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.
Keep trying! I was told it was a vestibular migraine disorder. I have both neuro sjorgens and/or CIDP. I was dismissed for a long time until I basically lost my ability to speak swallow and walk. Finally got IVIG. Even a year later doctors dismiss me because I have been getting better
I totally agree. My symptoms have been worse over last almost 5 years since 1st lot of Covid. Worse over the last year. I get up. 1-6 times a night to drink water as my mouth is stuck together. The anxiety and panic attacks are awful long with a myriad of problems. I’ve been ignored. Now I’m going to ask my GP to test for sjogrens
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.
This is excellent information. Thank you. I have seronegative rheumatoid arthritis diagnosed about 2 1/2 years ago. In the last few years I’ve also noticed neurological symptoms - weird tingling in my legs, sometimes in my head. I’ve felt like they are neurological reactions but I couldn’t determine the triggers. Sometimes it’s just when I lay down and relax. Sometimes in the middle of a conversation and sometimes when I’m commenting on youtube vidoes (lol). My mother had an autoimmune disease that was not diagnosed. She died of kidney failure that came on very suddenly and I suspected systemic sclerosis. My ANA is positive with a titer of 1:80 but the tiered analysis doesn’t show anything in my blood. My eyes have had increased dryness over the past few years and recently my mouth feelsl very strange and agitated with a agitated feeling on the inside of the cheeks and my front lip that gets worse as the day wears on. My body can not tolerate methotrexate (liver toxicity). I have been paying close attention to my glucose (wearing a CGM) and my food intake and lifestyle to determine if there is anything that I can do to manage all of these symptoms. Eating lower carb, lean meats, fish and vegetables and avoiding high glycemic foods has helped my pain and inflammation. The more I learn, the more I realize how little is known about how to deal with autoimmune disease and there is so much overlap, I’m not sure the current classifications are very accurate. Part of me wants to try to find a doctor to get a diagnosis but that will entail a lot of research trying to find someone who really wants to figure it out (not my rheumatologist) and not look at me like I’m crazy. If I do pursue it, I could spend a lot of money getting a “guess” at a diagnosis and then will be told to use eye drops, dry mouth remedies, and then take steroids or an expensive biologic... I’m not sure it’s worth the effort. Instead - I’m going to continue my path of detailed tracking of my lifestyle and use AI to help analyze my data and determine what affects me in a negative way and what seems to have a positive impact. I’ve been medication free for the last 18 months and hope that I can stay that way. Sorry for the long comment - I’m hoping that sharing information helps someone else out there.
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.
I just got diagnosed with small fiber neuropathy in September by a neurologist. My symptoms started 4 days after 2 steroid injections done in my wrist for carpel tunnel. That was done by a pain management doctor in April in NJ. I went to a 2nd pain management doctor in Princeton NJ for a second opinion after neuropathy symptoms started and after he did an EMG test on my legs feet and spine he told me to go see a neurologist. She diagnosed me with Small Fiber neuropathy. I told all 3 doctors including the doctors’s office who gave me steroids that the steroids most likely did this to me and they all said no. That’s a lie. I got numbness and pain in my foot and leg 4 days after my steroid injections. I did my own research online and medications can cause neuropathy. Of course it was the poison injections that damaged my nerves. He’s an awful and greedy doctor. I wish I refused the steroids that day in April. I’m so angry at this doctor. I’m so upset 😢
@ I’m really sorry you are going through this. It took a long time for me to find the right doctors. For me, low dose steroids are necessary to fight the agony my illnesses cause. For the small fiber neuropathy, I take 1/2 mg prednisone, every other day and 1 Benadryl every day. There are many medications and it takes some trial and error to find what is right for each unique person. It also matters that we are correctly diagnosed. Sometimes it’s like they’re throwing darts at a dart board wearing a blindfold 💔
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.
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.
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’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.
A tetanus shot caused me to have Chronic Fatigue Syndrome back in 2017. A year later, I was misdiagnosed with hepatitis and ended up with 2/3 vaccines for that. I refused the third of that series because it caused more CFS. The Spring of 2021, I had my second Moderna shot and it gave me Myalgic Encephalomyolitis, brain inflammation. I was stuck in bed for about a year. Now I still struggle with energy. I do take B12 every day, but that doesn't help tremendously. I am hoping that taking low dose naltrexone might help. I will be starting that soon. Do you have any other suggestions on how to increase energy??!! Thanks for a great video. Miss Monique 🙂🙏🌷💗
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.
A rheumatologist usually gives a diagnosis of SS and treats but recently I listened to a neurologist on TH-cam 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!
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
@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?!😂
Excellent presentation. Thank you so much Dr Alunno.
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!
