A TRANSCRIPT OF THE “SMALL FIBER PAINFUL NEUROPATHY” DECEMBER 5, 2012

A TRANSCRIPT OF THE “SMALL FIBER PAINFUL NEUROPATHY”
FACEBOOK CHAT WITH DR. MARC TREIHAFT HELD ON
DECEMBER 5, 2012
Neuropathy Association: Welcome! Thank you for joining us today for our
“SMALL FIBER PAINFUL NEUROPATHY” Facebook chat hosted by
Dr. Marc Treihaft.
Dr. Marc M. Treihaft
Neuropathy Association: Dr. Marc M. Treihaft is medical director of the
Colorado Neurological Institute’s Neuromuscular and Peripheral Nerve Disorders Center. He is also
a professor of Neurology at the University of Colorado Health Sciences Center. Dr. Treihaft also
serves as the medical advisor for The Denver Chapter of The Neuropathy Association
Neuropathy Association: A COUPLE OF TIPS FOR HOW THIS FACEBOOK CHAT WILL
WORK:
1). If you haven't been to a Facebook chat before, here's the idea: the chat will take place on
www.facebook.com/NeuropathyAssociation.
2). Given the time and technology constraints as well as the high volume of questions asked,
we (The Neuropathy Association and Dr. Marc Treihaft) are unable to respond to all
questions and comments. Preference will be given to those questions with widest appeal and
those focusing on small fiber neuropathy. Please be sure to read through the questions,
comments, and responses already posted first before asking a question.
3). Please feel free to post questions for The Neuropathy Association and Dr. Treihaft that
you'd like as relates to the focus of this Facebook chat: SMALL FIBER NEUROPATHY.
You can also comment on other participants’ posts and comments. Dr. Treihaft will be
asking questions and sharing factoids on small fiber neuropathy too. And, be sure to chat
with each other as well—make some new friends.
4). We also encourage you to comment, share, and like posts…this helps us all, collectively,
to increase public awareness of and understanding for neuropathy.
1
5). Please also remember to hit the refresh button on your browser often to see updated
posts and comments on this page.
6). DISCLAIMER: The information provided in this Facebook chat is intended for use as
general health and wellness information. It is not intended to replace the personal medical
advice of your health care provider. Please discuss all treatment, lifestyle, and diet choices
with your health care provider.
Neuropathy Association: The following articles will help guide this conversation:
- Painful Feet: Small Fiber Neuropathies - http://bit.ly/SkQ7c9
- Proceedings of The Neuropathy Association’s Neuropathy Summit-Physicians Conference:
A Supplement to the Journal of the Peripheral Nervous System - http://bit.ly/KN3gZx
Neuropathy Association: Now, please join us in welcoming Dr. Marc Treihaft!
Dr. Marc Treihaft: Glad to be here.
Elyse: Are there specific tests to determine whether your SFN is
“Are there specific tests to
determine whether your
small fiber neuropathy is
autonomic?” - Elyse
autonomic?
Dr. Marc Treihaft: Yes, there are specific tests to determine autonomic nerve fiber
involvement in patients with SFN that are available through special clinics:
- Quantitative sudomotor axon reflex testing (or QSART) measures sweat output
- Tilt table test measures changes in blood pressure and pulse from when you are
prone (lying down) to when you are vertical (standing up)
- Cardiac beat-to-beat or R interval variation studies the autonomic aspects of
cardiac function.
Donna: What does SFN mean? I know the neuropathy part, but what's the rest?
Neuropathy Association: Donna, small fiber neuropathy (or SFN) is a form of neuropathy
resulting from damage to the small myelinated and unmyelinated peripheral nerve fibers
and/or autonomic nerve fibers that transmit messages to the skin, the cardiovascular system,
digestive tract, and bladder, among others.
2
Lucy: I have idiopathic small fiber neuropathy. I also continuously have positive ANA and
double strand anti-DNA, but no symptoms other than painful, burning feet. I have had so
many tests, but still there is no cause found. Should I have a test for a genetic cause?
Dr. Marc Treihaft: Small fiber neuropathy (SFN) may be associated with inflammatory
disorders. Your elevated ANA may indicate an inflammatory process. I do not recommend
genetic screening based on this limited history.
