Sjogren's Question

@j77
It has been over a year since you have posted anywhere here, and I'm hoping things have gotten better for you. I have many diagnoses, some similar to you.

Hello! The specialists are still trying to figure it out, but my test for AAG did come back elevated which would explain my severe autonomic issues the first two years. I still have alot of autonomic issues.but not like the first year. I guess that must of been an autonomic crash brought on by covid/iron infusion and probably years of heavy periods/Anemia. My ANA keeps on going up, but not super high. I just have a positive speckled pattern of 1.180. I did have an abnormal shirmers eye test where the Doctor suspected Sjogrens right away, but of course my sjogrens blood work and lip biopsy were normal. I do believe I have NeuroSjogren's though which can cause the autonomic symptoms, small fiber neuropathy, the collapsed torso feeling and effect your cranial nerves which would explain my lack of gag reflex . I think a combo of AAG, SFN, Neurosjogren's or Long Covid can bring that on. I have not been tested for SFN yet and I have not had a muscle biopsy yet. I am meeting with a NeuroLupus Doctor soon. I guess Lupus could be involved too, but I feel like my symptoms match up more with NeuroSjogren's. The symptoms I have had since I was younger were probably early signs like the severe bleeding gums, but never a cavity, weaker upper arms with repetitive movements, weaker diaphram, severe exhaustion, weaker smile. I thought alot of these symptoms were just from my thyroid disease my whole life. I did get tested for Myasthenia Gravis and Lambert Eaton Syndrome, but those tests came back negative. I do have the Neuromuscular junction fatigue, but I think it may be the Neurosjogrens mimicking MG and LEMS. Autoimmune Diseases are so difficult to figure out because they are all so similar and if you are seronegative it makes it so difficult for the Doctors to figure it out and to get treatment. Overlapping diseases are tricky for them too. When I was at my worse low dose steroids got me out of being bedbound for over a year and able to eat actual solid food again. I feel like that is such an important clue. What symptoms do you have that are similar? What tests have you had so far?

@j77
I believe you know exactly what you are talking about, no matter how the Western Med Prof looks at you. But you most likely had this autoimmune, then COVID attacked you and really brought it to the surface.
I have such a long story I couldn't begin to tell you about my Long COVID beginning in late '23, just now been told, COPD. I believe I've always had an autoimmune, Sjogren's, misdiagnosed in the '80s by a Rheumatologist, telling me I had Lupus/ Arthritis. (Often a false positive Dx. )
I have now been diagnosed by pulmonology test and a Pulmonologist who refuses to believe in LONG COVID, they're determined I have COPD, suddenly developed months after COVID.
no lung or smoking or other relative Hx.

Oh My Goodness! I am so sorry for what you are going through as well. I am praying for you. It has been quite the journey. You really have to be a detective and figure it out yourself moat of the time. I honestly thought my lungs were involved too at first because of my breathing issues especially laying down. I noticed I have severe air hunger laying down. My pulmonary tests came back o.k., but what I think it is that either covid or Autoimmune attacked my phrenic nerve/Diaphram so when I lay down my belly is not insync with my belly. It is almost like my belly is doing all of the work. The Physical Therapists knew so much more about this than the Neurologists. I honestly believe Physical Therapists see weirder cases than Neurologists so they sometimes understand the whole body better. I just think Covid is basically like a Tornado going through the body with all of the destruction it does. Bringing out underlying autoimmune, dormant viruses, etc. I honestly did not think I was going to make it the first year because I had lost so much weight. I was in such good shape it is wild how things can happen so fast. I sometimes wonder if all of the exercise in the sun/warmer weather contributed too. I noticed on the Long Covid sites most of the people were athletes. I think in many cases including mine it is possible I had covid at first and did not know what was wrong and kept on exercising and kept pushing through which just made things worse. I will be forever grateful to my Primary who believed me and had a hunch that autoimmune was involved some how. My heart goes out to anyone that is going through something similar with no solid answers. I would just say never give up and just find someone that believes you and is willing to help.

Does anyone have trouble with dry mouth, dry eyes, dry skin, dry Virginia and constipation.i believe I have something in my system that is taking most of my liquids away and it feels like it goes right through me.i was tested for Sjögren but came back negative. Every time I search it comes up with Sjogren.im at a lost as what else to do.any advice would be greatly appreciated.

@issy58
Hi,
Hi, I experience similar problems, but only occasionally—usually when my sodium levels are low. In my case, this is related to aldosteronism, a kidney issue, and adrenal insufficiency. Besides taking hydrocortisone, I don’t use additional medication; instead, I use pretzel sticks with ocean salt to help restore my sodium balance.

This all started when i hit menopause 12 years ago it gradually. It started with dry scalp then a few years after chronic dry eyes then years after dry Virginia, now just last year chronic dry mouth and throat, i have just adout tried everything i can fine. I don't smoke anymore, its been 12 year since i quit.i can handle all the other dryness but the dry mouth n throat i cant plus i get canker scores on my tongue, its not the medicine as far as i know, do you think its dehydration?. I drink 80 oz of water every day. I even tried liquid iv, sometimes even water drys out my mouth,thank you for replying

@issy58 I have the same problems. I have been diagnosed with lichen planus in my mouth and scalp. Also, dry eye syndrome which is treated with Restasis. You likely need a few specific specialists to look into individual symptoms and hopefully get some help. I have several autoimmune conditions and these Seronegative results make diagnosis very challenging.

@gypsyblue thank you 🙏

@issy58
I have Sjogren's with peripheral and autonomic neuropathy and experience the dry eyes, mouth, and skin. There are drugs that may help. I took 5mg/day of pilocarpine for a couple years and recently switched to 30mg/day of cevimeline. In my experience, they do seem to help a little. The pilocarpine caused me to sweat profusely for 15-20 minutes about an hour after taking it, thus the switch to cevimeline. I haven't noticed any other side effects. Although the palliative effect of these drugs has not been dramatic for me, maybe others have a different experience. And maybe just a little better is a good thing.