Hello fellow neuro talkers,

I come to you in desperate need of help and guidance due to a mix of perplexing symptoms over the last 8 months in-particular (However I do feel like this is something than began around 5 years ago, but symptoms settled for some time).

My initial set of symptoms began in 2011, with the onset of the following symptoms: burning dry mouth, numbness and tingling in arms, burning pain in shoulder, severe lower back pain, rashes & onset of extreme depression overnight. I was tested auto-immune due the number of conditions in my family (Lupus, Neuro Bechets & RA), but the settled on a diagnosis of depression and after around three months the symptoms settled and I continued life as normal (numbness and tingling continued periodically but didn’t affect my life as such).

Fast forward to 2016 and the symptoms seem to return and then some. All of the symptoms above returned but with some more nasty symptoms, including drying of all visible passages throughout body, swelling of cheeks in face, numbness on right side of face, loss of taste, sexual dysfunction, extreme coldness in hands and feet, sudden onset of a lot of eye floaters facial flushing, waking in the middle of the night with my heart rate going through the roof, extreme sweating through the night, electric bolts throughout my body, constant itching, intolerance to alcohol (and the list goes on). To accompany the symptoms I once again came down with severe depression overnight, it’s like the level of something changes in my body and I turn into a person I do not recognise (outside of these two occasions I am a very positive person and it’s never been a demon I’ve struggled with).

Once again the medical investigations began, firstly with the doctor suggesting the symptoms were caused by a sinus infection, secondly referring me to a rheumatologist (who did blood tests for Lupus & Sjogrens) and said there was categorically no sign of auto-immune and wanted me neurologically tested. Prior to seeing the neurologist I underwent Nerve conduction studies and an MRI (both clear). The neurologist has ruled no sign of any neurological damage and has suggested something has upset my nerves which has resulted in my depression & anxiety. I sought a second neurologist opinion as by this point I had looked at symptoms online prior to the appointment and felt quite convinced that the cause behind this was sjogrens, in particular neurological damage by sjogrens (my reading online always leads me back to Ganglionopathy, as the symptoms described seem to fit). The second neurologist disagreed with this assumption and said I showed no symptoms of autonomic dysfunction he would expect to see (issues with heart rate), and came to the conclusion of a “brain stem mediated central pain hypersensitivity syndrome” and prescribed anti-depressants. Four months after beginning the tablets I am still in the same position in terms of symptoms, I am managing to work every day but my quality of life is not very good. There is no other options for me in terms of medical assistance as the NHS has referred me both to a rheumatologist and neurologist. The only option I can consider if going private to a rheumatologist and requesting a lip biopsy but it is not guaranteed they will give this to me, especially as two doctors have suggested it’s depression.

I understand that a lot of the symptoms I have explained can link to depression but I believe 100% that there is something further causing this. Has anyone had any experience with the symptoms listed above in relation to Ganglionopathy? And also experienced depression alongside it?

Thanks so much for your time in advance,

Warm wishes,

Kirsty