Quote:
Originally Posted by EnglishDave
The ONLY Neuro I ever had success with was a headache expert. I was actually in his Clinic for Neuropathic Facial Pain/Paresthesia and TN caused by an arterial knot round my Trigeminal Nerve when I suffered a headache attack in front of him - as I had suffered for years (8 times a day, every day), thinking they were just part of the TN. He immediately diagnosed Chronic Cluster Headaches and put me on Topiramate - which also helps with the Neuropathy.
Unfortunately, at my next appt 6 months later he was gone, moved on to another Trust as is the pattern amongst Neuros down here. You never get to build up a relationship or rapport with one, and each has their own ideas and pet medications.
But it sounds as though your guy is at least reliable and stable, and you are a repeat patient so there is foreknowledge. All this counts for something, I'm sure. Just don't go in with a preconceived result in mind, and try not to drown him in information so he feels forced into a dx. Better to spoonfeed facts slowly as he is amicable, rather than seem pushy.
Dave.
|
This is very wise advice Dave. Sometimes I think I'm too convincing for my own good at these consultations. The result is that they get my hopes up with a verbal diagnosis and then change their position if tests dint correspond. My rheumatologist comes out with lines like "we treat the patient not their blood" but if the blood doesn't support the symptoms they just back away.
That's lousy about the lack of continuity - I would hate that. The two consultants I had last weekend I will probably not see again but having people come fresh to my case was actually pretty helpful in this instance.
I'm not sure if my behaviour is exactly pushy but I think I'm very believable in person. I would hate to live in the south now from a health perspective. This neuro has apparently always worked in the same hospital and he does seem good but I was disappointed he didn't stick to his guns over this being immune mediated small fiber neuropathy. I don't believe in idiopathic as a term that is acceptable.
For me it's a no brainer that my neuropathic symptoms are part of the inflammatory process because of my ESR. I mean how could this be sitting at 78 now if I have no infection, no visibly swollen joints and all my pain is in my connective tissue? It has to be either in my nerves or in my blood vessels or in both. My guess in that it's the latter, both, and that I have some kind of vasculitis. But 'm trying hard not to suggest this to them and just present them all with the saline facts.
This approach has only got me so far though because they need evidence as supported by bloods, X-Rays, MRIs and nerve conduction plus skin biopsies - which they don't get from me - ESR and CRP aside. Lumbar picture went badly wrong so results contaminated by trauma. I would have a other if I thought it would help but after 7 attempts at tap I'd want convincing!
Mar x