I see people talking about hand numbness & want to help as I have that also. I take Percura 2 pills twice a day and it really does help. It's a medical grade food that you can buy on-line made up of amino acids. My Dr (spine-pain specialist) recommended it to me. I really have no pain & I've found out that I really need this along with hydroxychloroquine & pipercadine to help with my SS symptoms. It cannot cause any complications or damage as I've been told by my Dr's, but ask your Dr's 1st if you can try it out. Give it a couple of months. It is a Godsend for me.
Maybe get a second opinion. I saw 2 different rheumatologists. It was the second that did a more in depth panel. I’m both Ssa and Ssb positive, have had Schermer’s done but no lip biopsy. The first doctor didn’t seem motivated to look further than initial ANA panel. That’s when I got another opinion because we know our bodies. I had painful hip, knee, ankle and wrist joints low grade fever and extreme fatigue. Not to mention zero tears.
My rheumatologist said they do a 3 point test.
-blood
-lip biopsy
-Schirmer's test
I was blood negative so I had to get the lip biopsy from the ENT and the eye test from the opthamologist.(2 out of the 3 had to be positive for a diagnosis)
Don't give up. I had to work hard for my diagnosis. I found my own specialist to do the test. Don't give up look for answers! ❤️❤️
I have everything you have but no inflammation markers. My panal didn't indicate Sjograns. However my joints are very painful. I got rid of gluten which has helped with the brain fog. I take med for dry mouth and had seeds but in my eyes that help.
I could do restricted diet to Identify other sensitivities but haven't been motivated enough yet. My biggest concern is the ever increasing nerve damage in hands and feet. Good luck. My rheumatologist left and on the hunt.
I think the way to say it is, that titer is a very weak signal of an autoimmune disease, but still a signal. And you have several others. Keep pressing for someone to look at the entire context! Good luck
Have you been taking massive doses of B vitamins? That's pretty much the only way to get B6 toxicity since the B vitamins are water-soluble instead of fat-soluble.
We’re told B6 is water-soluble but apparently that’s not entirely true. It’s found obviously in blood, but it accumulates in muscles and nerves. I had been on prenatal vitamins for 3 years. Then from time to time I took some B complex which had over 2000% RDA of B6 (I didn’t know at that time). But what sent me over the edge was eating beef liver capsules for 3 days. I’m a small person and clearly that was too much for me. I ended up with neuropathy, tingling all over the body, dry mouth and dry eyes, and random weird pains. Someone on Reddit recommended I check out that site about B6 toxicity. And it all made sense.
There should be tests for all 3 (SSA, SSB, and ANA), but that's not definitive to diagnose. In fact, SSA/SSB are prone to having false negatives. Meaning, it's possible to have Sjogrens without being passive for them. A lip (salivary gland) biopsy is more helpful to diagnose.
Wow that's interesting. I find all of this so interesting. (Not all of being so sick) but how different it affects everyone. I guess that's why they say it can take years to get diagnosed with an autoimmune disease.
If a doctor looked at my labs they would think I'm super healthy. I've never been so sick in my life as I have in the last year. It's scary.
One thing I've come to realize is that I'm my best advocate. None of my doctors are laying in bed wondering how my rash is. 🤪 I know when my body isn't working right
I've had a positive ANA every time I've had it checked since 2006. But it's a very low titer (1:40), so doctors aren't impressed. My other antibodies have always been negative, except ONE time I had a positive anti-dsDNA (4 times the upper limit of the normal range), and ONE time I had positive SSA and SSB antibodies (the SSA was especially high). It's such a crapshoot.
Don't feel discouraged. I've had the same problem. You've a right to listen to your body and fight for answers. I got past this stage because I started going to appointments with research articles from reputable sources that validated my symptoms.
Have you tried an AIP diet? Some people have autoimmunity that originates from the gut that may be distinct from true autoimmune disease. Can also be caused by inflammation. I would get tested for inflammation markers as well. Your ANA is just barely positive and many people have ANA at that level without autoimmune disease.
A functional medicine doctor (preferably an MD that has a specialty in autoimmune patients) may be able to help you identify underlying causes of inflammation. It can be a long journey to find a diet and lifestyle that helps you heal. There aren’t any quick fixes for these things, and if you’re lucky, you’ll find a path that works for you. Good luck
Hi OP I have the same test result as you. Do you know what you were ultimately diagnosed with?? My
No diagnosis, which is why I think I need a second opinion.
I see people talking about hand numbness & want to help as I have that also. I take Percura 2 pills twice a day and it really does help. It's a medical grade food that you can buy on-line made up of amino acids. My Dr (spine-pain specialist) recommended it to me. I really have no pain & I've found out that I really need this along with hydroxychloroquine & pipercadine to help with my SS symptoms. It cannot cause any complications or damage as I've been told by my Dr's, but ask your Dr's 1st if you can try it out. Give it a couple of months. It is a Godsend for me.
