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33 year old male recently diagnosed Sjorgren's primary w/Lupus overlap ... Confused


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Old 07-08-2017, 02:19 PM   #1
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33 year old male recently diagnosed Sjorgren's primary w/Lupus overlap ... Confused

Me: 33yo/male recently diagnosed with Sjorgren's primary / lupus overlap

My story: At 22 in my last year of college people began pointing out to me my white tongue. That was also the first time I started noticing a bad/metallic taste in my mouth. Other than that my health was fine. Over the years I would later be diagnosed w/ mild cases of angular cheilitis and thrush.

A year later at 23 was when my symptoms started interfering w/ my quality of life. 6 months after finishing college after a bad sinus infection I began getting headaches/migraines, what I now know as brain fog, and unbearable fatigue. I saw an allergist, an ENT and neurologist. Just as quickly as my symptoms had come they disappeared 6 months later.

In the fall of 2007 I started graduate school at Georgetown and had no problems until the summer of 2008. The headaches/migraines, cognitive problems and fatigue came back w/ a vengeance. Again I saw an allergist, ENT, etc. Was put on antibiotics, was given allergy medicine but nothing helped the fatigue and brain fog. I remember calling my mom in desperation, crying--and I never cry, telling her, "I can't think. I can't read w/o wanting to fall asleep. And you know I love to read. I can't read."

Over a few months time my symptoms waxed and waned and at no point did any of the doctors suggest autoimmune disease. I should add my father is an ER physician and he never suggested it either. In fact, he thought, like so many other doctors I've seen that I was making it up, and it was all in my head.

By 2009 and 2010 my "episodes" went from 4 to 5 days, to a week to 2 weeks at a time. I began writing in a journal all my symptoms and noticed that when the "episodes" came the fatigue and cognitive dsyfunction were so bad I didn't want to get out of bed. During this time my headaches morphed into full migraine episodes--nausea, sensitivity to light, and pain so bad I needed tramadol for the pain.

By 2012 my cognitive dysfunction was so bad the only work I could continue to do was wait tables. Around this time my mom was also suffering from advanced breast cancer, so worrying or complaining about my symptoms was not an option. She passed in 2013 and I fell into a short depression until 2014.

A year later in 2014 was when I began to realize how sick I actually was. I began to concentrate on myself again. The fatigue had morphed into "episodes" where I physically could not get out of the bed w/o popping caffeine pills, 200mg at a time. And even that was only enough to get me out of bed. From 2014-2016 I kept going back to my primary doctor frustrated more than ever. My primary doc, my brother, my dad and my friends began to label me a hypochondriac. My primary doc sent me to a shrink in 2015. I went because I was so desperate to feel "normal" I convinced myself maybe it was depression and anxiety.

The problem was that I didn't feel sad. I felt sad because I physically couldn't do the things I wanted to do. A common refrain was that, "I feel 30 going on 75". The fatigue became so bad I became unable to do social activities and at one point my family thought I was trying to avoid them. Everyone kept telling me I'm a hypochondriac and I can't tell you how many doctors I saw during that time.

In Aug 2015 a new symptom cropped up. I noticed my urine began to look different. Extremely frothy and bubbly. I told this to my primary doc and dad who both dismissed me. I knew something wasn't right but kept my mouth shut thinking maybe I was crazy. By 2016, after years of migraines they vanished. I was getting them weekly at one point but they disappeared by 2016.

Finally in October 2016 evidence that something was really wrong surfaced. After months of unexplained water retention/bloating in my face, difficulty peeing, and intermittently cloudy urine I collapsed at home, crawled to my cell phone and texted to my brother and dad that I was about to pass out and needed to go to the ER. Luckily my brother lives nearby, picked me up and drove me to the ER. They gound that my GFR kidney function was abnormal as well as my Creatinine Kinase. I was discharged with Renal Insufficiency and told to see a nephrologist.

In Nov 2016 the nephrologist diagnosed me with Stage 1 CKD, chronic kidney disease and told me there was nothing really to do but get tested periodically and sent on my way. She didn't seem to concerned but I still felt something just wasn't right with my body.