Jill: That's how my lupus first made its appearance. Painful, swollen, discolored toes and
positive ANA.
Bernadette: Wouldn't the high ANA and anti-DNA be positive for Lupus? I’m going
through the possible lupus causing neuropathy syndrome.
Dr. Marc Treihaft: Neuropathy certainly can be associated with lupus. High ANA and antiDNA confirms a lupus diagnosis (a high ANA can also be seen in other connective tissue
diseases such as rheumatoid arthritis and scleroderma). The approach to your health issues is
to first obtain an opinion with a rheumatologist to establish the diagnosis of lupus and the
degree of disease activity; then, determine the relationship of neuropathy to lupus. If your
neuropathy is attributed to Lupus, treatment is directed to Lupus with supplemental
neuralgic therapies.
Jodi: Is ion channel dysfunction a possible cause of SFN? If yes, how are ion channel
disorders diagnosed?
Lucy: I read recently about a study that showed that a large percentage of people with SFN
have a defective gene. Should we have genetic testing if no other reasons have been found
for our disease?
Dr. Marc Treihaft: You have been keeping up on the current medical literature. A study published
last year demonstrated a genetic defect, a sodium channel abnormality in sensory nerves of patients
with SFN. Approximately 50% of SFN patients may have glucose intolerance. Of the remaining
50%, approximately 1/3 may have this genetic defect. Additional studies are in progress. This is
exciting research that has potential for discovering new treatments. The genetic testing for the Na
3
1.7 ion channelopathy is fairly new. The following is a link to sites that offer this test:
http://1.usa.gov/UbC6OO.
Michael: You mentioned a study showing a genetic defect in sensory nerves of patients with
SFN. Was this study similar to the research previously done by Dr. Bonnie Dunbar of Baylor
University? I believe she found two defective genes in SFN patients.
Neuropathy Association: The 2011 study showing, for the first time, defects in the gene
for sodium channels in small fiber neuropathy, causing hyper-excitability of small pain
nerves, was published by a multinational group of medical researchers. For more information
on the genetic basis for SFN in some patients, see the Genetics Home Reference discussion
on genetic testing at: http://ghr.nlm.nih.gov/condition/small-fiber-neuropathy.
Shirley M.: Is there a way to rule out small fiber neuropathy? I have “4th of July” fireworks
in my feet after about five minutes and gets more intense the more I stay on my feet. Then,
when I sit, the fireworks continue for a time. My doctor is not sure what it is. Is there a clear
test for this type of activity?
Dr. Marc Treihaft: Initiating an evaluation with a neuromuscular specialist is critical for
your care. This includes a consultation with history and physical examination, followed by
laboratory screens, and EMG and nerve conductions studies. Depending on these results, a
small fiber biopsy (a small skin punch biopsy) provides important information for this
diagnosis. I hope this information helps.
Shirley: I do have L5 nerve root compression and I am having spinal fusion on Friday. My
doctors do not think it is related to the L5 spondylolisthesis as I had a nerve root block that
was successful for three months, but no change in symptoms in my feet. If after fusion,
there is no change, then it is likely I also have SFN or possibly
fibromyalgia.
Jodi: My neurologist suspects I have SFN based on how I describe my
symptoms, but my skin biopsy was negative, as were all the other
“My neurologist suspects I
have SFN based on how I
describe my symptoms, but
my skin biopsy was
negative, as were all the
other battery of tests I had to
determine the cause. Does a
negative skin biopsy rule out
SFN?” - Jodi
4
battery of tests I had to determine the cause. Does a negative skin biopsy rule out SFN?
Sicca: My neurologist says that the skin biopsy is a very sensitive test and it is not always
accurate. A normal test does not necessarily mean that you don't have SFN. Is this true? I
have SFN which is caused by Sjögren’s syndrome. My nerve pain is in my feet, calves, hands,
head and face, sometimes even my torso, and recently the hamstring area. I am taking 3,600
mg of gabapentin and 300 mg of venlafaxine hydrochloride extended-release. I also take
azathioprine and hydroxychloroquine for the Sjögren’s.
