Wartenberg's Migrant Sensory Neuritis
 Experiences 

Wikipedia now has a entry on this topic: View it here.

This page contains personal descriptions of experiences with this neuropathy - collected from September 2003 - November 2007.

Introduction

Wartenberg's Migrant Sensory Neuritis is a rare, benign - but initially worrying - relapsing/remitting neurological condition about which little can be found on the internet. It can take years for doctors to arrive at this diagnosis. This web page is a place for people diagnosed with this condition to describe their experience so that others with similar symptoms can learn more about what this condition involves.

Experiences

Mark Johnson
C Shake
Mike Orndorff
Allison Oosterman
Ken Biggins
Pat Gibson
Shelby
Christa Lunsford
Anastasia Ioannou
Wes Graham
Claudia
Lorraine
lloyd rucker
sasha
Cait
lloyd rucker
Dee
Laurie Contrera
Lorraine
Lynn Tyler
Wendy Wibberding
Jocylyn Carlisle
Jennifer
Tammy
Patricia Barker
L.M.H.M.
Rod Leonard
mike
janet
Kris
Mark Thomson
Jennifer
Wendy
Adèle
M. Michels
Linda
Rich
Margaret Sullivan
Sara Davis
Kristin
Jodie Wallis

Name: Mark Johnson
Location: Virginia, USA

Age: 36

When Symptoms Started: February 2001

When Diagnosed: July 2002

Symptoms:
Began with sudden onset of strong tingling sensation in lower legs and hands. Location of sensation occurred in different locations from day to day. The tingling gave way to numbness upon my second major flare-up along with more fatigue in my legs. Burning sensation in the palms of my hands. During a major flare-up, I generally feel several leg nerves or muscles quivering for 20-30 minutes upon lying down in bed. The initial diagnosis was benign paresthesias (numbness and tingling). I did not get diagnosed with Wartenberg's until over a year and two neurologists later.
Frequency of Symptoms:
Major flare-ups have occurred every 10 or 11 months. Minor flare-ups every 2-3 months.
Tests Conducted:
Numerous blood tests, 3 EMGs, 2 MRIs. The first EMG returned abnormal results, but my primary neurologist dismissed that as faulty interpretation by the neurologist who conducted the test. All other tests were normal.
Prescribed Treatment:
I take 300 mg of Neurontin nightly, though I have taken up to 1200 mg/day during major flare-ups. Causes major drowsiness for me. I was told to exercise regularly to help combat the symptoms.
Comments:
The impact has not been extremely significant, but it is most certainly annoying. As a computer professional, numbness in the hands can make typing uncomfortable. Before I was diagnosed, I was concerned that my symptoms seemed similar to early signs of Multiple Schlerosis. I also wondered if ergonomics were involved, but it seemed unlikely. While it is unfortunate to have this, there are far worse things.
What I know about Wartenberg's Neuritis:
The average onset is age 35, and the symptoms can last from a few years to several decades. Some experience a shooting pain upon stretching limbs. Cause is unknown. I was told that many doctors are unaware of this condition because of its rarity.
(Submitted on September 19, 2003)

Name: C Shake
Location: Minnesota

Age: 60

When Symptoms Started: July. 2003

When Diagnosed: December 16, 2003

Symptoms:
hypersensitive areas-starting with 2 areas size of half dollar on right side, then moving down to behind knee. Subsided. Then on left side, moving halfway to knee, then up to left arm pit with pain in muscle. Subsided. Pain behind left ear with sensitivity on 1/4 of scalp. Subsided.
Frequency of Symptoms:
No break from July to December. No symptoms now.
Tests Conducted:
MRI, EMG. Blood work
Prescribed Treatment:
None
Comments:
What can I expect?
(Submitted on December 29, 2003)

