Hey Everyone -
Thursday I went to the optometrist and she did a test to measure tear production (which she thought was normal). She then looked into my eyes and she said that my eyes were very dry. She gave me a prescription for eye drops and ointment to use for my dry eyes, but she also stated that I need to return to my primary care physician (or find a new one) because I need more tests done to see if I have Sjogren's or anything auto immune.
I have an appointment with a new Primary Care doctor, the neurologist and the GYN next month. Hopefully I can find answers...
Anyone else go through varying tests like this...?
I was diagnosed by bloodwork. I had the symptoms and that prompted a blood draw. I hope you find out what's going on soon.
meena ..... Many/most PCPs do not know much about Sjogrens Syndrome or most Autoimmune Diseases. They often do not know the symptoms of Autoimmune Diseases and often/frequently just brush them off as not related to anything. If they do run any tests, they often run just a very few. If they are negative, they won't pursue it, just say you don't have an Autoimmune Disease.
Many people with Autoimmune Diseases test negative with the blood work. Only 50-60% of people with Sjogren's have the positive antibody for Sjogren's. I would suggest seeing a Rheumatologist at a large university affiliated medical center. If you need a referral to get in, ask your new PCP for a referral. A good Rheumatologist will examine you and test your for all sorts of Autoimmune Diseases as well as other tests. Plus, a good Rheumatologist will treat based on symptoms, not just blood work.
Hi Meena, I'm glad you are following up on the investigations right away. I agree with Jasper, many PCP's don't diagnose Sjogren's or they do a quick screening which may denounce symptoms which can be early indicators of an autoimmune disease. A good rheumatologist at a teaching hospital or university center is your best bet. The bloodwork is not as important in the diagnosis of the disease. It is most important to have a team that you trust and will follow your progression as the years go on. For me, I had to see many specialists for the various symptoms, but all came back to the rheumy as Sjogren's manifestations. Good Luck.
Meena ..... I will add that I had symptoms of Sjogren's for years, actually decades, before I was diagnosed. (Dry mouth, very dry eyes, dry skin, fatigue, muscle and joint aches, difficulty swallowing as food got stuck in my throat, dry cough, sinus congestion but nasal dryness, burning in my feet and toes, interstitial cystitis - pain above the pubic bone and urinary frequency and urgency, and several more symptoms). I did tell my PCPs (4 different ones) about the symptoms but they kept brushing them off as nothing or as age related or that I was overweight.
When I finally did get a test for Sjogren's in Jan. 2012 the blood work was negative (SS-A) so they said I needed no further work-up and no referral to a Rheumatologist. But I saw another doctor for a different problem and asked for a referral to a Rheumatologist and they referred me. So, in July of 2013 I finally saw the Rheumatologist who ordered tons of tests. She felt, based on history and symptoms, that I had an Autoimmune Disease. In July 2013 I had a positive SS-A, low Vit D, and a positive ANA (although my ANA had been positive since at least 1993). I then had a lip biopsy, which was positive. However, my Rheumatologist will treat based on symptoms so, even if the blood tests were neg., if she thought I had Sjogren's, she would have treated me.
So that is why I say do not rely on PCPs. Get a good Rheumatologist.
Quote from: meena on June 13, 2015, 02:29:27 PM
Hey Everyone -
Thursday I went to the optometrist and she did a test to measure tear production (which she thought was normal). She then looked into my eyes and she said that my eyes were very dry. She gave me a prescription for eye drops and ointment to use for my dry eyes, but she also stated that I need to return to my primary care physician (or find a new one) because I need more tests done to see if I have Sjogren's or anything auto immune.
I have an appointment with a new Primary Care doctor, the neurologist and the GYN next month. Hopefully I can find answers...
Anyone else go through varying tests like this...?
Having dry eyes doesn't mean you have Sjogren's. Dry eyes is common with a lot of conditions and your optometrist was right to send you back to your doctor. As others have said, you need to see a rheumatologist so just tell your new GP that you want a referral based on the advice of the optometrist.
I am currently being treated based on positive ANA and symptoms. I've had so much blood taken out of me for blood tests that I'm possibly anemic and have just had an ultrasound on the thyroid and salivary glands, next week ultrasound of hands and then a lip biopsy. Even then, my rheumatologist said that a diagnosis of Sjogrens' isn't given for at least 18 months to 2 years as if it's autoimmune, it could develop into anything.
