease. 🧵1/n
@blakewarner0@SarahSchaferMD@buckleydebbie 2. For most systemic medical diseases diagnosis is made by a constellation of signs & symptoms from all the systems commonly involved, not focusing on one bit (like salivary/lacrimal glands) to the exclusion of all others organs that are classic damage patterns for a disease...
#Dysautonomia damages ur body's automatic pilot (AP) system that controls where blood goes, how food processes/moves, temperature & glucose regulation, BP, HR,sweating etc. W AP damage there is no homeostasis, no "static" issues. Problems shift & change & r unpredictable.
#Sjogrens commonly has #AutonomicNeuropathy. Most patients have lost the ability to predict how one feels day 2 day. Hr to hr. Even minute to minute sometimes. The days of predictable baseline function are gone for many #NeuroSjogrens patients.
Nov 19, 2022 • 18 tweets • 22 min read
@gurdeep_dulay@buckleydebbie@SarahSchaferMD@SjogrensForum@MdStens History items to eval for trigeminal small fiber include change in taste (pH, loss of pain w/ hot peppers.) In irritative phase sneeze frequency & # sneezes at a time & trace nasal discharge can increase. In burned out phase sneezes & nasal secretions can stop. 1/n@gurdeep_dulay@buckleydebbie@SarahSchaferMD@SjogrensForum@MdStens 2/n I noticed in my case most small fiber presentation has an irritative phase (IP) (positive findings of increased nerve activity) followed by a loss of function phase burned out (BO) phase (loss of small fiber sensibilities.) During IO ice cream headaches can ⬆️ 2/n
Nov 17, 2022 • 9 tweets • 3 min read
Low dose interleukin 2 Sjogren's double blind RCT
showed impressive changes in Sjogrens. Beneficial alterations in pain, fatigue, sicca, ILD pulm tests, leukopenia, thrombocytopenia favorable shift in immune profiles [Treg's, Breg's] & more. I'd try it!
Sjogrens can cause acute, subacute & chronic polyradiculopathy as seen in this report. MD's need to learn about SSEP testing when routine nerve conduction studies are normal or they might miss this diagnosis which comes in motor, sensory or both.
Sjogrens polyradiculitis can present in a pure motor form which can mimic ALS/Lou Gherig's disease. synapse.koreamed.org/articles/11212…
Oct 9, 2022 • 10 tweets • 4 min read
@AbrahamAubry Thread: Most DMARDS used in Sjogren's are those which have shown efficacy in related diseases and are off label uses. In part because Sjogren's gets so little research attention & systemic aspects of Sjogren's are seldom emphasized as much as sicca. 1/n@AbrahamAubry 2/n In regards to NeuroSj use of classification criteria as selection criteria in studies excludes close to half of NeurSj patients. Even w/ limitations noted one can find smaller studies on DMARDS in Sjogrens. Here is a list of DMARDS: 1.hydroxychloroquine/chloroquine 2/n
Oct 6, 2022 • 6 tweets • 4 min read
@TwylaHoney@SarahSchaferMD 1/n Some neurologic disorders in Sjogren's:
1)Neuropathies (small fiber skin & autonomic,small & large fiber sensory ganglionopathies, CIDP "like" relapsing weakness/CISMP, both demyelinating & axonal) 2) Cranial neuropathies (trigeminal small fiber ganglionopathies, 1/n@TwylaHoney@SarahSchaferMD 2/n trigeminal & glossopharyngeal neuralgia, burning mouth/tongue syndrome. 3) CNS (cognitive dysfunction, alterations in white matter/MS mimic, aseptic meningitis, Orthostatic cerebral hypoperfusion syndrome, NMOSD disorders-optic neuritis & transverse myelitis. 2/3
Oct 2, 2022 • 10 tweets • 6 min read
@elisa_comer@Breanna34652334 Kismet! Sjogren's patients complain of scalp itching. Often it is related to dryness. My scalp itching was trigeminal small fiber b/c when I dragged the pin from back to front the change occurred @ imaginary line bt my ears at top. 1/n@elisa_comer@Breanna34652334 Later midline facial pain so severe I couldn't wear glasses began. Then into upper teeth & tongue. All trigeminal small fiber. I was trying contacts so I could see when I realized I hadn't rinsed cayenne pepper off my fingertips. I felt no pain in the eye, just the powder 2/n
Sep 30, 2022 • 11 tweets • 3 min read
CISMP- chronic inflammatory sensorimotor polyradiculitis is an immune mediated form of CIDP that is restricted to the spinal nerve roots & not the peripheral nerves. It presents the similar to CIDP & can respond to IVIG. SSEP's, not NCS, are needed to diagnose CISMP.
Do you get flares of weakness in your legs, progressing over wks where you catch your toes & get weakness in your thighs? + strange feelings in your legs at same time? Neurologists will look for low reflexes & ✔ EMG/NCS. When NCS are normal usu thay say it's not CIDP. 2/n
