I was wondering if someone could help me., I get swollen glands all over..mainly neck and head (sore) tired. dry hair brittle and tired all the time muscle aches and weakness. Headaches like no other. hair loss on and off....I have tested positive for ANA, RNA, Sjorgens SSB and Antithyroidglobulin.....My normal thyroid levels are always normal but on low side.... Vitamin D is low and my iron binding. I have to see a rheumotolgist every 3 months to have kidney and liver checked but have not yet been diagnosed so I am so confused and lately I am messing up my words and having eye problems on and off. I feel like I am going crazy! This whole process is very hard.
THANKS FOR ANY HELP OR ADVICE and also take mobic daily till gave me an ulcer.
Does testing positive for Sjorgens SSB mean I have it and what other autoimmune diseases could be linked with ANA, ANti RNA and Sjorgens SSB?
My vitamin D was 22 started RX Vitamin D and 4 months later its 21...Lower?
Now my LDL is high never has been before. So many different things....I am wondering about others symptoms and is it Just dry eyes/mouth?
Thank you all for taking the time to read and possibly respond :-)
If you can think of a thread which you can direct JM to which will help her, please give her the thread name.
Sorry to hear you are feeling like this. Have any meds been prescribed for you? If I were in your shoes (and I have been to some degree) I would be saying to the doctor, "what can you do to help me with these symptoms?"
I'm not one of the knowledgeable posters regarding your tests, but I'm kind of surprised they haven't done anything for you yet. When I was first hypothyroid I was absolutely miserable. I had no energy, my cholesterol was high, I gained weight, I couldn't concentrate. My labs didn't show anything for months and then finally they were a little elevated and I went on levothyroxine. One of my sisters (we are all on levothyroxine now) just felt a little lazy and was tested because my doctor suggested that all of my sisters were at risk. Her lab results were much more indicative of a problem than my results, yet she felt relatively fine.
Hang in there and make sure they understand how poorly you feel and that it is getting worse. If you haven't, ask what they can do for you. If they say they won't treat you look for a more responsive doctor. I am seronegative for Sjogren's and for RA yet am being treated and feel much better than I did two years ago.
T
Scroll down on page one to Confused by my rheumy's statement. Read thru some of those posts. :)
https://sjogrensworld.org/index.php?topic=24807.0
This is Confused by my rheumy's statements.
Hugs, Elaine
Welcome to the board! I am so sorry you are going through this!
I have no positive bloodwork at all, except low vitamin D, and my rhuemy is treating me, rather aggressively, according to my symptoms. If you are miserable, then either ask your rhuemy to be more aggressive, starting you on some medication, if that is what you wish, or perhaps visit another doctor for another opinion.
You have to be proactive for your own health. At the end of the day, the doctor goes home without thinking much again of us, if at all, until our next appointment. If you are unsatisfied, you have to advocate for yourself.
Post often! We are here for you. Hugs.
Welcome.
It certainly sounds like you have Sjogren's with your lab results and symptoms. I'm not sure why you haven't been given a diagnosis. If you see a rheumy every three months, what does he/she list as your diagnosis on your records? What did he/she say about your test results? How long have you been seeing him/her?
I would ask outright what what your diagnosis is and what treatment options you have. If you don't get a straight answer then politely say goodbye and find a new doctor/rheumy. You should be considered for rx of Plaquenil and maybe even Evoxac if your dryness issues are significant enough that interferes with your quality of life.
I would also see someone about the lymph nodes and get that evaluated properly.
Why are they checking kidney and liver that frequently? Are there indications on other labs that you have kidney or liver abnormalities?
Reading other threads can certainly be helpful, but you have some genuine questions that should be addressed right here. I hope that our regulars (and others) take a minute to offer some suggestions as well (on this thread...for you).
Please keep us posted. Take care.
Thank you all for welcoming me......
As far as I know liver and kidney checks are because possible Lupus.
