Resources for those not getting adequate treatment

Hi, I’m 26F and have been dealing with intermediate uveitis since May 2023. I’ve had a trickle down of neurological symptoms since March 2023, new/worsening symptoms over time are severely affecting me and my life. I was on a low dose of prednisone up until October 2023, which helped subside the eye inflammation but did not clear it and I experienced new eye symptoms while I was on it. I am still having disruptive floaters/snow vision, fireworks/glittering, blur/haze, sometimes sharp pain and double vision.

Lumbar Puncture in July 2023 with lymphocytic pleocytosis, elevated CSF igG index, CSF Oligoclonal bands. Repeat LP in October 2023 revealed 6x higher inflammation, negative for infectious viral/bacterial/fungal causes. MRI with small non-specific non-enhancing bilateral subcortical hyperintensities in frontal lobes as of August 2023. Clear thoracic/cervical spine MRI as of August 2023. No blood inflammation or abnormalities other than elevated beta2glycoprotein antibodies. No abnormalities on chest/abdomen/pelvis CT. No previous medical conditions, events, surgeries or hospitalizations.

I have not had any testing on my eyes other than photography.

Doctors are currently unwilling to provide further treatment for the inflammatory immune response that I am having because they don’t know the ‘exact cause’ and because my findings/symptoms do not fit clearly inside of a diagnostic box. I am just getting worse and my symptoms are not improving at all. I’m not able to live a normal life and don’t know what to do/where to go from here – I have sought multiple opinions from various specialists. I am on state Medicaid insurance, so I cannot afford to see anyone outside of my state.

Are there any resources available for this type of situation or universities/clinics that would be willing to evaluate me as a patient outside of my state (VA) that would be more knowledgeable/better equipped to deal with a complex case?

Answer: Hi, so sorry to hear your story of obstacles to care.  I think this is more of a clinical question and needs to some clarification on your history so I would ask that you provide your email so we can communicate.  Please use the conus link on and email the support group link.  Thank you.  Frances Foster NP