Keep trying! I was told it was a vestibular migraine disorder. I have both neuro sjorgens and/or CIDP. I was dismissed for a long time until I basically lost my ability to speak swallow and walk. Finally got IVIG. Even a year later doctors dismiss me because I have been getting better
I totally agree. My symptoms have been worse over last almost 5 years since 1st lot of Covid. Worse over the last year. I get up. 1-6 times a night to drink water as my mouth is stuck together. The anxiety and panic attacks are awful long with a myriad of problems. I’ve been ignored. Now I’m going to ask my GP to test for sjogrens
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.
This is excellent information. Thank you. I have seronegative rheumatoid arthritis diagnosed about 2 1/2 years ago. In the last few years I’ve also noticed neurological symptoms - weird tingling in my legs, sometimes in my head. I’ve felt like they are neurological reactions but I couldn’t determine the triggers. Sometimes it’s just when I lay down and relax. Sometimes in the middle of a conversation and sometimes when I’m commenting on youtube vidoes (lol). My mother had an autoimmune disease that was not diagnosed. She died of kidney failure that came on very suddenly and I suspected systemic sclerosis. My ANA is positive with a titer of 1:80 but the tiered analysis doesn’t show anything in my blood. My eyes have had increased dryness over the past few years and recently my mouth feelsl very strange and agitated with a agitated feeling on the inside of the cheeks and my front lip that gets worse as the day wears on. My body can not tolerate methotrexate (liver toxicity). I have been paying close attention to my glucose (wearing a CGM) and my food intake and lifestyle to determine if there is anything that I can do to manage all of these symptoms. Eating lower carb, lean meats, fish and vegetables and avoiding high glycemic foods has helped my pain and inflammation. The more I learn, the more I realize how little is known about how to deal with autoimmune disease and there is so much overlap, I’m not sure the current classifications are very accurate. Part of me wants to try to find a doctor to get a diagnosis but that will entail a lot of research trying to find someone who really wants to figure it out (not my rheumatologist) and not look at me like I’m crazy. If I do pursue it, I could spend a lot of money getting a “guess” at a diagnosis and then will be told to use eye drops, dry mouth remedies, and then take steroids or an expensive biologic... I’m not sure it’s worth the effort. Instead - I’m going to continue my path of detailed tracking of my lifestyle and use AI to help analyze my data and determine what affects me in a negative way and what seems to have a positive impact. I’ve been medication free for the last 18 months and hope that I can stay that way. Sorry for the long comment - I’m hoping that sharing information helps someone else out there.
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
I just got diagnosed with small fiber neuropathy in September by a neurologist. My symptoms started 4 days after 2 steroid injections done in my wrist for carpel tunnel. That was done by a pain management doctor in April in NJ. I went to a 2nd pain management doctor in Princeton NJ for a second opinion after neuropathy symptoms started and after he did an EMG test on my legs feet and spine he told me to go see a neurologist. She diagnosed me with Small Fiber neuropathy. I told all 3 doctors including the doctors’s office who gave me steroids that the steroids most likely did this to me and they all said no. That’s a lie. I got numbness and pain in my foot and leg 4 days after my steroid injections. I did my own research online and medications can cause neuropathy. Of course it was the poison injections that damaged my nerves. He’s an awful and greedy doctor. I wish I refused the steroids that day in April. I’m so angry at this doctor. I’m so upset 😢
@ I’m really sorry you are going through this. It took a long time for me to find the right doctors. For me, low dose steroids are necessary to fight the agony my illnesses cause. For the small fiber neuropathy, I take 1/2 mg prednisone, every other day and 1 Benadryl every day. There are many medications and it takes some trial and error to find what is right for each unique person. It also matters that we are correctly diagnosed. Sometimes it’s like they’re throwing darts at a dart board wearing a blindfold 💔
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.
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 ?
Brilliant video - very helpful & 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?
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’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.
This makes sense y some sleep issues and feelings like my brain is so busy and my gut is so busy when I lay down to sleep and then urinary too
A tetanus shot caused me to have Chronic Fatigue Syndrome back in 2017.
A year later, I was misdiagnosed with hepatitis and ended up with 2/3 vaccines for that. I refused the third of that series because it caused more CFS.
The Spring of 2021, I had my second Moderna shot and it gave me Myalgic Encephalomyolitis, brain inflammation. I was stuck in bed for about a year. Now I still struggle with energy. I do take B12 every day, but that doesn't help tremendously.
I am hoping that taking low dose naltrexone might help. I will be starting that soon.
Do you have any other suggestions on how to increase energy??!!
Thanks for a great video.
Miss Monique 🙂🙏🌷💗
😢❤
Very informative!! Thank you !
Wow this is interesting, thank you for sharing.
Thank you !
Well explained thank you!
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!😮
I have had Sjogrens for years. I went to a rheumatologist and she told me not to come back I was wasting her time.!!!
!! 😡@@shaunanorman4804
The QR code does not work. Can you give an URL instead? I would like to take the survey.
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 TH-cam 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:(
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 TH-cam 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!
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
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 ?
Türkçe alt yazı lütfen.
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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