Quote from: cari on June 14, 2015, 08:39:56 AM
Quote from: meena on June 13, 2015, 02:29:27 PM
Hey Everyone -
Thursday I went to the optometrist and she did a test to measure tear production (which she thought was normal). She then looked into my eyes and she said that my eyes were very dry. She gave me a prescription for eye drops and ointment to use for my dry eyes, but she also stated that I need to return to my primary care physician (or find a new one) because I need more tests done to see if I have Sjogren's or anything auto immune.
I have an appointment with a new Primary Care doctor, the neurologist and the GYN next month. Hopefully I can find answers...
Anyone else go through varying tests like this...?
Having dry eyes doesn't mean you have Sjogren's. Dry eyes is common with a lot of conditions and your optometrist was right to send you back to your doctor. As others have said, you need to see a rheumatologist so just tell your new GP that you want a referral based on the advice of the optometrist.
I am currently being treated based on positive ANA and symptoms. I've had so much blood taken out of me for blood tests that I'm possibly anemic and have just had an ultrasound on the thyroid and salivary glands, next week ultrasound of hands and then a lip biopsy. Even then, my rheumatologist said that a diagnosis of Sjogrens' isn't given for at least 18 months to 2 years as if it's autoimmune, it could develop into anything.
I do have other symptoms as I've expressed here-----> https://sjogrensworld.org/index.php?topic=28001.msg297478#msg297478
The reason why I am being tested for it is because of my symptoms. I haven't seen a rheumatologist yet, but I'll be sure to ask my new PCP when I see her next month.
Quote from: meena on June 14, 2015, 01:11:51 PM
Quote from: cari on June 14, 2015, 08:39:56 AM
Quote from: meena on June 13, 2015, 02:29:27 PM
Hey Everyone -
Thursday I went to the optometrist and she did a test to measure tear production (which she thought was normal). She then looked into my eyes and she said that my eyes were very dry. She gave me a prescription for eye drops and ointment to use for my dry eyes, but she also stated that I need to return to my primary care physician (or find a new one) because I need more tests done to see if I have Sjogren's or anything auto immune.
I have an appointment with a new Primary Care doctor, the neurologist and the GYN next month. Hopefully I can find answers...
Anyone else go through varying tests like this...?
Having dry eyes doesn't mean you have Sjogren's. Dry eyes is common with a lot of conditions and your optometrist was right to send you back to your doctor. As others have said, you need to see a rheumatologist so just tell your new GP that you want a referral based on the advice of the optometrist.
I am currently being treated based on positive ANA and symptoms. I've had so much blood taken out of me for blood tests that I'm possibly anemic and have just had an ultrasound on the thyroid and salivary glands, next week ultrasound of hands and then a lip biopsy. Even then, my rheumatologist said that a diagnosis of Sjogrens' isn't given for at least 18 months to 2 years as if it's autoimmune, it could develop into anything.
I do have other symptoms as I've expressed here-----> https://sjogrensworld.org/index.php?topic=28001.msg297478#msg297478
The reason why I am being tested for it is because of my symptoms. I haven't seen a rheumatologist yet, but I'll be sure to ask my new PCP when I see her next month.
Like I said, dry eyes doesn't mean you have Sjogrens. Dry eyes can be caused by hormonal imbalance, autoimmune such as Lupus and various other conditions. It can be primary which means that your autoimmune is presented as predominately dryness or secondary which means it's alongside another autoimmune such as Hashimotos or Lupus. A firm diagnosis of Sjogrens wont' be given for 18 months to two years because it could develop into something else such as Lupus (the advice I was given by my rheumatologist) or be secondary to another autoimmune such as rheumatoid arthritis.
You will have to do a whole load of blood tests which may not come up with anything, perhaps a lip biopsy, ultrasounds to look for inflammation and whatever else your rheumatologist thinks is appropriate. You do need a referral to rule out autoimmune but may also be referred to other specialists depending on your symptoms and what your GP thinks. I was first sent to a hematologist then to a rheumatologist. I'm going to ask to make other referrals (neurologist and Endocrinologist) because of other symptoms I have. Autoimmune is very individual but it's essential you get it diagnosed as soon as you can because the sooner your start treatment the better.
Sjogren's CAN be just dryness, but it can also involve many other body systems and this can occur whether one has Primary Sjogren's or one has Secondary Sjogrens.
