Firstly, Welcome to Ben’s Friends.
I too am a neuro patient (with very little patience ) I tend to get bouts of symptoms fairly much on a daily basis. My symptoms tend to fluctuate massively from one day to the next. My wife has hit the ‘Panic Button’ a few times, taking me to hospital, only for them to send me home with painkillers tsk. I now look for a progression of symptoms. For me, a headache, that’s normal. But if that progresses to numbness that’s a bit more concern. If that progresses further to nausea/vomiting it’s time to act. These are my signs and over time (years) I’ve learnt what is ‘Normal’(as if any of it’s normal) and what is an ‘Act NOW’ situation. You too will learn your signs.
I’m in Australia and here we have GP’s or general practitioners (Basically the same as your PCP), then we have physicians, then we have specialists, then specialist surgeons. The GP’s are usually fairly good at your normal everyday medical needs. If they know which specialist maybe appropriate they often will make referrals direct to the specialist and miss the physician altogether. The physicians role is as an investigator in more complex matters, such as your own. They can order test, scans and reports and collate all of the relevant information, examining the whole ‘You’ rather than individual concerns. Reading through your list of symptoms, each one could have it’s own individual diagnosis. For example you say to you PCP ‘There’s something wrong with my eyes…’ so he sends you to an optician OR ‘I’m having a rapid heartbeat…’ so he sends you to a cardiologist and both things are looked at in isolation rather than as a part of a whole list of symptoms.
The other good thing about a physician is that they can talk to specialists on the same level. Sometimes our information can be interpreted as hearsay. But if that same information is from Dr to Dr it’s often accepted more readily. I’ve lost count of how many of ‘Those looks’ from medicos I’ve received when I’ve tried to explain some of the weird symptoms. Often physicians have their own network of specialist they use, so that dr to dr rapport is already there and established. This can help in the transfer of information. Some specialist can be a little protective of their specialisation ie ‘I’ve made a diagnosis and my diagnosis is CORRECT!!!’ Having a physician between the patient and the specialist can insulate us somewhat. From my experiences specialists DO NOT like being questioned by patients (They can get rather anti about it to be honest ).
I’d recommend you get yourself a physician or a medical advocate at the very least. I too was told my ongoing symptoms weren’t related… …until they were. The dr came out with the line ‘Ohh look what we found…’ as if it was all something new. I’d been telling them there was an issue. The attitude was ‘We operated, we fixed’ and yes they had fixed one issue, but the fix unearthed another.
Please don’t give up. If you know something is wrong, then what is it? Follow it up. It can be a long hard journey but remember you know ‘You’ better than any medico.
Merl from the Modsupport Team