Small Fiber Sensory Neuropathy - Empire/Blue Cross Clinical Recommendations

[John Day]

For those struggling to get a diagnosis, you may find this revealing.

This is a Blue Cross PDF instructing doctors to make every effort toward a diagnosis:

http://www.empireblue.com/provider/noapplication/f2/s5/t9/pw_ad084881.pdf

Synopsis of PDF:
(a) Small Fiber Sensory Neuropathy is "extremely under recognised"
(b) a doctor's indecisiveness leads to doctor shopping
(c) acknowledges "the importance of establishing a diagnosis where possible
(d) that "the explanation of the etiology of their pain problem is as important as the cure or relief of their pain"
(e) that prioritizing a diagnosis leads "to enhanced clinical outcomes"
(f) that SFN is "among the least understood of all neuropathies"
(g) that Restless Leg Syndrome is symptomatic
(h) that treatment is restricted to alleviating symptoms

 

[Stone]

Oh Wow, this is going to help me very much. Thank you so much for posting this! Film at eleven.

 

[Francelle]

It continually puzzles me that symptoms found in M.E. people are not given equal credence; whereas the very same symptoms found in another type of person (or a diabetic) are veritably acknowledged in terms of pain recognition, diagnosis and treatment.

Small Fibre Neuropathy is one such type of condition with its associated symptoms. This is what I have encountered at least. A neurologist I saw would not commit himself (in the absence of an IENFD test) that I had SFN even though, as I have since found out, the symptoms fit (and continue to fit) exactly. It's so frustrating!

In my mind it is necessary for each and all of these isolated conditions which make up the whole of M.E. to be adequately addressed and treated to improve the quality of life in M.E. patients. Thankfully I am now on Lyrica & Tramadol which helps the neuropathic pain.

Thanks for posting this, John!

 

[John Day]

Francelle, the next time a neurologist refers to an IENFD biopsy in Australia, please inform them that it does not exist despite the recommendations of this University of Adelaide PDF:

http://www.horizonscanning.gov.au/internet/horizon/publishing.nsf/Content/6B81AEB3E7EE0001CA2575AD0080F344/$File/Vol%2018%20-%20skin%20biopsy.pdf

I have contacted every reputable source in Australia to direct me to a pathologist, lab or research faculty that can conduct an IENFD test.
According to a consensus of well-informed experts from hospital neurology departments and universities as well as the major pathology labs, the IENFD test DOES NOT EXIST IN AUSTRALIA. (I have more to add to this later. For the moment, I am trying to post the research I have gathered. There are two small fiber specialists in Melbourne: Professor Tim Day at the Royal Melbourne Hospital and Professor Andrew Kornberg at the Royal Childrens' Hospital and once a month he might see an adult at St. Vincents.)

 

[Francelle]

I know it doesn't exist in Australia except under the odd research protocol which has cropped up from time to time - but rarely. It was I who raised IENFD testing with my Neurologist after he was humming and hahing about the possibility of me having SFN.

I have talked to Dr Penelope Spring a Neurologist from Concorde Hospital in Sydney, who would love to see its implementation. I sent her the Horizon Scanning link a couple of years ago and she was very disappointed to read the stance which the Australian Health Department has taken on this.

I have been keeping my ear to the ground for any changes to this policy but obviously you know the latest - which is STILL no implementation of this procedure.

I might PM you on this!

 

[John Day]

Okay, so we accept that there is no IENFD test in Australia and there is no indication of it being approved by Canberra anytime soon.

I think it is fair to say that the government is not interested in a test conducted in most advanced, civilized countries.

Little wonder that it is so vastly unrecognised in Australia. The objective seems to be to ignore the disease.

Does anyone have any statistics about the incidence of ME/CFS & peripheral neuropathies in Australia and in other countries?

Francelle, this was posted by Alex3619, It makes a very good point about IENFD not becoming the 'sine qua non of diagnosing small
fiber neuropathy'.

“Small fiber neuropathy should be suspected if there is distal limb
(lower extremity greater than upper extremity) pain or decreased pain
sensation,” W. King Engel, MD, director and professor of neurology and
pathology, Neuromuscular Center, Good Samaritan Hospital, University
of Southern California, Keck School of Medicine, Los Angeles. “I do
not do skin biopsy exams. I am concerned about false-negatives. Skin
biopsy abnormalities must not be the sine qua non of diagnosing small
fiber neuropathy. A careful clinical sensory exam for hypo- and/or
hypersensitivity, along with the history, is the best way to diagnose
a small fiber neuropathy. However, a punch biopsy of skin can support
the diagnosis of small fiber neuropathy.”

 

[Francelle]

I have sent you a PM (personal message). See notifications at top of page.

F

 

[Sallysblooms]

I wonder why they say you can't treat neuropathy? Odd. Just aleviating symptoms?

 

[John Day]

With small fiber neuropathies, the expert consensus considers the alleviation of symptoms the ultimate goal.
The reason that the disease cannot be treated seems to lie in a combination of the heterogeneity (vast number of variations) and the fact that the number of causes exceeds a hundred. The disease can be idiopathic, inherited, metabolic, immune-mediated or toxic. The disease is very poorly understood, but some variations exhibit fatigue symptoms in common with CFS. The Gold Standard for diagnosis of Small Fiber Neuropathy had not yet been established by 2008.

 

[Cort]

It requires lower extremities to be more effected than upper extremities???? I have the opposite actually - my upper extremities are more effected than my lower - although I don't the diagnosis otherwise anyway, actually ..

 

[Sallysblooms]

The goal should be to help the body and nerves to heal. Symptoms can be helped also. Doctors with knowledge about supplements can help the nerves hea, especially when caught early. Most do not know it and people suffer too much.