Name: Mike Orndorff
Location: Virginia

Age: 39

When Symptoms Started: 36 yrs old approximately

Symptoms:
Electrical Shooting pain from hip to knees, burning pain lower left leg, pain in mid to lower spine. Vanishes for months then returns with twices the amount of pain.
Frequency of Symptoms:
First onset constant for months then vanished. Second onset 6 months
Tests Conducted:
2 Full MRI's, 1 Open MRI, 3 EMG's, Blood test, CAT Scan, Skeletal Xrays
Prescribed Treatment:
Oral Steroids, epidural steroids, neruve blocks, 3000mg Neurontin, 100mg Zoloft, 200mg Noratripline, Numerous Narcotics
Comments:
Symptoms run parallel to MS, Steroids were quite helpful in the beginning, Seems no promising outlook for research in this arena and very little documentation. First Neuro doc's first jumped at MS then dismissed all since MRI's showed nothing. Currently see doctors at UVA.
What I know about Wartenberg's Neuritis:
HIPPA is a great drawback since info is not shared even with patients consent. John Hopkins holds lectures on the disorder but after transferring my records they would not examine, no idea why. Patients MUST persist and pressure medical professionals to get anything.
(Submitted on February 15, 2004)

Name: Allison Oosterman
Location: New Zealand

Age: 56

When Symptoms Started: 2003

When Diagnosed: 2004

Symptoms:
First symptoms that prompted me to see a doctor were burning and tearing pain in my right foot on stretching. Then the area went numb. This was followed by a similar process with part of the left knee, the other foot and down one side of my left little finger! After about three months of nothing, I have the tearing feeling on my right knee.
Frequency of Symptoms:
This has happened gradually over the last six months.
Tests Conducted:
Blood tests which showed nothing. As there were no other areas of concern it was considered benign. My neurologist described the symptoms to another colleague who recognised this as WMSN.
Prescribed Treatment:
Nothing. Watch for further symptoms and keep in touch with neurologist.
Comments:
I have a degrading thyroid. I have been wondering if there is any connection. Anyone else suffering from hypothyroidism? Otherwise I am in excellent health.
What I know about Wartenberg's Neuritis:
I only know that apparently these are the classical symptoms - ie the pain on stretching and then numbness. Likewise the initial thought was it might be MS.
(Submitted on March 5, 2004)

Name: Ken Biggins
Location: Indiana

Age: 53

When Symptoms Started: 2001

When Diagnosed: March 2003

Symptoms:
Pain in lower back. Bilaterial leg pain most of the time. The pain is mainly in calf and feet area. Have had surgery on both arms to transpose the ulnar nerve at the elbow.

As the condition's name implies, other areas hurt then get better.
Frequency of Symptoms:
Legs hurt most of the time. Arms and hands seems to be losing feeling but function okay. Lower back hurts all the time.
Tests Conducted:
MRI on lower back 3 times, MRI on brain, cervical and thoraic once. Blood work twice. Epidural steriod injections 5 times, EMG twice. Specific nerve injection at L4-L5. Facet injections once. Discogram. Myelogram.

I have seen 10 specialists until one figured out the problem!
Prescribed Treatment:
Periactin 4mg x 4, Neurotin 300mg x 3 and Lexapro 10 mg. Various pain medicines.
Comments:
I am being treated at the University of Chicago. . While there is no cure, the pain I was experiencing has reduced to a livable level.
What I know about Wartenberg's Neuritis:
My doctor, Dr. Barry Arnason, is a researcher in MS. I am not a biologist but from what I understand, the source of the problem appears to be mast cells produce histamines in an out of control fashion. When this happens, the base nerve cells react like an asthma attack which causes the pain.
(Submitted on March 21, 2004)

Name: Pat Gibson
Location: Pennsylvania

Age: 42

When Symptoms Started: 1987

When Diagnosed: 2004

Symptoms:
Bilateral hypersensitivity of the skin in all areas of the body excluding the face and neck areas - never any visible signs/rashes on the skin - it is probably the most painful when it hits the perianal/genital areas. The pain is comparable to placing a hot iron on the skin or a bad patch of sunburn - the hypersensitivity can be the size of a dime or the size of a softball and is sensitive to any type of touch or physical movement. It travels very quickly thru the body and I never know where or when it is going to hit next. Exercise does not exacerbate the symptoms by any means. At times there can be tingling sensations and numbness but this is more the exception than the rule.
Frequency of Symptoms:
Sometimes on a daily basis up to 3 days at a time. It is rare to be symptom free for more than 4 days at a time.
Tests Conducted:
Neurological exam, series of blood tests, EMG and NCS
Prescribed Treatment:
Neurontin 300mg caps.
1 cap. po od x 2 weeks, then increase to 1 cap. po bid, then 1 cap. po tid. To continue taking Famvir 500mg tabs. 1tab. po prn but plan is to titrate down as I increase the Neurontin over the next several weeks)
Comments:
Prior to recent diagnosis and treatment I was prescribed Famvir 500mg tabs. 1 tab. po qid for 6 years (maintenance therapy)- prior to starting on the Famvir I had been taking Zovirax 800mg tabs. 1tab. po tid for 10 years.
What I know about Wartenberg's Neuritis:
Symptoms were ackowledged as being real and not simply psychological. The symptoms could be diagnosed thru proper medical/neurological procedures and tests. It is unclear at this time if what I have is acquired or hereditary.
(Submitted on May 21, 2004)