Dr. Marc Treihaft: A negative skin biopsy does not necessarily exclude small fiber
neuropathy. There are also other causes of numbness, tingling, and pain. I recommend
additional evaluation in these cases.
Michael: Please define a full laboratory screen for the presumptive SFN diagnosis?
Dr. Marc Treihaft: Initial screens include glucose tolerance test, liver function studies,
blood counts, sedimentation rate, ANA screens, SSA and SSB, B12, Hepatitis screens,
immunoglobulin electrophoretic patterns, ACE, HIV, and celiac studies if indicated.
Kevin: Is there anything that can be done to not run out of energy so fast? Any activity I do
makes me exhausted and tired?
Dr. Marc Treihaft: This is an excellent question. The pain of neuropathy may keep you
awake at night…this is one thing that contributes to the feeling of exhaustion. This in turn
can affect your energy, concentration, and mood. Review your sleep patterns with your
physician for other causes of sleep disturbance. Side effects of pain medications may
contribute to fatigue. The omnipresent pain also saps your energy.
Neuropathy Association: We recently published a series of articles aimed at helping our
patients better understand the link between (and cope with) anxiety, depression, sleep
disturbances, and neuropathy. To read this series, visit http://bit.ly/p9UnMl.
Ian: I had my second kidney transplant approximately twelve months ago after five years of
5
hemodialysis here in the UK. My neuropathy developed during this second period on
dialysis. I have been diagnosed with peripheral neuropathy at my neurology department. I
am currently on gabapentin. My feet are the main area affected along with my lower calves.
Are there any other medications that may help to ease the tingling/shooting
pain/sensations, etc.?
Dr. Marc Treihaft: Treatment of neuropathy in the setting of renal disease is approached
cautiously. The amount of gabapentin prescribed is lower (compared to the amount
prescribed to a person who does not have chronic kidney disease) depending on kidney
function tests. Anti-inflammatory medications may affect kidney function and are therefore
not indicated. Talk with your doctor to determine if antidepressant medications and topical
agents will help provide additional pain relief.
Beverly: Is there a causal relationship between fibromyalgia and SFN or is it a case of comorbidity if I have both?
Susan: I have idiopathic SFN and was just diagnosed with fibromyalgia. Are the two one
and the same or just closely related?
Dr. Marc Treihaft: This question comes up in my clinic frequently. While a correlation has
not been established between these disorders, many patients with
fibromyalgia complain of sensory symptoms, certainly raising this
question. A new research study was presented at the recent
American College of Rheumatology's annual meeting showing
majority of patients with fibromyalgia and neuropathic pain were
diagnosed with small fiber neuropathy based on reduced epidermal
nerve fiber. To read more about this study, visit
http://bit.ly/VTWML4.
“A new research study was
presented at the recent
American College of
Rheumatology's annual
meeting showing majority of
patients with fibromyalgia
and neuropathic pain were
diagnosed with small fiber
neuropathy based on reduced
epidermal nerve fiber.”
- Dr. Marc Treihaft
Jodi: Will a PET CT show any possible cause of SFN (excluding the obvious occult
malignancy)? For instance will a PET CT show inflammation on or around the dorsal root
ganglia? From my understanding injury or inflammation in this area could explain symptoms
of SFN.
6
Dr. Marc Treihaft: Dorsal root involvement is implicated in the more widespread small
fiber ganglionopathy. This is felt to be inflammatory in some cases and treated with immune
therapies (IVIG). Herpetic neuralgia is caused by a virus in the DRG. Imaging is not
sensitive enough in most instances for the DRG involvement. As you mentioned, imaging
may identify an occult malignancy; and in the inflammatory neuropathies—such as GuillainBarré syndrome (or GBS) and chronic inflammatory demyelinating polyneuropathy (or
CIDP)--MRI may show inflammation of nerve roots.