"Sjogren's is usually classified by a clinician as either primary or secondary. Primary Sjogren's occurs by itself and secondary Sjogren's occurs when another connective tissue disease is present. However, this classification does not always correlate with the severity of symptoms or complications. Primary Sjogren's and Secondary Sjogren's patients can all experience the same level of discomfort, complications and seriousness of their disease."
I have Primary Sjogren's and I have other system involvement including peripheral neuropathy, interstitial cystitis, and musculo-skeletal manifestations. In addition, I get Autoimmune flares.
Most Rheumatologist will diagnose a symptomatic person with Sjogren's as soon as they receive the lab result back. Most do not wait 2 years to give a diagnosis if they think it is Sjogren's. I had my diagnosis of Primary Sjogren's within days of my Rheumatologist receiving the lab results.
http://www.sjogrens.org/home/about-sjogrens-syndrome/sjoegrens-faqs
PS: for clarification: The above quote was written by Dr. Jody Hargrove and can be found at the link above on the Sjogren's Syndrome Foundation website.
Quote from: cari on June 14, 2015, 03:03:28 PM
Quote from: meena on June 14, 2015, 01:11:51 PM
Quote from: cari on June 14, 2015, 08:39:56 AM
Quote from: meena on June 13, 2015, 02:29:27 PM
Hey Everyone -
Thursday I went to the optometrist and she did a test to measure tear production (which she thought was normal). She then looked into my eyes and she said that my eyes were very dry. She gave me a prescription for eye drops and ointment to use for my dry eyes, but she also stated that I need to return to my primary care physician (or find a new one) because I need more tests done to see if I have Sjogren's or anything auto immune.
I have an appointment with a new Primary Care doctor, the neurologist and the GYN next month. Hopefully I can find answers...
Anyone else go through varying tests like this...?
Having dry eyes doesn't mean you have Sjogren's. Dry eyes is common with a lot of conditions and your optometrist was right to send you back to your doctor. As others have said, you need to see a rheumatologist so just tell your new GP that you want a referral based on the advice of the optometrist.
I am currently being treated based on positive ANA and symptoms. I've had so much blood taken out of me for blood tests that I'm possibly anemic and have just had an ultrasound on the thyroid and salivary glands, next week ultrasound of hands and then a lip biopsy. Even then, my rheumatologist said that a diagnosis of Sjogrens' isn't given for at least 18 months to 2 years as if it's autoimmune, it could develop into anything.
I do have other symptoms as I've expressed here-----> https://sjogrensworld.org/index.php?topic=28001.msg297478#msg297478
The reason why I am being tested for it is because of my symptoms. I haven't seen a rheumatologist yet, but I'll be sure to ask my new PCP when I see her next month.
Like I said, dry eyes doesn't mean you have Sjogrens. Dry eyes can be caused by hormonal imbalance, autoimmune such as Lupus and various other conditions. It can be primary which means that your autoimmune is presented as predominately dryness or secondary which means it's alongside another autoimmune such as Hashimotos or Lupus. A firm diagnosis of Sjogrens wont' be given for 18 months to two years because it could develop into something else such as Lupus (the advice I was given by my rheumatologist) or be secondary to another autoimmune such as rheumatoid arthritis.
You will have to do a whole load of blood tests which may not come up with anything, perhaps a lip biopsy, ultrasounds to look for inflammation and whatever else your rheumatologist thinks is appropriate. You do need a referral to rule out autoimmune but may also be referred to other specialists depending on your symptoms and what your GP thinks. I was first sent to a hematologist then to a rheumatologist. I'm going to ask to make other referrals (neurologist and Endocrinologist) because of other symptoms I have. Autoimmune is very individual but it's essential you get it diagnosed as soon as you can because the sooner your start treatment the better.
Well, I was diagnosed with PCOS; but the ER doctors and the ophthalmologist still think there's another issue going on (such as Sjogren's or an autoimmune diasease.
Quote from: Jasper on June 14, 2015, 04:39:43 PM
"Sj?gren?s is usually classified by a clinician as either primary or secondary. Primary Sj?gren?s occurs by itself and secondary Sj?gren?s occurs when another connective tissue disease is present.
This poster may have mistyped this answer. Secondary is when SjS occurs with another AUTOIMMUNE disease.
ccc
Quote from: cccourt1942 on June 14, 2015, 05:26:38 PM
Quote from: Jasper on June 14, 2015, 04:39:43 PM
"Sj?gren?s is usually classified by a clinician as either primary or secondary. Primary Sj?gren?s occurs by itself and secondary Sj?gren?s occurs when another connective tissue disease is present.
