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Living with an Autoimmune Disorder: Struggling to Get a Diagnosis

Annikaz

690d

Hey. Not sure if anyone here relates but I have an autoimmune disorder and for the past year or so I’ve been convinced I have lupus. Doctors won’t say. Recently my hands have started to shake more and I’ve noticed my ability to open things like a jar or a bag of chips has gotten a little more difficult…. Not sure if anyone else has experienced this?

1

9

9

Lethargy

Diffuse connective tissue disease

Systemic Lupus Erythematosus (SLE)

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Top reply
    • 100Percent_K

      688d

      Yes I have tremors- mine are essential (meaning of an unknown cause) tremors because they are not believed to be genetic

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    • 100Percent_K

      688d

      Yes I have tremors- mine are essential (meaning of an unknown cause) tremors because they are not believed to be genetic

      1

      Reply
    • MadamKay

      689d

      It took me a while to pinpoint my diagnosis as well and seeing several different doctors. Try seeing a specialist like an Endocrinologist or an Allergist. An allergist or ENT may not be able to treat what’s going on with you but they are likely to pickup on anything that may be off with your body and levels in your body. I have tremors and I have hypothyroidism. Honestly your triggers can be related to anything atp but it’s best you get tested for everything.

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    • Dad.of.Many

      689d

      Ask for specific tests for Lupus. If they ask why tell them it is for your peace of mind because nothing else is working. You have the right to ask for specific blood tests. Had I not asked for a specific test years ago they never would have found out about several problems I have that are all connected to that issue. Now they are all being treated with proper meds.

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    • RainbowPearl

      690d

      Lupus can be detected with a blood test. You have the right to ask for certain tests. I have an autoimmune disease and have similar symptoms to you. I'm undiagnosed still and I'm seeking a second opinion now. I would encourage you to ask for the test and see a different doctor. Also you might want to consider an neurologist.

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      • Annikaz

        690d

        @RainbowPearl thank you for responding! I’m currently seeing a specialist up at Boston childrens. My ANA is slightly positive which is the test they use to diagnose lupus. Since it’s not extremely positive test result I think she’s trying to look at different stuff. But it feels like I’m getting worse and no doctor wants to confirm what it is. Ik lupus is tricky so I get it, but I just want an explanation to why my body sucks lol

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        • RainbowPearl

          689d

          @Annikaz I totally get it. I keep getting worse and no one knows why and I just want an explanation. I was fine one day and a wreck the next. You should still feel free to get a second opinion. The more heads on a problem the better. A good doctor will tell you where to go to get a second opinion and why they recommend them. Hang in there. I know it sucks but you're tougher than you're disease.

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    • Keke313

      690d

      Hello I would look into a different doctor so that you can get some answers! I have experienced those symptoms and I have rheumatoid arthritis and it can be confused with lupus. I hope you find a great doctor It took me years to figure out what was happening.

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      • Annikaz

        689d

        @Keke313 I see two specialists. Ones at Boston childrens so I thought she would be able to find what’s wrong. She hinted at it possibly being lupus when I saw her last year, but has since never mentioned it again. I look at the symptoms on google and I experience most if not all of them. I’m just tired of constantly telling my docs all this stuff that my body is doing and them just wanting to monitor it. They’ve been monitoring it since 2013…

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    • JessFbubz

      690d

      I’ve never experienced this, but if your doctor isn’t willing to help or listen when you are concerned, go get another opinion. We know our bodies better than anyone else, so if you feel something is off, it’s worth talking to another doctor.

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☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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