I am waiting to see if my thyroid will at some point come out low (TSH and Free T4)
when she puts a diagnosis it is always Hair loss and fatigue
I have seen a cardiologist and a general surgeon
one for heart of course and one for swollen glands....
It seems like things have went on a spiral downward and Its frustrating that I cant
even get a diagnosis.
I only knew to look up Sjorgen because I saw it Positive on my labs
I have requested a copy of all lab work from the Endo and Rheumotolgist
...I wish No One would ever have any diseases but it is nice to have people to talk with and help me
understand.
I am only on Mobic, until recently it cause a stomach ulcer.
its strange cause at 39 I never thought I would feel so rough.
I had, had several problems but when my hair became so brittle you couldnt brush it and was falling out
I knew something more was going on than stress or a virus or just your tired from your kids.
Your small memory problems as they say were from lack of sleep
due to the fact I chase 4 kids around. Its hard to get people/ Dr.s to take you serious.
Thank you all so much for your support and answers/advice.
I wish you all well and will continue to post.
Much love and prayers to everyone.
Here is a link to the Sjogren's Syndrome Foundation and specifically to their page on symptoms. You can see that there are many symptoms and you seem to have a lot of them. Sometimes we have symptoms that are due to Sjogren's but we never realized they were due to Sjogren's until we read that they were symptoms of Sjogren's.
https://www.sjogrens.org/home/about-sjogrens-syndrome/symptoms
You can see that Sjogren's causes many, many symptoms. You can click on some of the other topics listed to the left and read about Sjogren's and treatment.
I agree with the others that if this Rheumatologist is not helping you, then you may need to find a new Rheumatologist. My Rheumatologist suspected an Autoimmune Disease just from my symptoms and a positive ANA the very first time she saw me. She ran a truck load of tests and started me on Plaquenil as soon as the SS-A came back positive, even before the lip biopsy was done. Plus, at that time, she also told me she was pretty sure that I had Sjogren's and put the diagnosis as Suspected Sjogren's Syndrome. When the lip biopsy came back positive, she changed the diagnosis to Primary Sjogren's Syndrome.
We have all heard that nonsense from various doctors that our symptoms are due to age, being overweight, anxiety, stress, chasing kids, emotional problems, etc. Not sure why doctors are so keen to write off symptoms but I think it just shows their ignorance. Plus, if they dismiss it, then they don't have to treat it or do anything about it.
Hope you can get the help you need and get a diagnosis and some treatment for it.
Autoantibodies directed against Ro/SSA and La/SSB autoantigens were originally identified in patients with Sj?gren?s syndrome and systemic lupus erythematosus (SLE). Subsequent studies showed that anti-Ro/SSA antibodies may be present in patients with other autoimmune diseases, including systemic sclerosis, idiopathic inflammatory myopathies (IIM), primary biliary cirrhosis (PBC), and rheumatoid arthritis (RA). Additionally, anti-Ro/SSA antibodies (with or without anti-La/SSB antibodies) identify pregnant women who are at increased risk of having a child with neonatal lupus syndrome. Anti-Ro/SSA antibodies may also be the only autoantibodies present in a subset of patients with ?ANA-negative? SLE. (See "Neonatal lupus".)
The anti-Ro/SSA and anti-La/SSB antibody system and the clinical significance of these antibodies are reviewed here
www.uptodate.com/contents/the-anti-ro-ssa-and-anti-la-ssb-antigen-antibody-systems
Anti-Ro/SSA and Anti-La/SSB Antibodies
Antibodies to Ro/SSA and La/SSB are most frequently detected by solid-phase immunoassays.28,29 Anti-Ro/SSA and anti-La/SSB have been detected in high frequency in patients with Sj?gren?s syndrome and in SLE, but also in patients with photosensitive dermatitis, and in 0.1% to 0.5% of healthy adults.