Janice: My husband has had severe burning of his buttocks upon sitting for twelve years. Needless
to say, it has been a real problem. After going to several neurologists who just threw up their hands,
he went to a hospital in TX where they put him on 150 mg of pregabalin twice a day and six
tramadol pills a day. His pain has really gotten worse lately and he seems to have the symptoms of
SFN, similar to what I have read on this site. He has begun to have tight leg muscles and a hard time
walking. We haven't been able to find a doctor who can help us. Do you have any
recommendations? We live between Austin and San Antonio, TX.
Neuropathy Association: If travel is an option, check out our Neuropathy Centers of
Excellence for specialists in your area. Be sure to also reach out to the support groups in the
TX area (http://bit.ly/lao0C8) for recommendations from the group leaders and patients in
your local community.
Shirle: I can recommend my doctor who practices in your area:
Alamo Pain Center, Dr. Joseph Gabriel, 12709 Toepperwein Road, #300, Live Oak, Texas
78233 (tel: 210-654-7246). Just take 35 South if you live near Austin, exit Toepperwein, turn
left, it's the first building on the right. He's a great doctor…I highly recommend him.
Neuropathy Association: Shirle, thank you for sharing this information with our
community...this helps tremendously!
Terry: I recently moved to Macon, GA. I was diagnosed with peripheral neuropathy while I
was in NC and was wondering if you know of a good doctor in Macon?
7
Dr. Marc Treihaft: I hope you enjoy Macon…I grew up there. Please visit The Neuropathy
Association’s website for its designated Neuropathy Centers of Excellence
(http://bit.ly/mzOdeo) as well as a listing of neurologists: http://bit.ly/X3CJu8.
Jodi: What is the best facility for finding the root cause for SFN? I have heard mixed
reviews for Mayo in Rochester, Johns Hopkins, and Cleveland Clinic. Some people have
good experiences; others not so much. Would you recommend one facility over another?
Carole: I have been (hate to use this term but it fits) suffering with this condition now for
over a year...it started in one foot and moved to the other. From all indications, it sounds like
SFN... I have had no real focused diagnosis on this except the general "peripheral
neuropathy"... where can I go to find a place to help me with a real diagnosis. I live in Idaho.
Neuropathy Association: We have a network of 15 Neuropathy Centers of Excellence
across the U.S...you may want to consider accessing one of them for a second opinion in
evaluating and treating your small fiber neuropathy: http://bit.ly/mzOdeo. Feel free to also
reach out to our local support groups (http://bit.ly/j2eJAT) to connect with the group
leaders and patients for local recommendations for physicians.
Liz: After five years of being told I had a mental problem, I was
finally sent to a professor at RPA in Sydney who did a punch biopsy
and autonomic tests, following which I was diagnosed me with SFN
with autonomic involvement. My symptoms started in my feet and
hands, but have progressed to include my digestion, and I now have
numbness in increasing patches all over. My main problem though,
“My symptoms started in
my feet and hands, but have
progressed to include my
digestion, and I now have
numbness in increasing
patches all over. My main
problem though, and the
one thing that I have the
most difficulty with is
hyperhydrosis all over. Are
there any treatments for this
symptom?” - Liz
and the one thing that I have the most difficulty with is hyperhydrosis all over. I sweat
profusely from everywhere, even in the middle of winter. I'm constantly wet and it's getting
harder and harder to handle. Are there any treatments for this symptom?
Janet: Is there anything that can be done for heat intolerance?
Neuropathy Association: Read this “Ask the Doctor” feature addressing excessive
sweating associated with autonomic neuropathy written by Dr. Jasvinder Chawla http://bit.ly/vb2t2l.
8
Liz: Thank you, I'll certainly check that out! Of all the symptoms this is the one id get a
genie to take away if I could. It's debilitating, especially living here in Australia in summer. I
no longer leave the house during the day.
Brenda: Can't some of those symptoms also be a result of the medications?
Dr. Marc Treihaft: Yes, some of these symptoms can be a side-effect of medications as
well. That is why it is important to share new symptoms—any symptoms you feel are new,
resulting possibly from starting new medication, etc.—with your doctor so he/she can
determine if it results from the medication, or from neuropathy, or from something else
going on in the body.
Janice: My husband wakes at night dripping wet with sweats. Anyone else?