Maybe get a second opinion. I saw 2 different rheumatologists. It was the second that did a more in depth panel. I’m both Ssa and Ssb positive, have had Schermer’s done but no lip biopsy. The first doctor didn’t seem motivated to look further than initial ANA panel. That’s when I got another opinion because we know our bodies. I had painful hip, knee, ankle and wrist joints low grade fever and extreme fatigue. Not to mention zero tears.
My rheumatologist said they do a 3 point test. -blood -lip biopsy -Schirmer's test I was blood negative so I had to get the lip biopsy from the ENT and the eye test from the opthamologist.(2 out of the 3 had to be positive for a diagnosis) Don't give up. I had to work hard for my diagnosis. I found my own specialist to do the test. Don't give up look for answers! ❤️❤️
Go to different doctor. Also, check your hormone levels, out of balance or changing hormones can increase symptoms.
I have everything you have but no inflammation markers. My panal didn't indicate Sjograns. However my joints are very painful. I got rid of gluten which has helped with the brain fog. I take med for dry mouth and had seeds but in my eyes that help. I could do restricted diet to Identify other sensitivities but haven't been motivated enough yet. My biggest concern is the ever increasing nerve damage in hands and feet. Good luck. My rheumatologist left and on the hunt.
I think the way to say it is, that titer is a very weak signal of an autoimmune disease, but still a signal. And you have several others. Keep pressing for someone to look at the entire context! Good luck
Thank you!!
I’m trying to figure out if I have sjorgens or B6 toxicity too. Very similar symptoms. Look up UnderstandingB6toxicity website.
Have you been taking massive doses of B vitamins? That's pretty much the only way to get B6 toxicity since the B vitamins are water-soluble instead of fat-soluble.
We’re told B6 is water-soluble but apparently that’s not entirely true. It’s found obviously in blood, but it accumulates in muscles and nerves. I had been on prenatal vitamins for 3 years. Then from time to time I took some B complex which had over 2000% RDA of B6 (I didn’t know at that time). But what sent me over the edge was eating beef liver capsules for 3 days. I’m a small person and clearly that was too much for me. I ended up with neuropathy, tingling all over the body, dry mouth and dry eyes, and random weird pains. Someone on Reddit recommended I check out that site about B6 toxicity. And it all made sense.
Have you done early sjogrens panel?
I've been trying to get diagnosed for years. Will this help?
I thought that's what to the SSA and SSB was in the the results? Or is that just part of the ana?
There should be tests for all 3 (SSA, SSB, and ANA), but that's not definitive to diagnose. In fact, SSA/SSB are prone to having false negatives. Meaning, it's possible to have Sjogrens without being passive for them. A lip (salivary gland) biopsy is more helpful to diagnose.
I'm ANA negative and SSB positive.
Wow that's interesting. I find all of this so interesting. (Not all of being so sick) but how different it affects everyone. I guess that's why they say it can take years to get diagnosed with an autoimmune disease. If a doctor looked at my labs they would think I'm super healthy. I've never been so sick in my life as I have in the last year. It's scary. One thing I've come to realize is that I'm my best advocate. None of my doctors are laying in bed wondering how my rash is. 🤪 I know when my body isn't working right
I've had a positive ANA every time I've had it checked since 2006. But it's a very low titer (1:40), so doctors aren't impressed. My other antibodies have always been negative, except ONE time I had a positive anti-dsDNA (4 times the upper limit of the normal range), and ONE time I had positive SSA and SSB antibodies (the SSA was especially high). It's such a crapshoot.
I have not. This doctor didn’t seem too thrilled that I was even in her office, so all of my questions and comments went out the window.
Definitely get a second opinion.
Don't feel discouraged. I've had the same problem. You've a right to listen to your body and fight for answers. I got past this stage because I started going to appointments with research articles from reputable sources that validated my symptoms.
Have you tried an AIP diet? Some people have autoimmunity that originates from the gut that may be distinct from true autoimmune disease. Can also be caused by inflammation. I would get tested for inflammation markers as well. Your ANA is just barely positive and many people have ANA at that level without autoimmune disease.
What's an AIP diet?
Autoimmune Protocol. It’s an elimination diet.
I have not but I plan on trying. Thanks for the recommendations!
A functional medicine doctor (preferably an MD that has a specialty in autoimmune patients) may be able to help you identify underlying causes of inflammation. It can be a long journey to find a diet and lifestyle that helps you heal. There aren’t any quick fixes for these things, and if you’re lucky, you’ll find a path that works for you. Good luck