Anti-Ro/SSA antibodies are found in approximately 50% of patients with SLE. (See Table 2, p. 17.) They have been associated with photosensitivity, subacute cutaneous lupus, cutaneous vasculitis (palpable purpura), interstitial lung disease, neonatal lupus, and congenital heart block.
Anti-Ro/SSA antibodies are found in approximately 75% of patients with primary Sj?gren?s syndrome (see Table 2, p. 17), and high titers of these antibodies are associated with a greater incidence of extra glandular features, especially purpura and vasculitis. By contrast, Ro/SSA antibodies are present in only 10% to 15% of patients with secondary Sj?gren?s syndrome associated with rheumatoid arthritis. Therefore, the presence of Ro/SSA or anti-La/SSB antibodies in patients with suspected primary Sj?gren?s syndrome strongly supports the diagnosis.
Approximately 50% of patients with SLE who have anti-Ro antibody also have anti-La antibody, a closely related RNA-protein antigen. Similarly, most patients with Sj?gren?s syndrome also have anti-La (SSB) antibodies. It is exceedingly rare to find patients with anti-La antibodies without anti-Ro antibodies.
In my opinion, the indications for ordering an anti-Ro/SSA and anti-La/SSB antibody tests are as follows:
Women with SLE who are pregnant or may become pregnant in the future;
Women who have a history of giving birth to a child with heart block or myocarditis;
Patients with a history of unexplained photosensitive skin eruptions;
Patients strongly suspected of having SLE but who have a negative ANA test; or
Patients with symptoms of xerostomia, keratoconjunctivitis sicca, and/or salivary and lacrimal gland enlargement.
http://www.the-rheumatologist.org/details/article/873239/Know_Your_Labs.html
So much information to take in....
Thank you all so much, I will be up pretty late reading all of this
as it is so interesting.
Welcome justme,
Wow, 4 kids......I'm tired just thinking about it. I have three grandchildren who are now 14, 11 and 6, and over the years they have been fun but exhausting.
Of course I'm not a doctor, and nothing I say is 'medical', but I've been reading and sharing here for some time.
One thing I've seen is that the treatments for the autoimmune part of autoimmune conditions are pretty similar. The biggest difference in autoimmune conditions (in my non medical opinion) is that they sometimes affect different parts of the body. But most conditions can affect most parts, as well.
So the biggest issue is usually how well the first treatment can control symptoms, and treatments are added as needed. But generally, and again this is NOT medical, the treatments aren't THAT different for different autoimmune conditions.
Part of the reason for that is the fact that our immune systems are highly complicated and not completely understood. Treatments generally try to 'turn down' the autoimmune feature of our bodies and often also turn down our immune system. So many who are being treated for autoimmune conditions with specific drugs are often 'immune suppressed" which may make it easier to get ordinary illnesses.
The key is to get what you, specifically need. And some, in fact many, do not produce the factors that show up in tests, even tho' they clearly have behavior of their Immune System which has to be addressed.
Good Rheumatologists are finely tuned to each patient, and completely aware of the complexity of the conditions AND the variability of their patients. Many of us do not react to drugs and treatments the way the majority of people in the clinical trials react. Some times the drugs don't help us at all, and some times our bodies reject them.
A drug that helps one of us, may do nothing for another, and be very unpleasant, if not downright toxic to a third.
That's why we share so much, support each other, but also caution that keeping a journal of your daily symptoms and treatments can be very valuable in determining what is going on.
We are here, some of us have more than one condition, and we can offer support, advice and sometimes cheer.
People who have uncomplicated autoimmune conditions don't usually seek support and information. I was diagnosed with Sjogren's for 8 years before I started looking to see if it was connected to other things that started showing up.
I learned so much, justme, and have found great information that has truly improved my health.
Welcome, keep us posted.
Hugs, Elaine
Thank you, I am going to start keeping a journal.
I really started looking for people with the same stories or same problems
I was and am tired of feeling alone in all of this and not having anyone that understands
how truly tired and achey I am. Thanks you again.