I went to the ER again in Jan 2017 and a couple abnormalities surfaced. A very low WBC and elevated Creatinine Kinase once again. Still I guess the elevations weren't bad enough for them to be alarmed because they discharged me with basic instructions. For two months, Feb and March 2017, I felt the best I'd had in years. I thought I was cured as I had not had a "episode-free" period like that in years.

Then in late March I noticed that my upperback pain, knots, muscle spasms, and tenderness in my neck intensified. I also noticed small, mild rashes all over my body. Legs, arms, chests, back. Because I had eczema as a child I thought that was what it was at first. But my eczema had never been so diffuse and persistent. In May I decided to get bloodwork again for my kidneys and miraculously my kidney function had returned to normal! My doctors were baffled but Chronic Kidney Disease was then ruled out.

A few weeks ago I woke up with swelling in my face so severe that I decided I finally should see a rheumatologist before I moved. I'm supposed to be moving to Spain for a one year fashion photography program in October.

In the initial visit the rheumatologist listened to my history carefully and noticed the slight abnormalities in blood work over the years. He told me he was skeptical that I had autoimmune disorder based off my symptoms, body movement and gender, but said I should be screened for autoimmune disease just in case.

Well I got the call a few days ago that my bloodwork was abnormal and that I needed to come in so he could speak with me.

I tested positive for ANA and Sjorgren's Antibody (SS-A). But that's not what compelled him to suggest treatment. He noted that my C-Reactive protein number was particularly high in addition to my SED rate/Westergren. He said the numbers were too high for their not to be some type of inflammatory/auto immune disease going on. He diagnosed me with Sjorgren's primary w/ mild lupus overlap. Right now my emotions are all over the place. Vindicated, angry, resentful, bitter at years wasted from people not believing me, scared, and really, really confused. A year ago I asked my dad could it be Sjorgren's because I had always had dry mouth and my dry eye symptoms had gotten to the point where they produced discharge, were scratchy and red, etc. I finally started treatment for my dry eye with Xiidra in January 2017. My opthamologist noted then my reduced tear function.

He's started me on 200mg/Plaquenil twice a day along with another drug I can't recall for the muscle inflammation and pain. He says the Plaquenil should help the fatigue, brain fog and rashes. I've started the drug in the meantime but plan on getting a second opinion as soon as possible. I will see him again Aug 8, and if my inflammatory markers have not improved he said he wants to start me on very low dose prednisone.

If you've made it this far my fear/anxiety is that there is some type of kidney involvement going on. From everything I've read the Sjorgren's doesnt' explain the water retention, that has now gotten noticeable to friends and family. It also doesn't explain my declining kidney function and then a complete and full reversal....or does it? I'm so confused and in the meantime still battling fatigue that has surged in recent weeks.

I'm so glad I've found this board and forum. I'm angry that I was told to have a positive attitude, given anti-depressants, and never tested for autoimmune disorder but it's okay. My questions as I await second opinion, does Sjorgren's primary with lupus overlap sound right? Will the Plaquenil help? How do you deal with the water retention....I'm really self conscious of it. What about the rashes and constant itchiness? How do you get that under control? Those who have kidney involvement what are your symptoms? Does my normal GFR rule out kidney involvement?

Thanks in advance,

Outsider

 
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Old 07-08-2017, 03:39 PM   #2
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Re: 33 year old male recently diagnosed Sjorgren's primary w/Lupus overlap.....Confus

Outsider, welcome. You are an "insider" here! (Or on the lupus board, btw.) But first, I'm very sorry to read about your mother's passing away. That's an extremely hard loss to bear, I know. My heart goes out.

Now onto the rest... You & I have a lot of overlap. First, Sjogren's and/or lupus does make sense to me, based on the anti-Ro, inflammation markers, and ANA. If you have any doubts, you could do some reading. There are specific tests eye specialists use to confirm Sjogren's: Schirmer's measures tearing; rose Bengal or lissamine green staining look for corneal pitting. The most accurate test, though, is lip biopsy, which is painful.

Re diagnosing lupus: currently in use are 11 criteria developed by the American College of Rheumatology (ACR). You generally (but not always) have to met 4 or more to sustain a dx of systemic lupus. You could find a short version of these on the lupus board, in the "sticky posts" section.