Bill: The pain has been in my feet for six years since I suffered a heart attack. Will other
areas be affected later, such as the cardiovascular system, digestive tract, and bladder?
Michael: You mention that SFN affects “the skin, cardiovascular system, digestive tract, and
bladder, among others.” Can you expand upon what other organs are affected and how so?
Dr. Marc Treihaft: To address several questions related to what areas of the body SFN
affects, it is important to understand what small nerve fibers are and which parts of the body
they send messages to (small nerve fibers transmit messages to the skin, the cardiovascular
system, digestive tract, and bladder). Small fiber neuropathy refers to disorders of the
peripheral nerves that primarily affect the small unmyelinated nerve fibers, autonomic fibers,
or both, resulting in sensory changes and autonomic dysfunction when both types are
involved. The symptoms vary depending on the degree and type of nerves affected; they
usually develop gradually over time:
- When the digestive system is affected, symptoms include constipation, diarrhea,
feeling full with only a few bites after eating, and vomiting of undigested food.
9
- When the heart and lungs are affected, symptoms may include blood pressure
changes with position causing dizziness when standing and shortness of breath with
activity and/or exercise.
- When the urinary tract is affected, symptoms may include difficulty beginning to
urinate, feeling of incomplete bladder emptying, and urinary incontinence.
- Other symptoms include sexual dysfunction, abnormal sweating, heat intolerance
brought on by activity and exercise, and thinning of the skin (with susceptibility to
bruising and poor healing).
Karen: Are muscle cramps in the calf region a symptom of small
fiber polyneuropathy?
“Are muscle cramps in the calf
region a symptom of small fiber
polyneuropathy?” - Karen
Neuropathy Association: There are many causes for muscle cramps (e.g., overuse of a
muscle, dehydration, nerve and muscle disorders, too little potassium, calcium, or
magnesium in your diet…). It is important to check in with your doctor to determine what’s
causing the muscle cramps and treat them accordingly. In some instances a cause for the
cramps will not be identified. Equally frustrating is the lack of a good treatment.
Erin: I have autonomic neuropathy, and bowel dysfunction is a problem for me as well as
the light-headedness from the heart rate/low blood pressure. Is there something that can
help with that?
Dr. Marc Treihaft: There are therapies for these symptoms you
describe, Erin. I suggest speaking with a gastroenterologist for
managing bowel motility issues using medications and dietary
modification. The light-headedness can be managed with
“I have autonomic neuropathy,
and bowel dysfunction is a
problem for me as well as the
light-headedness from the
heart rate/low blood pressure.
Is there something that can
help with that?” - Erin
with that? - Karen
adjustment of salt intake and special steroids and pressor medications under the care of your
neurologist / cardiologist.
Liz: Thanks for this! I've only recently found out that my bowel problems were a symptom
of my SFN…I always assumed it was the meds. I'm on gabapentin and strong painkillers as
well as various other medications. My disease is progressing rather quickly at the moment
10
and I am wondering if this is making me feel exhausted all the time or it's the other way
around.
David: My SFN and autonomic neuropathy arrived along with two sleep disorders: periodic
limb movement disorder (PLMD) and hypopnea (or shallow breathing). If you have been
diagnosed with SFN and/or autonomic neuropathy, I suggest getting a sleep study. While
everyone is different, narcotic medication helped me sleep better. This doesn't cure SFN or
autonomic neuropathy, but it eliminated some of my symptoms and the need for several
other meds that I was on.
Mary Kay: My husband has SFN and has been on tramadol. His neurologist has just taken
him off the tramadol and started him on tapentadol extended release.
Charlotte: I have hereditary sensory neuropathy for the last 13 years. My doctor suggested a
spinal stimulator and pain pump because I am in constant pain. I was curious if this has
been successful for others. Are people able to work after having this treatment
procedure?
Dr. Marc Treihaft: This is a difficult question. Many patients’ "at
the end of their ropes" pain is intolerable and nothing seems to
work. Spinal stimulators purportedly provide pain relief as a last
resort. This has been reviewed with mixed results for many pain
syndromes.
