it seems weird - i mean, i have extensive neuropathy and that *is* something that neurologist treat, almost exclusively, from what i understand. i have replied to my doc that the refusal seems strange and that they should put it thru again based on neuropathy.
What country are you in? If UK or Europe this discrimination is unfortunately common place in neurology as socialised medical health care systems have a monopoly on treatment. With no competition, they can't get exposed, especially if the medico political consensus (via psychiatry researching patients with depression and F48.0 CF) is you're neurotic and need CBT/GET to overcome deconditioning from anxiety based avoidance of life.
Have you been diagnosed with neuropathy by a neurologist using tests like a 1) skin biopsy, 2) nerve biopsy 3) EMG? If so, make a written complaint or try and get someone to write one on your behalf, read it then sign it. Even if they ignore it, there's then a record. Send it recorded post (signed for) then they can't claim it never got to them.
If you have no official neuropathy diagnosis, this is why they ignore you as they don't believe CFS is organic, because in their defence the government evidence using tired people, and no tests, of course, shows nothing as the cohorts of patients they look at don't have organic diseases and or even if some do, they aren't given up to date organic CFS based tests as they are kept locked away as research based.
So the next step in my view and if you want to and are able to financially and physically is to consider obtaining research based tests if you haven't had them and your conventional neurological tests are negative. BTW a skin biopsy for neuropathy, e.g. from an ankle site is not that reliable as it can only show damage in the area of tissue examined. They don't tell you this.
Tests you may not have had associated to pain presenting as possible neuropathy:
The pain might be central from brain cell inflammation (not tissue) from activated glial cells, mast cell activation, immune activation elevating inflammatory cytokines, infection, autoimmunity, vascular inflammation, lack of sleep making dysautonomia related central pain far worse and so no nerve damage is present....
Negative findings don't mean it's not real though it means you don't fit into a disease model of conditions you might not have -which is logical. MS patients would test negative for Encephalitis and ALL tests if no MS signs on testing existed. This is what happened historically. Relapsing remitting MS was treated as neurotic.
All I can say is I'm sorry, but the reality is that neurologists need hard evidence as they are used to dealing with conditions that demonstrate this and our disease (s) currently lack this unless you have specialist brain scans (FDG-PET for glucose & glial inflammation), MRS Spectroscopy MRI, SPECT for hypoperfusion etc) and then even then, any abnormal brain scan would be considered to be non specific - because the government won't offer these scans openly post diagnosis and if they do it's back to CF and depressed research only cohorts again, meaning the positive findings are never consistent and nothing shows up.
The government then use this to keep CBT/GET in place by fraudulently demonstrating CFS is not organic on neuro imaging due to the hopeless CDC criteria of CFS or the even worse British F48.0 Oxford criteria used by psychiatrists or other traitors to science and medicine.
We need massive funding increases or a breakthrough at the American OMF to change neurologists wide spread rejection of our organic disease (s) and until then, it's just a waiting game of trying to live out our lives as rejects and alleged somatizers.
The situation is it's only indirectly a physicians fault we are ignored. The key instigator is the CDC and their cruel 1988 legacy of creating CFS for this to happen to us in the first place. CDC themselves blueprinted the pathetic research direction, a twisted exclusion based criteria (all tests must be normal to be diagnosed with CFS!) and equally disastrous decades of poor funding.
None if this is our fault. It's the medico political mandarins who destined our future to be treated as disposable trash. What we mustn't do, is voluntarily climb into the garbage bin but continue fighting and never give up.