Name: Shelby
Location: Wylde

Age: 37

When Symptoms Started: 2001

When Diagnosed: 2001

Symptoms:
Shooting pain in left fingers after my son pulled and stretched them medially. Numbness on the medial dorsal aspects of both hands and dorsal of both feet.
Frequency of Symptoms:
Numbness on right hand and feet have resolved as have the shooting pains. Numbness still present on left hand.
Tests Conducted:
Nerve conduction studies, MRI of brain
Prescribed Treatment:
None
Comments:
Being a specialist in the dental field, as soon as I had symptoms I saw a hand-wrist specialist. When he was no help, I saw a neurologist who was equally puzzled. I went from there to UCSF medical center where I was quickly diagnosed.
What I know about Wartenberg's Neuritis:
No effective treatment or cure exists.
(Submitted on June 11, 2004)

Name: Christa Lunsford
Location: Indiana

Age: 73

When Symptoms Started: feb. 2003

When Diagnosed: not yet

Symptoms:
intense pain in lt knee then inner and outer thigh,down inner and outer leg. After 6 ms the same in right leg, later in lt and then in rt arm. Pain is always but bearable. Tingling, needle pricks, sometimes like electric shocks.
Frequency of Symptoms:
pain never goes away but not so acute anymore.
Tests Conducted:
MRI of spine and hips. Bone Scan, knee x-rays, blood work.
Prescribed Treatment:
none
Comments:
I read about Wartenberg syndrome on a web site from Germany. It described my symptoms to a T.
What I know about Wartenberg's Neuritis:
Only through research on my pc.
(Submitted on June 17, 2004)

Name: Anastasia Ioannou
Location: Cyprus

Age: 56

When Symptoms Started: October 2003

When Diagnosed: July 2004

Symptoms:
Hot burning feeling on my feet
Prescribed Treatment:
Neurontin 300mg
(Submitted on July 26, 2004)

Name: Wes Graham
Location: Chester, England., UK

Age: 46

When Symptoms Started: 1997

When Diagnosed: 1999

Symptoms:
Numbness in hand/foot/knee. Usually stays in one location for weeks/months and then goes away for a while before starting off on another limb.It's usually around my thumbs, big toe and occasionally knee. Agonising electric shock feeling when I stretch the limb.
Frequency of Symptoms:
Usually active in one location for most of the year. I've had a lot of lower back pain for months now. I notice several sufferers have referred to lower back pain on other sites. I'm sure this is significant in some way with the root cause of the problem. My difficulties started some years ago when I hurt my back lifting a heavy load.
Tests Conducted:
Saw a couple of neurologists who diagnosed Wartenberg's Neuritis. The last consultant neurologist I saw got very excited that it was his first case of Wartenberg. Bully for him - but, to my dismay, he offered no treatment.
Prescribed Treatment:
none
Comments:
It's very frustrating the way it moves from arm to arm and leg to leg. You think it's gone away and then returns a week or two later on a different limb. It's also very debilitating. The electric shock effect is awful.
What I know about Wartenberg's Neuritis:
Nothing of value.
(Submitted on August 18, 2004)

Name: Claudia
Location: Holland

Age: 37

When Symptoms Started: 1998

When Diagnosed: 2004

Symptoms:
Numb spots on face and arms, never a long time in one place, moving. Around mouth, forehead, cheeks, arms and fingers.
Frequency of Symptoms:
Daily, I guess. But not the whole day.
Tests Conducted:
None. The family doctor told me it was impossible to have such symptoms. I went to see him as soon as I experienced the numbnesses. Five years later (2003) I was diagnosed with a brain tumor. I asked my neurologist about de moving numb spots and she immediately came up with Wartenberg's Neuritis.
Prescribed Treatment:
None.
Comments:
I am used to it now. It does not bother me too much. When smoking my first sigarette of a day it often comes up. When I take some extra rest, it decreases.
What I know about Wartenberg's Neuritis:
My neurologist told me it's an innocent affection. No cure for it.
(Submitted on September 11, 2004)

