I have a very complex and distressing symptom history and although no medical professional has ever mentioned Neurosarcoidosis it is something that's firmly on my radar. There are many reasons for me to suspect neurosarcoidosis but I wont go into all the details here but feel free to ask me any specific questions if you think it's relevant. However, I will say that many of neurological symptoms are also MS like in nature.
A bit of history
Four years ago I was found to have a brain tumour which has been alternately described as a low grade glial tumor or DNET (a benign non-growing mass). I only know I have a tumour because I PAID a neuro to look for it! My GP had insisted I was just anxious and consistently dismissed my symptoms. This is why I was forced to go down the private route. But now that they know I have a tumour the national health service (I'm in the UK) is compelled to give me free biannual brain scans to monitor the lesion for growth.
Since the discovery of the tumor I developed other health conditions which led to Gastric investigations and a diagnosis of diverticulosis and "fatty liver".
At around the same I also developed a blood clot (DVT) in my lower leg.
I also had a chest x-ray for chronic upper back pain which revealed some lung scarring. My GP says it is nothing to worry about and is possibly from a childhood lung infection. This is nonsense, of course.
I have now been chronically ill with indiscribably horrible physical and neurological symptoms for the past 4 years. And I'm still being dismissed by my neurological who seems incapable of contemplating that I have a medical illness at all. All they do is scan me and tell me I don't have epilepsy. And, of course, now they are pushing me down the psychiatric route.
OK. So here are my questions.
It it possible for the neuros to be wrong about my brain lesion? Could it possibly be a brain sarcoid that is mimicking a brain tumor?
How about my lung scarring? I have never had TB or any lung infection. Where did this come from? Could I have had sarc in the lungs without symptoms in the past?
Fatty Liver? I don't feel I'm a candidate for this condition. Is it possible for liver sarc to be mistaken for FTD?
As for diverticulosis, I have heard this mentioned in the context of sarcoidosis before.
Also, can sarcoidosis cause blood clotting issues?
I also have visual disturbances similar to neuritis and recently acute tinnitus with hearing loss. Should also mention that I have also developed chronic vertigo and stroke like symptoms.
I'm sorry, I meant to keep this brief but nobody is helping me. Once the doctors get it into their heads that you're crazy the communication breaks down and hopelessness sinks in. I hate to go back to my GP for more specific referrals. I would rather beg and borrow and go to see a private neurologist again that deals with the rarer conditions. My experience has been that doctors only really LISTEN when you pay them to.
Any help or guidance would be appreciated. My situation is far far worse than I'm letting on here. Thank-you.