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.
This is how I feel every time I see a rheumatologist. At least in the US, rheumatologists do not want to offer any treatment unless you have the traditional antibodies and this leaves a lot of us with Sjogren’s and Neuropathies out.
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
I ate 4 tins of sardines a day for a week and I now don't have dry eyes any more and my mouth is no longer dry. I eat sardines about 3 x week now to maintain the tears and saliva. What the body needs is Vitamin A. Not beta-carotene. But real, animal based, Vitamin A. And the omega 3s. I also massage the salivary glands and tear ducts. Vitamin D status is also important. Vitamin D is an immune modulator and adequate Vitamin D levels are crucial to control auto-immune conditions. Check your Vitamin D levels! But the sardines, man that was miraculous! Oh, and I was diagnosed about 25 years ago and only just figured this out this year.
I was recently diagnosed with Small Fiber Neuropathy. I have SLE Lupus & Sjögren’s (taking plaquinil). I had horrible full body itch (no rash) for years but recent low dose daily steroid and daily Benadryl stopped it 99%. I don’t cry and my throat is always dry. I’m grateful for the meds. Oh, I also take gabapentin and some anti anxiety meds. Also the past few months a multivitamin (low dose ) which stopped my hair from falling out and the Boh’s lines in my nails to grow out. And aerobic exercising about 60 to 90 minutes per day has stopped much of my body pain.
I was just diagnosed with small fiber neuropathy. I don’t have a diagnosis of sjogrens, but I’ve developed dry eyes, mouth, nose at night. My tongue is stuck to the roof of my mouth and it’s like cardboard in the morning. I can’t open my eyes till I put eye drops in the corners. The dry noise actually wakes me up it’s so uncomfortable. Eye doctor said oh that’s common. PCP treats each little thing separately. It’s pretty miserable. Good luck with your treatments!
@@lianagilbert4112 What’s PCP ? Well, you’re going to have to drink a lot more water. Like a half gallon a day to keep those membranes from getting so dry. My doc wanted me to do a full gallon, but I just couldn’t get it down, too much. My nostrils would burn, so dry. And this light aerobic exercise that I do pretty much every day creates sweat and clears out toxins and muck, it’s been a life changer. I do the mini trampoline so I don’t have to leave the house. Just sashay to some music you like, see if it helps.
Excellent overview of Sjogren’s along with neuropathies! I have struggled with both just like my mother and grandmother before me. My grandmother had the symptoms of small fiber neuropathy and autonomic neuropathy. My mother did not have autonomic neuropathy and she did better than my grandmother and me. We also have a genetic muscular dystrophy to make things extra complicated.
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.
Imagine my shock when yesterday the rheumatologist's office called to tell my test results looked very good and that I didn't need to come back in. I tested positive for Sjogren's!!! Apparently they've never heard of it.
Well, even if they are familiar with Sjogren’s, all they typically know is that it can cause dry eyes and mouth so the disease is not even taken seriously.
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.
I have an extremely itch for two and a half years I have myself so naked up anything I get from the drs. does not help. .The best I have found that gives me some relief is Frankincense Is this itch caused by sjogrens which I have
A rheumatologist usually gives a diagnosis of SS and treats but recently I listened to a neurologist on RUclips 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!
@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.
@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?!😂
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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.
Exactly this! And they see you as a basket case.
This is how I feel every time I see a rheumatologist. At least in the US, rheumatologists do not want to offer any treatment unless you have the traditional antibodies and this leaves a lot of us with Sjogren’s and Neuropathies out.
@@rebeccabrown5014 But lab values do not correlate with the severity of symptoms. The relevant test is a biopsy of the inner lip mucous membrane!
Excellent presentation. Thank you so much Dr Alunno.
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
I ate 4 tins of sardines a day for a week and I now don't have dry eyes any more and my mouth is no longer dry. I eat sardines about 3 x week now to maintain the tears and saliva. What the body needs is Vitamin A. Not beta-carotene. But real, animal based, Vitamin A. And the omega 3s.
I also massage the salivary glands and tear ducts.
Vitamin D status is also important. Vitamin D is an immune modulator and adequate Vitamin D levels are crucial to control auto-immune conditions. Check your Vitamin D levels!
