u/BrenaynayRenee

Hello! I’m looking to see if anyone else has similar experiences. I have hEDS, MCAS, narcolepsy, cervical dystonia, headaches/migraines, urticaria, orthostatic intolerance, and was recently diagnosed with nutcracker syndrome.

What’s really concerning to me is I started having seizures in February. Not long after I began having spasms non-stop in my right leg. I take muscle relaxers to sleep. EEG was clear and my neurologist dismissed the ideas of PNES. Last time I went to the ER for a seizure event my potassium and electrolytes were bottomed out and I was essentially locked up (couldn’t move on the gurney for over an hour). Once I could move again it induced seizure like convulsions. I now drink electrolyte drinks daily to prevent that.. but what is happening? I’m unsure if my nutcracker syndrome is causing the leg spasms, or the seizures or what is what anymore.

My blood work flags stuff but not enough for any other solid diagnosis so my Rheum just concludes mixed connective tissue disease. I always have a positive ANA. Ugh.

My rheumatologist has been working with me to find some diagnostic answers and I just got some bloodwork back—with comments suggesting specific tests.. I’ve had a lot of bloodwork done in my medical history but that is a first for me. Has anyone else experienced that? I’m curious if it’s standard procedure for the specific test or if they saw something on their end that would prompt them to continue testing.

Specifically test done was: GAD65 NEUROLOGICAL SYNDROME AB TEST

Recommended: anti-Hu, anti-Yo, anti-Zic4, anti-CV2, anti-Ma1, anti-Ta, anti-Ri, anti-Recoverin, anti-VGCC, anti-VGKC, anti-Amphiphysin, anti-G-AChR, anti-NMDA, anti-LGI1, and anti-CASPR2.

I’ve been struggling with seizures, unintended weight loss, persistent headaches, persistent leg spasms, chest pain, difficulty breathing, heart palpitations, blood pressure fluctuations, and probably more I can’t think of cause of brain fog. I have hEDS, just got diagnosed with nutcracker syndrome, dystonia, MCAS, and narcolepsy. I just went to the ER via ambulance Sunday because of seizures and then I couldn’t move my body—my potassium and other electrolyte levels were low.

I’m so frustrated and tired.