Name: Lorraine
Location: Ottawa, Canada

Age: 58

When Symptoms Started: August, 2002

When Diagnosed: October, 2004

Symptoms:
Permanent numbness in right leg, left knee and left hand
Frequency of Symptoms:
extreme burning itch between shoulder blades
Tests Conducted:
pain in forearms and elbows especially when bending elbows after having arms outstretched for even a short period of time. Periodic extreme skin hypersensitivity as well as periodic shooting electrical shocks in right leg. Numbness in left hand has resulted in loss of strength in baby finger which proves to be quite inconvenient when typing at work. Although my condition is manageable, it does prove to be somewhat uncomfortable and annoying. In addition to this condition, I was diagnosed in June, 2004 with Genetic Hemochromatosis.
Prescribed Treatment:
Two EMG's, one MRI, blood work and DNA testing
Comments:
To date, my symptoms have remained permanent
What I know about Wartenberg's Neuritis:
After reading other's comments on this condition, I felt a bit relieved to know that my symptoms were real after all. I definitely thought the Neurologist might think I was fabricating some of them, especially when some symptoms are here today and gone next month, in some cases. However it's always good to know that things could indeed be much worse. I still count my blessings! Good luck to everyone out there with the same condition.
(Submitted on October 16, 2004)

Name: lloyd rucker
Location: newport richey, fl 34652

Age: 54

When Symptoms Started: mid 2003

When Diagnosed: oct, 2004

Symptoms:
tingling, pain in thumb, feet/starting at toe, back of hand,
Frequency of Symptoms:
almost continueious, progressive getting worse.
Tests Conducted:
everything in the world. shans? in gainesville fl. dr. triggs diagnosed as wartenberg MSN.he had just learned of this a year or so ago.
Prescribed Treatment:
none for sure? but wants to iv some blood product which affect the amune system.?
Comments:
write about wartenberg information. can't find anything!! my wife has the trouble- daryla age 54
What I know about Wartenberg's Neuritis:
see above. have talked with others that have the same problems and dr. S don't know why. dr. grant sent us to gainesville to dr. triggs, who was very inpressive. HELP!!!!!!
(Submitted on October 29, 2004)

Name: sasha
Location: vienna va

Age: 29

When Symptoms Started: +2yrs ago?

When Diagnosed: diagnosed w/b-12 anemia

Symptoms:
shooting pain. (decriptions of needles or electrical shocks are good) moves from leg to leg and arms. loose grip in hands extremities become numb or fall asleep very quickly when inactive.
Frequency of Symptoms:
was daily before i got b-12 injections. reduced considerably for 1-2 months, but have returned.
Tests Conducted:
electro-stimulas, blood work
Prescribed Treatment:
b-12 shots
Comments:
looking over this website my symptoms seem very similar to W's. Does anyone know if there is a connection or had similar experiences. My symptoms were supposed to go away with the b-12 but they seem to be back. also have been told that b-12 is supposed to make you very energetic but it makes me feel terrible, where i have to sleep for a day after i get the shot. is anyone on a treatment that seems to be working?
(Submitted on December 9, 2004)

Name: Cait
Location: Irvine, CA

Age: 31

When Symptoms Started: Oct 3, 2004

When Diagnosed: No diagnosis

Symptoms:
Started with burning sensation on the inner right side of left knee. Then went on calf and then both left arm and leg began tingling and numbness. I have many symptoms that all of you described.
Frequency of Symptoms:
Still ongoing. Very bad nerve pain/inflammation affecting from head to toe.
Tests Conducted:
Blood work
Prescribed Treatment:
I noticed that not many did the spinal tap test. This test was crucial for me in that my oligloconal bands were highly abnormal. This is highly suggestive of MS although my other tests (blood, MRIs, NCT) appeared normal or not-significant. I suggest that if you really want to rule out MS, to do a spinal tap, as a few percentage of MS sufferers have perfectly nomral MRIs.
Comments:
MRI of brain, cervical, spinal - Nerve conduction test - Spinal tap
(Submitted on January 4, 2005)