“I have hereditary sensory
neuropathy for the last 13
years. My doctor suggested a
spinal stimulator and pain
pump because I am in
constant pain. I was curious if
this has been successful for
others. Are people able to
work after having this
treatment procedure?”
- Charlotte
Shirle: I had the neurostimulator implant done. My experience
was not good. I tried it a year ago and my doctor is suggesting I try it again, but in a different
location. I'm willing to try it again. Try the trial period. It may help for you.
Jackie: I have hereditary SFN and had a spinal cord stimulator implanted a year ago. I have
to say, I am a little disappointed in the results. I receive about 20% relief and take narcotics
too.
Patti: I know several people who have neurostimulators and love them; they wouldn't be
able to do half the things they do without them! I also know a few people for whom the
11
neurostimulator didn't work. I think it really depends on the type of pain you have and how
well the leads are placed; also, if you are very careful post-surgery to ensure that they do not
move before they can stabilize. I think the most frustrating part is just having to keep trying
different treatments to find the one that works best for you after others have failed. But you
do have to keep trying because everyone responds so differently to each treatment. Good
luck!
Connie: I have had one for three-and-a-half years. It is a process of learning how to adjust it
and seeing the reps from the company that make your stimulator. I wouldn't want to be
without mine, but I waited too long to see the representative this time. Now, I can see my
mistake. It is working much better at controlling my pain. I believe that I was told that it will
take care of about 60% of the pain. This may be on the high side, but it is difficult to know
how much it does.
Donna: I have peripheral polyneuropathy; I was diagnosed in 2006. I had a spinal cord
stimulator implanted…very grateful for this device. Now, my disease is spreading and I hope
to find treatment for my spreading pains…neuropathy is so cruel.
Lisa: I am the rare patient that had a successful trial with the stimulator and an unsuccessful
surgery. This happens in about one in a thousand. I got a pain pump in August. It's helping,
but I'm still using oral meds too.
Neuropathy Association: Take a look at our transcript from our “Neuropathic Pain”
Facebook chat hosted by Dr. Corey Hunter for additional insights on pain treatment
options: http://bit.ly/LR30rI.
Marla: I'm newly diagnosed. I also have CRPS (complex regional pain syndrome) and
Sjögren’s. How do you feel about the use of opioids for excessive pain? I also take high
doses of pregabalin and milnacipran.
Dr. Marc Treihaft: I am sure that many patients with severe pain from small fiber
neuropathy and other painful syndromes such as CRPS are interested in your question.
Opioid medication, under close observation, may be used for severe pain symptoms in
12
conjunction with anti-depressants and anti-convulsants. Attention to dosing and side effects
is critical.
Bernadette: How common is SFN and erythromelalgia? Is the burning just a symptom of
the SFN?
Dr. Marc Treihaft: An excellent question! Erythromelalgia is a form of SFN. By definition,
erythromelalgia is a condition characterized by episodes of pain, redness, and swelling in
various parts of the body, particularly the hands and feet. Treatments are similar for the pain;
a cool environment and NSAIDS may also be used for erythromelalgia.
Dr. Marc Treihaft: To address several questions posed about SFN being progressive: This
is a concerning question. The pain may progress for several years then stabilize. Symptoms
may involve the hands and feet in a ‘stocking glove’ distribution. In some instances the pain
may actually improve, but numbness persists. Unless the larger fibers become involved,
weakness and imbalance are not associated with SFN. Ambulation is only affected by the
pain.
Laura: I have SFN. Sometimes my right hand and forearm, the one that feels like it has a
glove on, gets cold as ice. I had a vascular work-up that showed the blood flow is good.
Could the temperature change be related to SFN? Also, both hands and arms ache to the
bone sometimes for no reason…makes me want to cry.
Lora: So far my SFN is considered idiopathic by my neurologist. I do, however, have low
IgG levels. Could this indicate anything?
Marc Treihaft: I would direct that question to a hematologist-oncologist. The specific level
and additional clinical information are important.
Fiona: I have SFN. I have been taken off pregabalin due to fluid
retention/ weight gain and changed to gabapentin, but I am
continually knocking things over like cups of tea, dropping things
and losing my balance. Would this be due to the neuropathy itself or
the meds?