But the sardines, man that was miraculous!
Oh, and I was diagnosed about 25 years ago and only just figured this out this year.
I was recently diagnosed with Small Fiber Neuropathy. I have SLE Lupus & Sjögren’s (taking plaquinil). I had horrible full body itch (no rash) for years but recent low dose daily steroid and daily Benadryl stopped it 99%. I don’t cry and my throat is always dry. I’m grateful for the meds. Oh, I also take gabapentin and some anti anxiety meds. Also the past few months a multivitamin (low dose ) which stopped my hair from falling out and the Boh’s lines in my nails to grow out. And aerobic exercising about 60 to 90 minutes per day has stopped much of my body pain.
I was just diagnosed with small fiber neuropathy. I don’t have a diagnosis of sjogrens, but I’ve developed dry eyes, mouth, nose at night. My tongue is stuck to the roof of my mouth and it’s like cardboard in the morning. I can’t open my eyes till I put eye drops in the corners. The dry noise actually wakes me up it’s so uncomfortable. Eye doctor said oh that’s common. PCP treats each little thing separately. It’s pretty miserable. Good luck with your treatments!
@@lianagilbert4112 What’s PCP ? Well, you’re going to have to drink a lot more water. Like a half gallon a day to keep those membranes from getting so dry. My doc wanted me to do a full gallon, but I just couldn’t get it down, too much. My nostrils would burn, so dry. And this light aerobic exercise that I do pretty much every day creates sweat and clears out toxins and muck, it’s been a life changer. I do the mini trampoline so I don’t have to leave the house. Just sashay to some music you like, see if it helps.
@@stlounsbury PCP-- Primary Care provider
Excellent overview of Sjogren’s along with neuropathies! I have struggled with both just like my mother and grandmother before me. My grandmother had the symptoms of small fiber neuropathy and autonomic neuropathy. My mother did not have autonomic neuropathy and she did better than my grandmother and me. We also have a genetic muscular dystrophy to make things extra complicated.
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.
Imagine my shock when yesterday the rheumatologist's office called to tell my test results looked very good and that I didn't need to come back in. I tested positive for Sjogren's!!! Apparently they've never heard of it.
How very sad! The good side of this is you know not to ever waste your time with THAT dr. again!
Well, even if they are familiar with Sjogren’s, all they typically know is that it can cause dry eyes and mouth so the disease is not even taken seriously.
Wow!😮
Very informative!! Thank you !
Last week, I was after 5 years of chonic pain, been diagnosed with Sjogren, Fibromyalgie, and arthrose.
What's your Vitamin D status?
Rituximab could work for small fiber neuropathy/dysautonomia aused by Sjogrens? I will probably try asap.
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.
How are you now ?
Wow this is interesting, thank you for sharing.
I am not hearing impaired but found the volume on this video low - had to strain to hear. I am not having any problem with other RUclips videos.
i think the doctor has a soft voice but the volume should be risen accordingly
Yes I turned volume up full too, straining to hear:(
Thank you !
Well explained thank you!
The QR code does not work. Can you give an URL instead? I would like to take the survey.
I have an extremely itch for two and a half years I have myself so naked up anything I get from the drs. does not help. .The best I have found that gives me some relief is Frankincense Is this itch caused by sjogrens which I have
I live in NW FL. WHO OR WHAT KINDA MD DO I NEED TO SEE
A rheumatologist.
A rheumatologist usually gives a diagnosis of SS and treats but recently I listened to a neurologist on RUclips 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!
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Türkçe alt yazı lütfen.
Is there any treatment or medication for sjogren
Find a Functional Medical Doctor, they can help. No drugs.
It's an autoimmune disease. Check that out.
Coimbra protocol
@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.
Usually something like Plaquenil or an immunosuppressant like Methotrexate.
Data analysis will be performed Dec 2023 ?
It's lyme disease and co infections
@tamiwigginton7137 Lyme disease is caused by a virus. So isn't. It's a different disease. Do you know better than a rheumatologist?
@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?!😂
@@tamiwigginton7137 You are incorrect. There are tests for this disease.
@@denisewhite6237 exactly!
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