Name: lloyd rucker
Location: newport richey ,fl

Age: 54

When Symptoms Started: 2002

When Diagnosed: 2003

Symptoms:
see previous entry- things are not getting better for daryla
Frequency of Symptoms:
she is in the process of ivig treatment but after 3 ivig's, things continue to get worse
Tests Conducted:
everything except the spinal ?????
Prescribed Treatment:
ivig along with the nurotine and alot of pain pills
Comments:
help !!!!!!!!!!
What I know about Wartenberg's Neuritis:
scheduled to go back to shan's in gainesville in march after the ivig's are complete- ivig consist of 10 sessions over a period- 1 per week for 3 weeks, then decreasing there after until the 10 session are complete. lloyd rucker( husband )
(Submitted on January 23, 2005)

Name: Dee
Location: Australia

Age: Early thirties

When Symptoms Started: Mid - 2004

When Diagnosed: March 2005

Symptoms:
Feet, hands 'go to sleep' more easily than in the past. Numbness and tingling in lips, tongue and the other parts of my face, as well as occasionally fingers and toes. Once even in forearms. No stabbing pain, only discomfort.
Frequency of Symptoms:
Comes and goes - I think that's the best I can do! Lasts for hours or days in my lips. Disconcerting more than anything.
Tests Conducted:
MRIs
Prescribed Treatment:
No treatment.
Comments:
Holland's description is most similar to mine.
(Submitted on March 22, 2005)

Name: Laurie Contrera
Location: chestrfield. mo

Age: 46

When Symptoms Started: 8-2003

When Diagnosed: 3-2005

Symptoms:
Pain strted after diagnosed with spina stenosis in neck training for marathon had epideral shots in neck got thru ok had dizziness face feltlike it was burning all the time, then year later my throat was burning and felt very shaky was having pins and needlesensations all over my body face lips stomach legs arms then wetn to all this burning sensations from my brain to my feet. I t really freaks me out when the throat burns, it now feels like my heat burns sometimes. It is enough to make you feel like you are going crazy because all blood tests have been coming bak normal. I have seen 2 neuroligist 1 says i have a neurophathy the other says noaand says i have this wardenburgssensory neuritis. I am on 3 types of medicines so far with norelief.it makes you wonder they are keppra topamax, and cymbalta, iwas on neurontin but they made me have shaky body movemens.I am in constant pain I KEEP THINKING IT IS COMING FROM my neck but they say no.This i the most painful thing i have ever experinced in my life
Frequency of Symptoms:
constant
Tests Conducted:
mylogram mri, emg nerve conduction,mri lumbar and spinal and brain,tests performed by a rheumatologists
Prescribed Treatment:
topamax cymblta, keppra
Comments:
Sure wish they find a cure,or something that will ease the symptoms at leat
(Submitted on March 30, 2005)

Name: Lorraine
Location: Ottawa, Canada

Age: 58

Symptoms:
Update: Both forearms are now in constant pain. My left hand reacts with extreme pain if lightly touched. Unable to tolerate the touch of a coat sleeve. Is anyone taking medication for this?
(Submitted on March 30, 2005)

Name: Lynn Tyler
Location: New Zealand

Age: 56

When Symptoms Started: 2000

When Diagnosed: 2003

Symptoms:
tearing pain initially, and after on touch only, sensitivity pain on surface to touch , numbness from 3cm patches to 20cm patches which fade to small patches that never go away. Numbness centred around initial pain point in some. Isolated pins and needles
Frequency of Symptoms:
A pattern is emerging of something 'new' every 6 mths, which begins with pain acute at the start then fades to pain on touch only and then no pain for hands only Pins and needles most weeks very lightly Pain if kneeling (first parts to 'go') Began with one knee then the other. Then top of big toe knuckle then the other foot same Then under a toe but not the other Then on top of a hand between index and middle finger, then the other hand the same. Now back of right leg/hip (early days to say if this last one is WMSN or not
Tests Conducted:
Didnt ask. Nerve tests with the wires and also the needle ones that are painful. Blood tests
Prescribed Treatment:
None initially, then amitriptaline for nightime to sleep. I stopped this as it made me cranky.
Comments:
Want to know if anyone has found natural things to releive pain. ie Hot or cold baths, walking, minimum 8 glasses of water, bedrest.. Anything helped you that I could try?
What I know about Wartenberg's Neuritis:
Its a pain! Mostly it has not affected my lifestyle. But yesterday another patch has started that is under a leg ie sitting down, walking, lying down all cause pain
(Submitted on September 22, 2005)

