Quote:
Originally Posted by Fran E
Ok, it seems that I will never be diagnosed. I have peripheral polyneuropathy for 1.5 years now. I tingle and twitch all the time - particularly at night when I get major body tics or twitches. I have also had every test known to man - spinal tap, MRI, CTScan, blood work of all kinds, lip biopsy, muscle biopsy and now a nerve biopsy. None of these have shown anything except the muscle and nerve biopsy which show demyelination/remyelination and some inflammation but not enough to diagnose vasculitis. Also of course the nerve conduction tests which show problems, getting worse over time.  I have various other symptoms too - dry eyes, exhaustion, trigeminal neuralgia, raynaud's - most of which have led dr's to thinking that it was autoimmune, probably Sjogren's. However, none of the tests for these autoimmune diseases have confirmed it.
So, at some point do those of us who have had every test in the world and nothing conclusive come back have to resign ourselves to never knowing why we have neuropathies? Or do we keep on trying - perhaps repeating all the tests over and over? And if we are never diagnosed, how can we ever know what to expect in the future? |
Fran,
I absolutely empathize. I keep going back and forth myself and I've been dealing with this for only half the time you have. I actually asked my Neurologist that exact question. When do we get to the point where we just say here's what helps and it doesn't matter what name we put to it? On the one hand I feel that there is power in being able to say I have such and such and to be able to explain somewhat to people what that means. On the other hand, once you have a label it complicates a lot of things- especially with congenital disorders that cannot be fixed. Maybe someone who has suffered for many years without a diagnosis and finally got one can add more insight into how it has/hasn't helped them. Any thoughts?
DL