I'm an anti-Ro lupus patient myself. I share much of your history, including the prolonged horror of seeking a dx. (And I fooled everyone by staying resolutely ANA-negative, which is extremely rare.)

Re kidneys, urinary issues, and water retention. I've had a lot of urinary issues, including frequent UTI's, occasionally backing up into my kidneys. Also stones, including total blockages. No facial swelling, but since Sjogren's can enlarge the parotid glands, could that have been the cause, I wonder? (You could ask.)

Sjogren's can also cause renal tubular acidosis---which I think alters kidney values. (I haven't read about it recently & am foggy on it, sorry.)

Your rashes. Does UV light (like sun) provoke them? Anti-Ro patients are thought to be THE most photosensitive of all lupus patients. Since dx, I must avoid "high sun" (say, 10-4), and wear sunblock & hats of tight weave with broad brims, long sleeves & trousers. If UV aggravates your rashes and/or promotes other symptoms, you'll need to discuss and find ways to protect yourself.

Btw, the 2 rashes most associated with anti-Ro are Subacute Cutaneous Lupus Erythematosus, annular form (ring-like with clear centers) and Subacute Cutaneous Lupus Erythematosus, psoriasiform or papulosquamous (look somewhat like psoriasis but isn't). Both are abbreviated SCLE. Both tend not to itch overly (but I assume CAN); and while scarring and depigmentation can occur, both are fairly rare. My lesions were SCLE annular form.

Plaquenil has helped me a lot. It's a slow-building drug---it can take upwards of 4-6 months to reach its full effect---but that doesn't mean you won't feel some benefits sooner than that.

Looking at your past, I understand your resentment and anger---a lot of us here have faced misdiagnoses, scorn, etc. I was wildly honked, frankly (my main career years, my child-bearing years, etc.) And I was treated badly by many doctors (hubby confused but supportive; family, clueless; employers plain crazed.) But as I felt better & gained a new normal, a lot of that drifted to the back burner. It takes time, I think, to come to grips with years of confusion. Right after dx, I found these boards, and posting helped: I met lovely people, and I was able to transform some negative ieelings into positive. I do hope you give hanging out here a try---can't hurt, right? (And vent all you want, it's a-ok to vent.)

You could also check some lupus books out of your local library. (See "Resources" in sticky post section of lupus board.) You don't have to read cover to cover: just use the indexes & chapter headings to zone into only what most applies. Looking forward to hearing more & sending you warm wishes, sincerely, Vee

Last edited by VeeJ; 07-08-2017 at 03:44 PM. Reason: typos

 
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Old 07-08-2017, 04:25 PM   #3
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Re: 33 year old male recently diagnosed Sjorgren's primary w/Lupus overlap.....Confus

P.S. Re GFR, I just read that values consistent with Stage I CKD (meaning =or> 90) can occur just due to a *transient* blockage. So if these findings were never replicated, I'd probably wonder more about the various transient causes possible. I'd also want to know exactly WHICH values were off: only GFR? Anything else? And did the nephrologist call for 24-hour urine collection? Those show so much more than urinalysis & blood labs. (There's even a specialty testing firm in Chicago known for producing extremely detailed reports, far more detailed than the usual.

Creatinine kinase. I've always thought this was a blood serum marker for muscle damage (vs. just-plain creatinine, which is a kidney marker). I hope someone here can chip in & clarify!

Re kidneys & lupus. I forgot to say that many patients do not have kidney involvement, meaning it is NOT a "given" by any means.; and having a normal GFR is good news. Bye for now.

 
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Old 07-08-2017, 06:22 PM   #4
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Re: 33 year old male recently diagnosed Sjorgren's primary w/Lupus overlap.....Confus

Quote:
Originally Posted by VeeJ View Post
Outsider, welcome. You are an "insider" here! (Or on the lupus board, btw.) But first, I'm very sorry to read about your mother's passing away. That's an extremely hard loss to bear, I know. My heart goes out.