Name: Wendy Wibberding
Location: Kansas

Age: 40

When Symptoms Started: mid 2005

When Diagnosed: December 2005

Symptoms:
burning in legs and feet, numbness in legs and feet
Frequency of Symptoms:
continuos
Tests Conducted:
mri of leg, back, head
Prescribed Treatment:
gabapentin
Comments:
help I do not have any information
What I know about Wartenberg's Neuritis:
none
(Submitted on December 28, 2005)

Name: Jocylyn Carlisle
Location: London

Age: 33

When Symptoms Started: 3 years ago

When Diagnosed: feb 06

Symptoms:
Left wrist pain, numbness radiating up forearm to elbow. Recently symptoms increased and now apparent in the right wrist.
Frequency of Symptoms:
More frequent over the last 18 months. Very rare to have pain freen week!
Tests Conducted:
X-rays, bloods & MRI
Prescribed Treatment:
Starting intense Physiotherapy very soon and hope that this will help.
Comments:
Was mis-diagnosed at first with De Quervains tenosinovitus, apparently very similar in diagnosis. Although sometimes quite painful, it is more frustrating as it can hinder my day to day routine, and being a secretary, it is disruptive to my work. Fortunately, I work in the NHS and have a good support network.
What I know about Wartenberg's Neuritis:
Not much learnt at present, information seems to be vague, with no real direction as to long-term problems.
(Submitted on March 6, 2006)

Name: Jennifer
Location: Saint Paul, MN

Age: 44

When Symptoms Started: August 2005

When Diagnosed: March 15, 2006

Symptoms:
Currently I have sharp pains and electrical-like sensations in my first two fingers, thumbs and around my wrists (now both hands). Sometimes up forearm. Also wake up with pain in my feet until I start moving them.
Frequency of Symptoms:
Feet pain just started. Hand pain seeming to dissipate. Hope it continues.
Tests Conducted:
Blood tests, EMG, other tests for tendonitis.
Prescribed Treatment:
Just started physical therapy for my hands - seems to be helping. On my 5th session of acupunture (self-prescribed)- seems also to help. I'm in a wait and see mode.
Comments:
After going to a number of doctors, I researched the top doctors in my area and saw a hand specialist. This is where I got the diagnosis. I'm going to pursue and second opinion.
What I know about Wartenberg's Neuritis:
Is Wartenberg Migrant Sensory Neuritis the same as Wartenberg Syndrome??
(Submitted on March 17, 2006)

Name: Tammy
Location: Pietermaritzburg, South Africa

Age: 26

When Symptoms Started: +-8 years ago

When Diagnosed: 2006

Symptoms:
Pains in both wrists and hands pains up forearm and elbows, restless legs numbness in big toe, pins and needles in pinky fingers
Frequency of Symptoms:
every one or two months lasting about a week latest episode has lasted about a month
Tests Conducted:
nerve conduction, blood tests
Prescribed Treatment:
carbilev 25/100mg and vitamin B tablets (did this on my own - seems to help, thought it might have something to do with stress)
Comments:
was first diagonosed by gp as carpal tunnel syndrome and ulna neurosis, orthopeadic surgeon said it was strange to have both problems together and referred me to neurologist for tests and second opinion neurologist made diagnosis
What I know about Wartenberg's Neuritis:
nothing except on this web page
(Submitted on April 3, 2006)

Name: Patricia Barker
Location: Western Australia

Age: 59

When Symptoms Started: 2003

When Diagnosed: June 2006

Symptoms:
2003 inital severe pain at back of right leg on stretching, subsequent numbness in heel and toe

Numbness on side of left thumb from march 2006
Frequency of Symptoms:
Pain disappeared after inital episode, left with permanent numbness
Tests Conducted:
Bood test to exclude lupus
Prescribed Treatment:
None
What I know about Wartenberg's Neuritis:
Just beginning to do web search
(Submitted on April 11, 2006)