This poster may have mistyped this answer. Secondary is when SjS occurs with another AUTOIMMUNE disease.
ccc
Connective tissue is autoimmune.:)
QuoteWell, I was diagnosed with PCOS; but the ER doctors and the ophthalmologist still think there's another issue going on (such as Sjogren's or an autoimmune diasease.
It's interesting you say that as I've just had a load of hormone stuff done and my doc says I may also have PCOS. I looked this up and the symptoms are also fatigue, dry eyes, joint pain, brain fog etc etc So this also set me thinking and hoping this may be my problem but I think it's wishful thinking as I've had autoimmune rash ::)
Are you being treated for low progesterone? Is your doctor doing further tests regarding the PCOS? Has this involved Thyroid?
CCC ..... Thanks for pointing that out. I did not mistype it, though. I copied and pasted it from the Sjogren's Syndrome Foundation. It was written by Jody Hargrove, MD.
However, I actually did not really notice that Dr. Hargrove said Connective Tissue Disorder instead of Autoimmune Disorder. Your post peaked my interest and caused me to do further research. While most articles (that I found) don't do a very good job of describing Primary versus Secondary Sjogren's, the ones that do, refer to Secondary Sjogren's as occurring when another connective tissue disease is present.
"Sjogren's syndrome with gland inflammation (resulting in dry eyes and mouth, etc.) that is not associated with another connective tissue disease is referred to as primary Sjogren's syndrome. Sjogren's syndrome that is also associated with a connective tissue disease, such as rheumatoid arthritis, systemic lupus erythematosus, or scleroderma, is referred to as secondary Sjogren's syndrome. "
http://www.medicinenet.com/sjogrens_syndrome/article.htm
This subtle distinction is the reason Sjogren's in combination with Hashimoto's is classified as primary.........yes someone with Hashi's has and autoimmune disease, but the Sjogren's is Primary because the other AI is glandular, not connective tissue.
Basically all connective tissue disorders are autoimmune, but not all autoimmunes are connective tissue. You may also hear or see CTD referred to as Collagen Vascular Disease, apparently an older term, no longer in common use (but it was my reference when diagnosed with sarcoidosis).
Quote from: cari on June 14, 2015, 05:42:29 PM
QuoteWell, I was diagnosed with PCOS; but the ER doctors and the ophthalmologist still think there's another issue going on (such as Sjogren's or an autoimmune diasease.
It's interesting you say that as I've just had a load of hormone stuff done and my doc says I may also have PCOS. I looked this up and the symptoms are also fatigue, dry eyes, joint pain, brain fog etc etc So this also set me thinking and hoping this may be my problem but I think it's wishful thinking as I've had autoimmune rash ::)
Are you being treated for low progesterone? Is your doctor doing further tests regarding the PCOS? Has this involved Thyroid?
When I was diagnosed with PCOS, my transvaginal ultrasound showed cysts on the ovaries linked to it. I was put on birth control to make sure my periods wouldn't become irregular and to help with the chronic yeast infections I was getting, but they indeed made my periods irregular and I had to stop taking them. They are still irregular even after taking myself off of birth control. The first gyn I saw didn't want to do further testing, so I went to someone else. That gyn did the tests, but everything came back normal. I have another gyn appointment coming up, so I'll see how things are going now.
Quote from: meena on June 15, 2015, 05:50:15 AM
Quote from: cari on June 14, 2015, 05:42:29 PM
QuoteWell, I was diagnosed with PCOS; but the ER doctors and the ophthalmologist still think there's another issue going on (such as Sjogren's or an autoimmune diasease.
It's interesting you say that as I've just had a load of hormone stuff done and my doc says I may also have PCOS. I looked this up and the symptoms are also fatigue, dry eyes, joint pain, brain fog etc etc So this also set me thinking and hoping this may be my problem but I think it's wishful thinking as I've had autoimmune rash ::)
Are you being treated for low progesterone? Is your doctor doing further tests regarding the PCOS? Has this involved Thyroid?
When I was diagnosed with PCOS, my transvaginal ultrasound showed cysts on the ovaries linked to it. I was put on birth control to make sure my periods wouldn't become irregular and to help with the chronic yeast infections I was getting, but they indeed made my periods irregular and I had to stop taking them. They are still irregular even after taking myself off of birth control. The first gyn I saw didn't want to do further testing, so I went to someone else. That gyn did the tests, but everything came back normal. I have another gyn appointment coming up, so I'll see how things are going now.