Now onto the rest... You & I have a lot of overlap. First, Sjogren's and/or lupus does make sense to me, based on the anti-Ro, inflammation markers, and ANA. If you have any doubts, you could do some reading. There are specific tests eye specialists use to confirm Sjogren's: Schirmer's measures tearing; rose Bengal or lissamine green staining look for corneal pitting. The most accurate test, though, is lip biopsy, which is painful.

Re diagnosing lupus: currently in use are 11 criteria developed by the American College of Rheumatology (ACR). You generally (but not always) have to met 4 or more to sustain a dx of systemic lupus. You could find a short version of these on the lupus board, in the "sticky posts" section.

I'm an anti-Ro lupus patient myself. I share much of your history, including the prolonged horror of seeking a dx. (And I fooled everyone by staying resolutely ANA-negative, which is extremely rare.)

Re kidneys, urinary issues, and water retention. I've had a lot of urinary issues, including frequent UTI's, occasionally backing up into my kidneys. Also stones, including total blockages. No facial swelling, but since Sjogren's can enlarge the parotid glands, could that have been the cause, I wonder? (You could ask.)

Sjogren's can also cause renal tubular acidosis---which I think alters kidney values. (I haven't read about it recently & am foggy on it, sorry.)

Your rashes. Does UV light (like sun) provoke them? Anti-Ro patients are thought to be THE most photosensitive of all lupus patients. Since dx, I must avoid "high sun" (say, 10-4), and wear sunblock & hats of tight weave with broad brims, long sleeves & trousers. If UV aggravates your rashes and/or promotes other symptoms, you'll need to discuss and find ways to protect yourself.

Btw, the 2 rashes most associated with anti-Ro are Subacute Cutaneous Lupus Erythematosus, annular form (ring-like with clear centers) and Subacute Cutaneous Lupus Erythematosus, psoriasiform or papulosquamous (look somewhat like psoriasis but isn't). Both are abbreviated SCLE. Both tend not to itch overly (but I assume CAN); and while scarring and depigmentation can occur, both are fairly rare. My lesions were SCLE annular form.

Plaquenil has helped me a lot. It's a slow-building drug---it can take upwards of 4-6 months to reach its full effect---but that doesn't mean you won't feel some benefits sooner than that.

Looking at your past, I understand your resentment and anger---a lot of us here have faced misdiagnoses, scorn, etc. I was wildly honked, frankly (my main career years, my child-bearing years, etc.) And I was treated badly by many doctors (hubby confused but supportive; family, clueless; employers plain crazed.) But as I felt better & gained a new normal, a lot of that drifted to the back burner. It takes time, I think, to come to grips with years of confusion. Right after dx, I found these boards, and posting helped: I met lovely people, and I was able to transform some negative ieelings into positive. I do hope you give hanging out here a try---can't hurt, right? (And vent all you want, it's a-ok to vent.)

You could also check some lupus books out of your local library. (See "Resources" in sticky post section of lupus board.) You don't have to read cover to cover: just use the indexes & chapter headings to zone into only what most applies. Looking forward to hearing more & sending you warm wishes, sincerely, Vee

Vee,

Thank you for taking the time to respond. I will read the stickies to get a better understanding. Your post very, very helpful! Thank you and I look forward to learning about this disease and getting it under control.

 
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Old 07-08-2017, 06:27 PM   #5
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Re: 33 year old male recently diagnosed Sjorgren's primary w/Lupus overlap.....Confus

Quote:
Originally Posted by VeeJ View Post
P.S. Re GFR, I just read that values consistent with Stage I CKD (meaning =or> 90) can occur just due to a *transient* blockage. So if these findings were never replicated, I'd probably wonder more about the various transient causes possible. I'd also want to know exactly WHICH values were off: only GFR? Anything else? And did the nephrologist call for 24-hour urine collection? Those show so much more than urinalysis & blood labs. (There's even a specialty testing firm in Chicago known for producing extremely detailed reports, far more detailed than the usual.

Creatinine kinase. I've always thought this was a blood serum marker for muscle damage (vs. just-plain creatinine, which is a kidney marker). I hope someone here can chip in & clarify!