Name: L.M.H.M.
Location: Kansas

Age: 38

When Symptoms Started: March 2006

When Diagnosed: June 2006

Symptoms:
Numbness, tingling in right jaw, down right arm, right leg. Vertigo, much dizziness, Ear pain, Ear clogged feeling. Migraine headaches, largely on the right side of head. ending up with mini-seizures and fainting ending up in E/R.
Frequency of Symptoms:
daily dizziness, headaches and numbness
Tests Conducted:
May and June 2006
Prescribed Treatment:
Neurotin, Ativan, Zoloft
Comments:
Continue to treat with Neurologists to find out what is wrong.
(Submitted on June 24, 2006)

Name: Rod Leonard
Location: Isle of Man

Age: 58

When Symptoms Started: 1998/2000

When Diagnosed: 2005

Symptoms:
Burning tingle in left side of right foot, then top of big toe over two to three years knees sides of hands. OK to bang or rub hard but gently touch or even swimming through water was very painful. Once that subsided the areas went numb, and are now almost back to normal. However I seem to have a similar problem around the RH side of my stomach, which hit off 6 weeks ago. Doctors now listening after I have done the research on the web.
Frequency of Symptoms:
on and off for many years since 1998
Tests Conducted:
Neurlogy tests in Hull Royal Infirmary England, blood tests
Prescribed Treatment:
None
Comments:
Thank God this site exists as I am sure my doctor thinks the whole thing is phycosymatic
What I know about Wartenberg's Neuritis:
Nothing at all, until I came across this site. Thanks people
(Submitted on July 31, 2006)

Name: mike
Location: west australia

Age: 57

When Symptoms Started: age 39

When Diagnosed: this year

Symptoms:
left foot started going numb fron great toe 17 years ago, then right foot couple years ago, most recently numb right thumb after getting shooting electric shock type experience up right arm when I put somr weight on it
Frequency of Symptoms:
permanent
Tests Conducted:
emg x 2, also ruled out - diabetes, vit deficiencies, parathyroidism,and circulation problems probably is tarsal tunnel syn as have been jogging for 34 years
Prescribed Treatment:
nil
Comments:
I was hoping my neurologist may have tried a cortisine injection (ankle) to see if it gave any relief
What I know about Wartenberg's Neuritis:
Its now got a name
(Submitted on August 31, 2006)

Name: janet
Location: melbourne, australia

Age: 42

When Symptoms Started: 2001

When Diagnosed: September 2006

Symptoms:
'pins and needles' in feet, hands, face - mainly lips, legs, arms, once in side. mainly on left side, but not exclusively.
Frequency of Symptoms:
At first, seemed to be triggered by a virus. The latest episode not so. Lasts several weeks. Occurs about once per year at this stage.
Tests Conducted:
Blood tests. Reflexes. Sensitivity (touch with tuning fork and with pin). Eyesight (tell me when you see the end of the pin). Co-ordination.
Prescribed Treatment:
None, but advised if feeling the onset of an illness to do something to unwind.
Comments:
Definitely gets worse with stress.
What I know about Wartenberg's Neuritis:
Neurologist spoke about sodium and receptors at the ends of the nerves. He also said to expect it to decrease with age as the nerves become less responsive.
(Submitted on September 12, 2006)

Name: Kris
Location: Wiltshire UK

Age: 37

When Symptoms Started: November 2006

When Diagnosed: January 2007

Symptoms:
A week of debilitating pins and needles, then lapsed into the background (I have a lot of pain from old injuries) Then a couple opf weeks later realised part of one fingertip had gone numb. Went to Doctor who referred me straight away as I had a couple of old numb patches on my feet from 2002 that had been out down to oedema.
Frequency of Symptoms:
Two weeks later suddenly got numb/tingly cheek, chin and lower lip on one side, line of pins and needles down the tongue (nightmare to concentrate with this one), and increased numb patches on my feet and right hand. Too early to judge any recurrence etc.
Tests Conducted:
Full spectrum blood tests, Electromyagram and MRI scan of neck and head.
Prescribed Treatment:
Doctor hadnt heard of it so wasnt going to do anything. I argued that I am sometimes in so much pain I cannot get out of bed without feeling sick, she the prescribed amytriptilene, will see how this goes. (I already take quite high doses of NSAID's)
Comments:
I seem to have been lucky to be referred so quickly to someone who knew what it was, but now dont know what to tell work as I cannot predict how it will affect me.
What I know about Wartenberg's Neuritis:
Onset age: Mean 35 years; Range 4th & 5th decades Pure sensory mononeuritis multiplex Course Episodic; Recurrent Some sensory loss improves, Other is permanent Sensory loss Discrete areas: Involvement of individual cutaneous nerves Sudden onset Distribution: Legs; Arms; Trunk; Face Pain In areas of sensory loss Painful dysesthesias: Induced by limb stretch or movement Laboratory Electrodiagnostic: Multifocal axon loss Pathology: Biopsy of affected nerve Perineurial scarring Chronic inflammation Axonal loss & regeneration: Differential fascicular involvement Endoneurial edema Immunoglobulin deposition
(Submitted on February 2, 2007)

