I cannot get diagnosed. Positive ANA HEP-2 SPECKLING + STAINING, negative SSA + SSB. PAROTID GLAND swelling with chronic dry eyes and minimal saliva. Pain and fatigue is nearly unbearable. Uk Gps have no idea, I will probably end up with a lymphoma as I've already been trying to get diagnosis for 5 years. Lupus, SS suspected, also OA as well as B12 deficiency.
These symptoms are a worry for me as I have been diagnosed with hemiplegic migraines + meniers and FND a whole mix of labels yet no help yet all my symptoms are what the good Dr here described
Because that is the biggest cause for autoimmune now days!! It just has a fancy name for it instead of lyme disease.....lupus, m.s. R. Arthritis , And the other 70 autoimmune deases we have!! Including dementia, Parkinson and alztimers!!
@tamiwigginton7137 Lyme disease is not the same as Sjogren. Lyme disease is caused by a bit of a tic. Borreliose. You aren't teaching rheumatologists what this disease is or are you?!😂
I wish my doctors would watch this video because they have no idea or clue about the neurological issues its always dry eyes dry mouth that is all they think is going on This has to be the most misunderstood condition in medicine
Agree seems researchers understand but general rheumatologists have poor awareness in fact neurologists would be better being involved if you have autonomic dysfunction
A rheumatologist usually gives a diagnosis of SS and treats but recently I listened to a neurologist on RU-vid that says SS is a neurological disease and when he diagnoses a SS patient he treats them and does not send them to a rheumatologist. So possibly a neurologist that is experienced with Sjogren's Syndrome. I have also worked with a Functional Medicine doctor which has been a life saver. They do not diagnose SS but help to find the root cause of symptoms. In the past I've had migraines, seizures and neuropathy. I'm honestly not sure what I did that I no longer have seizures or migraines but the neuropathy I had for decades disappeared when I started taking Alpha Lipoic Acid (ALA) and N Acetyl Cysteine (NAC). Good Luck!
Just found this channel-I have RA, PsA, and SS though I’m not sure my rheum has officially diagnosed me with SS. I’ve had horrible dry eye and mouth for 10 years and manage to function, but the fatigue is awful. I don’t have the weight loss 😂
I’m RA patient now on Methotrexate and long term steroids for autoimmune disease. I found this interesting because I have neuropathy in my legs. Also dry eyes and mouth and sometimes Reynaulds in my fingers and chilblains on my toes but not as bad as it used to be before meds. It does seem to be some overlap RA and SG. and as you say meds don’t always work or have undesirable side effects 🙄so learning to live with unsteadiness and numbing legs is probably best. I found this vid very interesting thankyou for posting. UK
Overlap of Sjogrens and Lupus as well. I have SLE and I am quite sure I also have Sjogrens. As a matter of fact, they actually come in 3s quite often. I am on Methotrexate for my SLE and Prednisone. I just started treatment but so far out of my million symptoms its only helped my hip pain and fatigue somewhat.
Thank you, especially for the reflection at the end! With diffuse symptoms without apparent cause, in my case over decades without a diagnosis, you end up leaving a doctor's office feeling like a neurotic hypochondriac.
@tessmoore3762 I don't have the money at the moment for a FM doctor, but when I do that's where I'll spend it. I've seen them in the past. Would you share with us what your FM doctor suggest you do? This might help me and others in the interim.
I just watched the Webinar from a year ago. There was mention of a booklet coming out last July by Sjogrens Europe on coping with the disease. Does anyone know how to find the booklet?
Ich habe sehr hohe Sjögren- und Rheumatypische Antikörper und fühle mich sehr antriebslos und geschwächt. Da ich aber keine Entzündungswerte im Blut habe, erklären mich die Rheumatologen für gesund 😢.
This is so interesting, although I don't understand all of it. When I had my first child 40 yrs ago something changed. Only about ten yrs ago I was diagnosed with Hashimotos Disease, but even with thyroid hormones I've never felt better. I'm wondering if I I now have Sjogrens. I have all these symptoms, but the fatigue is by far the worst. So far my testing is negative.😊
No, I don't have Sjogrens, just low ferritin. That explains everything. I cannot believe how all these doctors that I've seen did not suggest looking into this. It's easily treatable with iron supplements.
Treatment for primary Sjogren's syndrome with the B-cell depleting antibody rituximab (Rituxan) failed to provide statistically significant improvements, despite the increasing evidence for B cells in the pathogenesis of this disorder, French researchers reported.
Has anyone looked for cerebral hypoperfusion in Sjögren’s syndrome? It seems like this is being identified more and more in chronic and auto-immune conditions.
The most common topic for lupus or SS patients discussed and desperate for answers and help. I watched to the end, wonderful interview. Not many info out there talking about the topic in this level. Thank you so much ❤