Re kidneys & lupus. I forgot to say that many patients do not have kidney involvement, meaning it is NOT a "given" by any means.; and having a normal GFR is good news. Bye for now.
Regarding the my numbers....I had decreased GFR along with elevated creatinine. Yes the creatinine kinase is different and signals muscle damage. The rheumatologist believes the inflammation in my muscles is causing the elevated CK levels. I think then I'll stop worrying about my kidneys so much.

I do have a non obstructing 5mm kidney stone so I wonder if that is causing the cloudy urine.

 
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Old 07-08-2017, 06:29 PM   #6
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Re: 33 year old male recently diagnosed Sjorgren's primary w/Lupus overlap.....Confus

Quote:
Originally Posted by VeeJ View Post
Outsider, welcome. You are an "insider" here! (Or on the lupus board, btw.) But first, I'm very sorry to read about your mother's passing away. That's an extremely hard loss to bear, I know. My heart goes out.

Now onto the rest... You & I have a lot of overlap. First, Sjogren's and/or lupus does make sense to me, based on the anti-Ro, inflammation markers, and ANA. If you have any doubts, you could do some reading. There are specific tests eye specialists use to confirm Sjogren's: Schirmer's measures tearing; rose Bengal or lissamine green staining look for corneal pitting. The most accurate test, though, is lip biopsy, which is painful.

Re diagnosing lupus: currently in use are 11 criteria developed by the American College of Rheumatology (ACR). You generally (but not always) have to met 4 or more to sustain a dx of systemic lupus. You could find a short version of these on the lupus board, in the "sticky posts" section.

I'm an anti-Ro lupus patient myself. I share much of your history, including the prolonged horror of seeking a dx. (And I fooled everyone by staying resolutely ANA-negative, which is extremely rare.)

Re kidneys, urinary issues, and water retention. I've had a lot of urinary issues, including frequent UTI's, occasionally backing up into my kidneys. Also stones, including total blockages. No facial swelling, but since Sjogren's can enlarge the parotid glands, could that have been the cause, I wonder? (You could ask.)

Sjogren's can also cause renal tubular acidosis---which I think alters kidney values. (I haven't read about it recently & am foggy on it, sorry.)

Your rashes. Does UV light (like sun) provoke them? Anti-Ro patients are thought to be THE most photosensitive of all lupus patients. Since dx, I must avoid "high sun" (say, 10-4), and wear sunblock & hats of tight weave with broad brims, long sleeves & trousers. If UV aggravates your rashes and/or promotes other symptoms, you'll need to discuss and find ways to protect yourself.

Btw, the 2 rashes most associated with anti-Ro are Subacute Cutaneous Lupus Erythematosus, annular form (ring-like with clear centers) and Subacute Cutaneous Lupus Erythematosus, psoriasiform or papulosquamous (look somewhat like psoriasis but isn't). Both are abbreviated SCLE. Both tend not to itch overly (but I assume CAN); and while scarring and depigmentation can occur, both are fairly rare. My lesions were SCLE annular form.

Plaquenil has helped me a lot. It's a slow-building drug---it can take upwards of 4-6 months to reach its full effect---but that doesn't mean you won't feel some benefits sooner than that.

Looking at your past, I understand your resentment and anger---a lot of us here have faced misdiagnoses, scorn, etc. I was wildly honked, frankly (my main career years, my child-bearing years, etc.) And I was treated badly by many doctors (hubby confused but supportive; family, clueless; employers plain crazed.) But as I felt better & gained a new normal, a lot of that drifted to the back burner. It takes time, I think, to come to grips with years of confusion. Right after dx, I found these boards, and posting helped: I met lovely people, and I was able to transform some negative ieelings into positive. I do hope you give hanging out here a try---can't hurt, right? (And vent all you want, it's a-ok to vent.)

You could also check some lupus books out of your local library. (See "Resources" in sticky post section of lupus board.) You don't have to read cover to cover: just use the indexes & chapter headings to zone into only what most applies. Looking forward to hearing more & sending you warm wishes, sincerely, Vee
Forgot to add I'm not sure if the sun aggravates the rash. I'll start paying attention to that.