“I have SFN. I have been
taken off pregabalin due to
fluid retention/ weight gain
and changed to gabapentin,
but I am continually knocking
things over like cups of tea,
dropping things and losing
my balance. Would this be
due to the neuropathy itself or
the meds?” - Fiona
13
”
Charlotte: Fiona, I get cups with lids, I watch with my eyes when I put anything down
otherwise I spill, drop, trip...I feel it is the neuropathy; we lose our sense of touch. My
neuropathy is in my hands, wrist, feet, legs, up to my knees. Also, balance is a problem
…we have to use our eye sight to compensate for the loss of senses, in my opinion.
Marian: Do you know if this Association has a division in Canada?
Neuropathy Association: Marian, we have support groups we work with in Canada,
though we could use a few more support group leaders up there to help us reach all the
people who are suffering...here's a list of the ones we work with: http://bit.ly/odkhQ7.
Jacqueline: I am 47-years-old with diabetes and painful neuropathy. I used to walk with a
walking stick, hobble to the toilet…now, I walk much better from using a light therapy,
LED warmer, that I bought with a pad from Amazon.
Patricia: I take no meds, drop things a lot and have horrible balance. Meds don't work, so I
don't take. No need for side effects. As for pain, it is there and will always be there for me. I
accept what I cannot change.
Jodi: What are your thoughts on immunoglobulin (IVIG) to treat SFN?
Dr. Marc Treihaft: Treatments, like IVIG, are most effective when directed at an identified
cause. E.g., Sjögren’s syndrome, or acute and post-infectious ganglionic forms of small fiber
sensory, chronic inflammatory demyelinating polyneuropathy (or CIDP), and multifocal
motor neuropathy (MMN). There are reports of response to IVIG in the idiopathic group,
but the evidence is inconclusive.
Dan: Pain seems to be the main issue involved with this disease and similar peripheral
neuropathies. Other than simply identifying the underlying disease do you have any insight
on any treatments coming down the research road concerning dealing with the horrible pain?
Neuropathy Association: Neuropathic pain is a common symptom for many patients with
neuropathy. The good news is that there are several pain management treatment options to
14
consider. Identifying the underlying cause of neuropathy is critical because it allows the
doctor and patient to not just manage the pain of neuropathy, but also manage the
underlying disease and thereby minimize the neuropathy. E.g., People with diabetes who
have diabetic neuropathy can manage their neuropathy in several ways: pain management
therapies specifically for diabetic neuropathy, but also with lifestyle changes that help
normalize the blood sugar levels (which is what ultimately causes the nerve damage in
diabetic neuropathy). WE are hopeful about the clinical trials currently in progress/recruiting
volunteers to bring the next wave of therapies to our broader community. To learn more
about neuropathy clinical trials, visit www.clinicaltrials.gov.
Theresa: Should everyone with SFN have special glucose tests or is the fasting overnight
sufficient?
Neuropathy Association: Diabetes is one of many risk factors for SFN and neuropathy in
general. Diabetic neuropathy and pre-diabetes is the most common identified cause of
neuropathy. The estimates are that 50-70% of people with diabetes will develop neuropathy.
And, many patients develop neuropathy much before they get diagnosed with diabetes
because the biochemical changes that cause diabetes probably go on for years before the
blood sugars reach that level. For some people, during that time, it may be enough to
damage their nerves. A 2-hour glucose tolerance test is a much more sensitive measure of
pre-diabetes and should be performed on anyone with an otherwise idiopathic neuropathy.
Sicca: My neurologist said that gabapentin is pretty much the same as pregabalin. I am on
3,600 mg of gabapentin. Would switching to pregabalin be better as I do not think there is a
higher dose of gabapentin as I believe I am on the maximum dose?
Dr. Marc Treihaft: Some patients respond to one (or a combination of) medication(s)
better than others, even though they are similar in action. Have you tried adding an antidepressant or topical agent?
Elena: I have often experience electric shock like pain. They occur sporadically all over my
body. It lasts a short time. But last week, it lasted for about 30 minutes in the same area. Is
this also a symptom of SFN?