Thanks for your response :)
It's different to what I'm going through as my progesterone is low and I'm not ovulating. I have had ultrasounds before and no cysts have been found but that was a while back. My doctor wants to repeat the tests at a different point in the cycle. It's all pretty overwhelming and I know what you're going through. :)
Quote from: cari on June 15, 2015, 06:34:17 AM
Quote from: meena on June 15, 2015, 05:50:15 AM
Quote from: cari on June 14, 2015, 05:42:29 PM
QuoteWell, I was diagnosed with PCOS; but the ER doctors and the ophthalmologist still think there's another issue going on (such as Sjogren's or an autoimmune diasease.
It's interesting you say that as I've just had a load of hormone stuff done and my doc says I may also have PCOS. I looked this up and the symptoms are also fatigue, dry eyes, joint pain, brain fog etc etc So this also set me thinking and hoping this may be my problem but I think it's wishful thinking as I've had autoimmune rash ::)
Are you being treated for low progesterone? Is your doctor doing further tests regarding the PCOS? Has this involved Thyroid?
When I was diagnosed with PCOS, my transvaginal ultrasound showed cysts on the ovaries linked to it. I was put on birth control to make sure my periods wouldn't become irregular and to help with the chronic yeast infections I was getting, but they indeed made my periods irregular and I had to stop taking them. They are still irregular even after taking myself off of birth control. The first gyn I saw didn't want to do further testing, so I went to someone else. That gyn did the tests, but everything came back normal. I have another gyn appointment coming up, so I'll see how things are going now.
Thanks for your response :)
It's different to what I'm going through as my progesterone is low and I'm not ovulating. I have had ultrasounds before and no cysts have been found but that was a while back. My doctor wants to repeat the tests at a different point in the cycle. It's all pretty overwhelming and I know what you're going through. :)
Yes, it is overwhelming. If the PCOS is a link to the dry eyes, then I wonder how I can cure it..?
Quote
Yes, it is overwhelming. If the PCOS is a link to the dry eyes, then I wonder how I can cure it..?
Just keep an open mind and keep pushing for a diagnosis that fits your symptoms. So for me, I had pain as well as dry eyes as well as stopped menstruation, emotional fluctuations etc etc So my symptoms don't just fit an autoimmune they also have hormonal implications recently confirmed by hormone tests. You may be able to cure it through hormonal balance, medication or symptomatically through drops or medication used to increase the flow. It depends what you are being treated for. I'm half way through all this, still going through tests to diagnose all the symptoms and having to push my doctor to do so. If you're unsure of anything or if it doesn't fit your symptoms, then get a second opinion. What I do recommend is seeing a nutritionist and overhauling your diet which is something you can focus on while waiting for tests and appointments etc You could also consider alternative treatment such as acupuncture but be very careful about herbs in case they contradict any medication you have been prescribed. I have just finished a six week course of acupuncture and am sleeping better which is a blessing. :)
Quote from: cari on June 16, 2015, 04:10:49 AM
Quote
Yes, it is overwhelming. If the PCOS is a link to the dry eyes, then I wonder how I can cure it..?
Just keep an open mind and keep pushing for a diagnosis that fits your symptoms. So for me, I had pain as well as dry eyes as well as stopped menstruation, emotional fluctuations etc etc So my symptoms don't just fit an autoimmune they also have hormonal implications recently confirmed by hormone tests. You may be able to cure it through hormonal balance, medication or symptomatically through drops or medication used to increase the flow. It depends what you are being treated for. I'm half way through all this, still going through tests to diagnose all the symptoms and having to push my doctor to do so. If you're unsure of anything or if it doesn't fit your symptoms, then get a second opinion. What I do recommend is seeing a nutritionist and overhauling your diet which is something you can focus on while waiting for tests and appointments etc You could also consider alternative treatment such as acupuncture but be very careful about herbs in case they contradict any medication you have been prescribed. I have just finished a six week course of acupuncture and am sleeping better which is a blessing. :)
A nutritionist would probably be a good idea, especially for my IBS. :-[
Quote
A nutritionist would probably be a good idea, especially for my IBS. :-[
Yes, a lot of people seem to give up gluten so perhaps that's something to discuss with the nutritionist or dietician :)