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I have been having issues since a twin pregnancy in 2014. A lot of fatigue, anxiety, migraines etc. I saw primary who ran blood tests which came back for positive ANA, so refered to rheumatologist and after meeting with her she said she doesnt have any reason to think I have any autoimmune problems and ran some blood tests. Well I get called in for test results that conclude sjogrens ss-a and ss-b positive with a count of 8.0 AI on a scale thats 0- .9 she said she was shocked to see these blood test results after meeting with me before and appearing so healthy.

I do not believe I have sjogrens because i have absolutely no issues with tear ducts salivary etc actually have been battling issues with sweatiness so that would probably rule sjogrens out.

I do however have(always worse before my menstrual cycle)

Much fatigue all the time Im flat out exhausted and its not the two year old twins I can barely lift my arms some days without it feeling painful,

anxiety(that everyone wants to put me on some antidepressant i am not sad i am anxious shaky sweaty brain fogged up)

Before menses terrible migraines and sudden sharp pains in my head very sharp like Im being stabbed in my eye, cant find my words even jumble words,

knees and wrists ache badly. (No swelling or heat mainly only near menses)

HBP since pregnancy treated with propanolol(dizziness dunno if from propanolol or from some internal issue happens when i move my head left to right or up and down like an elevator type feeling)

PVC's concluded from 24/hr holter monitor

During pregnancy inflammed burning hands and a sore that just would never go away in my mouth. Finally healed after treatment with peroxide. ..

I am just wondering if this is some sort of lupus manifesting, currently much worry about my heart(which could just be anxiety) my kidneys, and neurologically what is going on. Im tired of being so weak all the time! is there any tests I can ask for specifically to see if this is damaging my body more inside than outwardly.

Thank you

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8 Replies

  • Posted

    Poor you. I am so sorry you are going through this. Especially with 2 young babies to look after. I have been diagnosed with Behcet's for 12 years now. This is similar to your disorder. Behcet's....Lupus.....Sjogren's ....they all have similar symptoms. A lot of overlap between them. I was first suspected to have Sjogren's.

    So likewise the treatment for all is pretty much the same. I think in the end it almost doesn't matter what name they give it. They are all forms of vasculitis. The migraine you are suffering is a classical vasculitis migraine. And yes, many of us are worse around menstration time. Many of us react badly to overly hot, humid weathef ....like me. Though gor otheds they may react worse to cold.

    What sort of medication have you been given? Tell me why you are worried about your heart? Vasculitis can affect the heart kn many ways so.e of them very superficial. It may be that once you are treated any heart issues you have settle. But you need to be checked fully. We can get lots of chest pain for different reasons like costochondritis for example. Inflammation of the chest wall.

    Has any treatment plan been worked out for you?

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    • Posted

      Oh man, i am so new to this and with test results it appears that like you said they are all so similar that makes the drs job more of a guessing game rather than without certain this is the diseases. That is frustrating. I currently am only on blood oressure meds, my primary keeps suggesting SSRIs but I have had bad reactions to some of the most common buspar and prozac.. I become a zombie. So for now no medication my rheumatologist is waiting for me to have symptoms otheriwse she is seeing me in three months to do more tests yayyyy 😷

      Im so sorry you have gone through this and anyone else who is suffering physically and emotionally from whatever it may be they have going on. Ive been told im lazy on far too many occasions because of this fatigue I feel almost everyday. I manage by sitting frequently so I appear to be lazy.. Some days i feel strong as an ox.. Its so confusing.

      As for my heart... The irregular heartbeats I have I am unsure whether its normal weve already dont a holter and only said I have pvcs and to not worry but cant some

      Imaging tests be done to see if my heart is ok? I have times when it almost feels like my heart is stopping or sharp pains from time to time. That cant be normal.

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    • Posted

      You can have imaging tests. That irregular heartbeat I get too. You can also get costochondritis or pericarditis which can affect you in that way. Common symptoms of this disease. Don't necessarilly think of the worst case scenarios. Meds may very well stop that from happening.

      I do not take steroids. Can understand anyone who does but I so far don't.

      You can take immunosuppressants which will help like mycophenolate or imuran. Maybe try something like that. Also please make contact with the Amerucan vasculitis association. They are great and very supportive.

      People look at us and think we are well so we must be lazy. This disease is invisible. Don't let their prejudice get to you. Xxxxx live strong and fight on. You are on the right riad now with your diagnosis.

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    • Posted

      Thank you so much for taking the time to reply with so much info it really makes me feel confident I have a good doc and she cares WHICH IS HARD TO FIND! I am going to see about vasculitis sounds like it very well could be. Going to check out the forums on here also. I just want to be prepared.
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    • Posted

      Oh yes for sure and check facebook too as there are great support groups onn there. Feel free to ask any questions if you are worried about anything. There are lots of people on here with Sjogren's who are very knowledgeable.

      I am currently on a great regime and symptom free. Getting a diagnosis can change your life. With the right treatment you can feel heaps better. Xx

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    • Posted

      Thank you for answering, yes I am still caught in that before diagnosis phase, a lot more tests to run but my Sjogrens came back the highest the lab will report. I only experience slight gritty type feeling in my eyes from time to time but nothing too bad, the fatigue is a bummer where they say joints ache it feels more like its my bones like my entire forearm and my shins and knees.. I just dont want it to get worse and where many say they lose weight.. I just cant lose a lb. ugh autoimmune is no joke. Has anyone heard of the herb Noni and heard anything positive about it helping with autoimmune?
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    • Posted

      no it's awful really. And just for the record...it always says weight loss is a symptom. Yeah right. I wish. It is the opposite for a lot of us! It can attack the thyroid. I have been a bit borderline for thyroid. Might be worth checking also. x

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    • Posted

      My thyroid has been tested and is right where it needs to be but I have heard the tests can be wrong, and to have my "thyroid antibodies" checked. So my next visit I will be having panals done as early AM as I can. Hopefully thatll come back with some answers as far as thyroid is concerned. Fingers crossed. >.<

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