15
Dianne: I have neuropathy, and every night I have severe burning on my back…it feels like
it is on fire. I can’t have clothes or covers touching it as it makes it more painful. Is that part
of SFN?
Dr. Marc Treihaft: This question brings up an important point about SFN. SFN does not
just involve the hands and feet. Some patients experience widespread involvement indicative
of a variant of SFN frequently overlooked (and unfortunately misdiagnosed as a psychiatric
problem). The SFN biopsy is useful for this form of SFN or "ganglionopathy."
Michael: What topical agents would you recommend for SFN pain?
Dr. Marc Treihaft: Capsaicin and lidocaine patches/ointment are two examples of topical
agents. Be sure to read through the transcript from The Neuropathy Association’s
“Neuropathic Pain” Facebook Chat with Dr. Corey Hunter for additional information about
topical agents and compounding therapies that help provide pain relief:
http://bit.ly/O38Hmq.
Modgling: I have Diabetes and peripheral neuropathy. Bad in feet and legs. I also have
found out I have a paralyzed diaphragm. Can this be caused by the neuropathy? It is the
only thing I can think of that would have caused it?
Dr. Marc Treihaft: The diaphragm paralysis may be related in the form of a phrenic
mononeuropathy. Pulmonary and neurology evaluations are important.
Gary: I have polyneuropathy. I will soon be having back surgery. I have a large extrusion at
L4-L5. It mainly involves the sciatic nerve. Will back surgery have any affect on the
neuropathy?
Dr. Marc Treihaft: It is not too unusual to have two problems affecting your legs and feet.
The neuropathy itself will be unaffected by the surgery, but the surgery may alleviate back
and leg pain and some of the sensory symptoms in your feet.
Gary: Thank you! The surgery is laminectomy and fusion.
16
Tina Ann: Is neuropathy genetic and can i pass it to my children? I have idiopathic
peripheral neuropathy and I fear my son is starting to show signs of this now and he is only
six-years-old. Thank you!
Dr. Marc Treihaft: There are some forms of neuropathy that are genetic. A percentage of
idiopathic neuropathies are also felt to be genetic. Please bring your son’s symptoms to the
attention of the neuropathy specialist. Please do not assume he has neuropathy, as there may
be other causes of his symptoms that need to be evaluated.
Neuropathy Association: Dr. Treihaft, thank you for giving your time and expertise to speak with
our community and raise awareness of small fiber neuropathy and neuropathy/neuropathic pain in
general!
Dr. Marc Treihaft: Thank you for joining us this evening for this important chat. I wish I
could answer all the questions…hopefully, we have offered some insight!
Neuropathy Association: A transcript of this Facebook chat will be published in the coming weeks
on www.neuropathy.org. Thank you again for participating in this event and for helping raise the
public profile, and understanding, of neuropathy! To learn more about the efforts of The
Neuropathy Association to bring help, hope, and healing to the neuropathy community, visit
www.neuropathy.org.
Neuropathy Association: To receive a copy of the transcript, as well as upcoming neuropathy
events and programs offered by The Neuropathy Association, be sure to sign up for our email
notices here - http://bit.ly/kVs4qZ.
Neuropathy Association: Our mission is to bring help, hope, and healing to the neuropathy
community. To do this, The Neuropathy Association offers programs that: increase awareness of
neuropathy’s scope and impact; promote and expand cutting-edge scientific research; provide
patient and physician education and advocacy to improve neuropathy care; and organize national
and local patient support programs. As a nonprofit 501(c)3 charitable organization, we rely on
donations from individuals in the neuropathy community to continue our mission-focused initiatives
17
that millions impacted by a neuropathy diagnosis rely on. We receive no government funding and
limited corporate support. To learn more and support our mission, visit www.neuropathy.org.
Disclosure: The information provided in this transcript is intended for use as general health and wellness
information. It is not intended to replace the personal medical advice of your health care provider. Please discuss all
treatment, lifestyle, and diet choices with your health care provider.
©2012 The Neuropathy Association. All rights reserved. All material in this e-newsletter is property of The
Neuropathy Association and isprotected by copyright law. Reproduction of content requires express permission from
The Neuropathy Association.
18