Neurology refuses referrals for CFS patients

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the referral made by my university dr to the neurology dept was refused by neurology stating that they do not treat CFS patients. has anyone else experienced this?

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.
 

Wishful

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I think I can understand their refusal. So far as I know, at this time there isn't anything they can actually do for ME/CFS. Re-submitting the referral for an accepted neurological condition might work, since it doesn't matter what might be causing the condition. For that matter, no one can prove that the underlying cause is ME/CFS.
 
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I think I can understand their refusal. So far as I know, at this time there isn't anything they can actually do for ME/CFS. Re-submitting the referral for an accepted neurological condition might work, since it doesn't matter what might be causing the condition. For that matter, no one can prove that the underlying cause is ME/CFS.
Yep, that sums it up. Its unfortuneate but thats what we are up against
 
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A neurologist told me “ I do not touch a Cfs patient with a 12” pole ( something like that). My husband was in a consult and I asked him if he treated patients and that was his answer.
 
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thanks @Wishful, everyone.

access to care and appropriate care really are big issues. i wonder at my primary care doc's naivete in pushing the referral. it is such a mess out there in me/cfs land.

the funny thing is that i had left a community doc who, rather than telling me to go to the university system, referred me to a community neurologist who basically told me there was nothing he could or would do and we decided to un-bill the encounter. i just thought i would have better luck with the university.

in any event, i am not going to let it be - if they don't honor a referral for neuropathy, i will escalate the issue. will report back...
 

Stretched

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After running the gamut of GP's in the local area with almost nil CFS knowledge (nor interests) I picked a neurologist
(with multiple med degrees) near a major hospital/doctor complex . I had prepared a tome of point-making research for him to review at his leisure, for the purpose of thoroughly informing him of my condition(s) and to establish credibility for my requests.

The long and short of the visit was that he had never seen anyone with CFS but that he had heard of it! He gave me
a script for a spinal tap and other test workups. I left but didn't follow through with his pioneering-like efforts. Too iffy.

Frustrated again, I paid upfront at a VIP concierge practice, and ended up with little more than costly lip service and basic tests. I did get my requested scripts filled for a year but did not renew for more wasted time and energy.

In searching out yet another candidate PCP I again came across the above neurologist. This time he was listed as an ME/CFS specialist! Now, about cynicism... .

Addn: Also, just met with a new GP. He, too, was unknowing about CFS. He had ‘heard of it.’ I almost exploded when he recommended exercise!!!
 

Research 1st

Severe ME, POTS & MCAS.
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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.

:hug:
 
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Timaca

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I've seen several neurologists, because I have a LOT of neurological symptoms...in fact I started with the neurologists (after my PCP) because I had so many symptoms. But they weren't helpful. I passed all the tests they had for me. They could not explain my burning, sparking, crawling, goose bump feeling nerves all over my body, all they time. Nor could they explain my foggy brain, or feeling of disconnect, etc.

I was just thinking today how odd I would sound to any doctor if I tried to describe my burning sparking crawling nerves: "My right temple and right waist feel like ants are crawling on me, my forehead and left hand are tingly. My right chest feels pin pricked. My left wrist and left chest feel like ants are crawling on me. I feel like my back has goose bumps." And on it goes, day after day. One neurologist described it as : Multifocal, migrating, sensory distortion. Yep. That sums it up. Most doctors look at me very surprised if I describe how I feel......

I'm glad I made the effort to see them, but they could offer me nothing.

In my case, I think it is infections that have set off my CFS, and probably are even perpetuating it.

And last time I tested wheat, I had a substantial increase in shooting nerve pain, such that I haven't eaten wheat since.

I wish you the best as you seek answers.
 

Wishful

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Before I knew about ME, I thought I had some rare form of chronic neuroinflammation. I did see a couple of neurologists. They did their standard tests, and said something along the lines of: 'Sorry, can't think of anything else to do.' If you have an accepted neurological condition in addition to ME, you should be able to get services for that if you don't mention the ME. If it comes down to the doctor saying that he can't figure out why you have the neurological disorder, then you can mention having ME, and that since no one understands all that's involved, it could cause neurological disorders. He should still be able to prescribe treatments without knowing for sure what the cause is.
 
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@Wishful, thanks for the advice - i am hoping that perhaps they will be able to at least document some of the neuropathy, for example the loss of skin sensation should be able to be seen in the standard skin punch tests described in this page: http://practicalneurology.com/2009/10/PN1009_06.php

it's probably the one test that i would have results on as my OI is not bad enough often enough to be measured (though i have broken ribs while greyed out). i am hoping it will be useful to document disability, when that becomes necessary, and also, more immediate, to be able to qualify for a handicapped permit.

@Research 1st , i resonated with your description of the state of things. i did go to stanford and do the MRI study a few weeks ago. my doc is working on getting access to the tests/scans/results. it's true, the skin biopsies may not be diagnostic, but it sure feels like they should be...
 
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Stretched

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