When have I seen enough doctors for symptoms
Hi, thank you in advance for reading my post. I am a 53 yr old female who has been experiencing constant movement and instability in my left side from my neck to my left hip. I also get a lot of heaviness in my shoulders. This makes it very difficult to walk or even sit up for very long. I have had extensive testing including MRIs, CT scans, Ultrasounds, 2 spinal taps, various blood panels for neurological and autoimmune disorders, and genetic testing. I’ve exhausted all avenues for an answer locally seeing multiple neurosurgeons, neurologists, rheumatologists, orthopedics and physiatrists. I’ve been to U of M where the neurologist told me I needed a specialist but didn’t know what kind. I then went to Cleveland Clinic and seen general neurologist, spine center, rheumatologist and movement disorder neurologist. All of my tests are either normal or not pointing to anything conclusive. For example, I have 3 herniated discs that abut the cord but no impingement, I have low lying cerebellum tonsils but no chiari, I have a low positive ANA Autoimmune test but all specific panels are negative, rheumatology says no autoimmune, I have oligoclonal bands in my blood and spinal fluid, neurologist says that means nothing and he’s 98% sure I do not have a neurological disorder. Ive had genetic testing for autoimmune and connective tissue disorders, all negative. I’ve been in physical therapy for over a year. There’s improvement but this is not gone. Cleveland Clinic has diagnosed me with Functional Neurological Disorder (FND) so I’m seeing neurophysiology, talking to a counselor who specializes in FND and am signed up for a 1 week intensive therapy program. These symptoms started after a heart ablation and/or covid vaccine. I can’t say either of these things contributed to this, and that’s not really my concern. I’ve calculated the cost and to date between me and my insurance over $600,000 has been spent trying to diagnose this. My question is when can I feel comfortable that I’ve done enough testing? Mentally I’m exhausted… I read articles about people pursuing a diagnosis for years but I honestly have nowhere else to go. I did apply 3 times with Mayo in Rochester but my application was rejected all 3 times with an explanation that there’s nothing more they can add. Thank you for your feedback.