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Blood tests are negative but have symptoms

I have many of the symptoms of MG- loss of muscle strength around my mouth, sometimes trouble chewing/swallowing /drinking water some slurring of words but the blood tests are negative. This all started after I had a small amount of Botox around my mouth back in November where I was very numb and then these other symptoms started in Dec. I have been to two neurologists( one was very dismissive) and the other who tested me for MG. I am about to go to a 3rd next week at Georgetown Univ. I had nerve testing done which was negative. I also went to a PT who specializes in issues with facial nerves who feels like it is more of a central nerve issue. My MRI was also clear. My symptoms are worse when I am generally more tired. Any doctor recs or ideas would be appreciated. I was also interested in finding out if I could still have MG even if the bloodwork was negative.

  1. I am seeing a Dr. Gambheri this week at Georgetown and will mention these to her. I did see that there is a Dr. Kaminsky at George Washington Univ. hospital that specializes in MG. Has anyone on here seen him?

    1. I do not see that name mentioned in any forums. However, it isn't often people say their doctor's name. Kaminsky could be a great doctor to be seen by, as they are familiar with MG and the head of the neurology department at George Washington, meaning they are connected to other individuals who could influence their knowledge/approach to MG.

      - Jodi, Team Member

  2. Hey, I just left this comment for you on the other discussion: "Have you received imaging to check the thymus gland and whether it is larger than average or has a growth, a thymoma, https://myasthenia-gravis.com/imaging-tests. Mestinon can also be prescribed; if you see improvement, it helps confirm a diagnosis. Not all people with MG respond to mestinon. This page is not always current info, but it could help lead you to an MG doctor, https://doctor.webmd.com/. Typically it can be challenging to get seen by a new doctor soon, plus finding one willing to treat MG. Call around as much as you can and emphasize the severity of your condition untreated and the risk of a Myasthenic crisis, https://myasthenia-gravis.com/crisis.
    Botox is scientifically known to potentially trigger MG symptoms or a crisis, https://myasthenia-gravis.com/clinical/botox.

    Did the MRI show no thymoma or residue? And to confirm, the blood test you had checked for the presence of AChR, MuSK, and LRP4 antibodies? - Jodi, Team Member

    1. so are the blood tests I mentioned the tests you were referring to?

    2. The blood tests you mentioned were checking acetylcholine receptors (AChR).

      They were not for (1) muscle-specific kinase (MuSK) and (2) low-density lipoprotein receptor-related protein 4 (LRP4) tests, antibodies that can also cause MG.

      - Jodi, Team Member

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