 
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Old 07-09-2017, 03:49 AM   #7
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Re: 33 year old male recently diagnosed Sjorgren's primary w/Lupus overlap ... Confus

"Outsider", you are entirely welcome. To recap (so far):
  • Definitely check out "stickies" (they are abbreviated), also some lupus library books, where you'll find FULL explanations of the criteria. At least one such book describes, in addition to lupus, all the AI "close cousins", i.e., Sjogren's, RA, MCTD, etc. In that one, there's a great recap chapter titled "Is It Really Lupus?", in which author describes how each is differentiated from the others. Also, I found reading calmed me, as I could see the big worries I *didn't* have, i.e., I gained valuable perspective.
  • Sun. Definitely assess its effect. (I was shocked, as I'd been in sun all my life until then, with no blowback. Well, I'd changed!)
  • Rashes. Internet has pics & articles on those two anti-Ro-associated rashes.
  • Creatine kinase. That's interesting, a "muscle hit" (myositis)? Don't know how often that happens in lupus and/or Sjogren's, but I believe others here and/or on lupus board have mentioned it. (You could do a Search on those boards for "key word" = myositis or creatinine kinase.)
  • Kidneys. You definitely want regular check-ups & labs, especially in early days, which for lupus patients should *always* include urinalysis. That and serum GFR are how kidney function is closely monitored.
  • Non-obstructing stones. Those can irritate & can even become infected. (I wondered whether AI patients might be more "sensitive" to stones, once there, but I never found that out.) Plus, all of mine eventually moved along (ouch). Doctors can only determine the stone type if you pass it or if they retrieve it surgically, but a 24-hour urine collection can suggest what type(s) you're prone to forming, and for certain types diet reco's are possible. (e.g., I'm an oxylate gal, so now I avoid black tea, spinach, etc. I also drink more water as dehydration causes concentrated urine which promotes stone formation.)

We'll be rooting for you to find ways to reduce & control symptoms, so that you may pursue your real goals. Hang in there, and touch base whenever the mood strikes, ok? Glad you found us! Wishing you better days ahead, Vee

 
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Old 07-09-2017, 10:25 PM   #8
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Re: 33 year old male recently diagnosed Sjorgren's primary w/Lupus overlap ... Confus

Quote:
Originally Posted by VeeJ View Post
"Outsider", you are entirely welcome. To recap (so far):
  • Definitely check out "stickies" (they are abbreviated), also some lupus library books, where you'll find FULL explanations of the criteria. At least one such book describes, in addition to lupus, all the AI "close cousins", i.e., Sjogren's, RA, MCTD, etc. In that one, there's a great recap chapter titled "Is It Really Lupus?", in which author describes how each is differentiated from the others. Also, I found reading calmed me, as I could see the big worries I *didn't* have, i.e., I gained valuable perspective.
  • Sun. Definitely assess its effect. (I was shocked, as I'd been in sun all my life until then, with no blowback. Well, I'd changed!)
  • Rashes. Internet has pics & articles on those two anti-Ro-associated rashes.
  • Creatine kinase. That's interesting, a "muscle hit" (myositis)? Don't know how often that happens in lupus and/or Sjogren's, but I believe others here and/or on lupus board have mentioned it. (You could do a Search on those boards for "key word" = myositis or creatinine kinase.)
  • Kidneys. You definitely want regular check-ups & labs, especially in early days, which for lupus patients should *always* include urinalysis. That and serum GFR are how kidney function is closely monitored.
  • Non-obstructing stones. Those can irritate & can even become infected. (I wondered whether AI patients might be more "sensitive" to stones, once there, but I never found that out.) Plus, all of mine eventually moved along (ouch). Doctors can only determine the stone type if you pass it or if they retrieve it surgically, but a 24-hour urine collection can suggest what type(s) you're prone to forming, and for certain types diet reco's are possible. (e.g., I'm an oxylate gal, so now I avoid black tea, spinach, etc. I also drink more water as dehydration causes concentrated urine which promotes stone formation.)

We'll be rooting for you to find ways to reduce & control symptoms, so that you may pursue your real goals. Hang in there, and touch base whenever the mood strikes, ok? Glad you found us! Wishing you better days ahead, Vee


Thank you Vee! I'll also keep you updated when I get a second opinion about my lab work. Thanks again.

 
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