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Im frustrated with testing

I started with pretty extreme weakness in my legs and pain in my back and hips. My primary ruled out orthopedic causes and referred me to a neurologist. I am now seeing a neuromuscular specialist. So far all labs are seronegative and myositis has been ruled out. My first EMG showed impaired nerve conduction. I just had the single muscle fiber yesterday. My neuro is taking my symptoms seriously and started me on low dose prednisone, mestinon and lyrica for muscle pain ( I think the pain is from changes in the way I walk, tripping, etc) The treatment has helped and has allowed me to keep working- but I still don't feel great. The fatigue is real. I'm scared that everything will be negative and it makes me feel crazy. I just want confirmation and I am tired of waiting months between tests. Has anyone had this issue?

  1. Some MG folks are seronegative. Just keep pursuing. It took me a long time for anyone to even do the labs. I have had the feeling with a lot of physical issues that they won't listen or that tests will come out negative. It feels awful to welcome a positive test, but that is how we get treatment and also understanding that it is not in our heads! Be careful to look up your meds and read the info in your prescription to make sure those meds are not anticholinergics. I have had many doctors prescribe meds that make MG worse.

    1. Hello It's been 4 months since you wrote this post. Have you had any results from your neurologist? It took 3 months for my doctors to diagnose me with MG. To say the least I felt like a lab rat. I completely understand your frustration and being fed up with all the test just to be turned in a different direction. I hope by now they have found a diagnosis for you so you can start a sustainable treatment. I'm here to support you. Happy road to remission. - Jazmin (team member)

      1. So understandable

        1. Hey , Sending positive thoughts your way. We know how frustrating it is to go through all these tests and to feel like you're not getting answers, though I'm glad you were able to get a bit of relief from the treatment. Other community members may jump in to share their experience and diagnosis journey, but in the meantime I wanted to share a few stories of people with MG who have gone through similar situations. Please know you are not alone. Testing can feel like a really tiresome process and the emotions you are feeling are completely valid. Best, Lauren (Myasthenia-Gravis.com Team)

          https://myasthenia-gravis.com/living/discovering-diagnosis
          https://myasthenia-gravis.com/community-advocates/sally-farrier

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