Name: Mark Thomson
Location: UK

Age: 46

When Symptoms Started: 1998

When Diagnosed: 2001

Symptoms:
Chinese type burn on surface of right arm below elbow but 100 times more severe, then a patch on right leg below knee on shin.
Frequency of Symptoms:
Mine moves about in small patches but a full flare used to set off sometimes every area old area including the new one. Back of right thigh, left eye socket, left elbow, stomach just below ribs.
Tests Conducted:
Neurologist recognised it as Wartenburg's immediately, my brother realises he has it from the symptoms
Prescribed Treatment:
None available, but I've been told St John's Wort might help by a Naturopath (a free visit) that I visited recently, trying it out from today 19th Feb 07.
Comments:
I've found that drinking white wine is like putting petrol on a fire, most rose wine does the same. Stress is a big factor as well. I have an intolerance to Dairy especially all forms of Lactic acid, a bad dairy day seems to mildly trigger the neuritis. Since I've been off dairy (2 years) I have not had a single severe attack until this week. I've traced it to the burgundy grape Pinot Noir & STRESS.
What I know about Wartenberg's Neuritis:
N/A
(Submitted on February 19, 2007)

Name: Jennifer
Location: Ontario

Age: 30

When Symptoms Started: 1991

When Diagnosed: 200

Symptoms:
Constant numbness and aching pain in forearm & wrist.
Frequency of Symptoms:
Constant
Tests Conducted:
MRI, blood
Prescribed Treatment:
"Advil", physio ... surgery
Comments:
Woke up one morning feeling like I had hyperextended my elbow. Felt like someone was running a fork down my forearm when I straightened my arm. Eventually that symptom subsided and I was left with numbness in my forearm, below my thumb. Saw a neurologist who told me I had a "neuroma" on my thumb, no operation available, "too young". Went to physio 4X weekly for 2 years with no results. Family doctor told me to "take Advil" and "don't do things that aggrivate". Saw hand/wrist specialist for ganglian cyst on inner wrist of same arm in 2005, diagnosed as "trapped radial nerve" immediately. Surgery done to release nerve. Still not 100%, told will never be because of length of entrapment. Summer 2006, woke up and threw covers off and experienced same exruciating pain (on opposite arm) I remembered from the first time it happened. Exact same symptoms, but in different area (right arm was below thumb on side of forearm, left arm in more on underside of forearm below the thumb). Surgery scheduled for March 28th. Dr. optomistic about recovery of left arm, caught & repaired quickly.
What I know about Wartenberg's Neuritis:
Found a bit of information on web, suggesting that could be from arm pronation. Dr. very interested that same thing happened in both arms, years apart. Has small ganglian cyst on both inner wrists. Read online this could be contributing factor, however surgeon dismissed.
(Submitted on March 21, 2007)

Name: Wendy
Location: Australia

Age: 46

When Symptoms Started: Approx 10 years ago

When Diagnosed: August 2006

Symptoms:
Right leg pain so bad at times keeps me awake at night, Electic shock like feelings especially in hands,2 right toes numb,vertigo,right ear feels blocked from time to time so that when I speak it is echoing, Pain in the right shoulder blades, Nausea, Itching over legs, trunk and back for no reason,Right arm is weak and painful on lifting, Pain at the back of right knee shooting all the way up to hip and back, Right eye often painful.
Frequency of Symptoms:
Almost every day, can't wait to get out of bed in the morning as the pain in my back and leg is unbearable. Some days I think wow I have no pain today but then before long it is back somewhere, there isn't a day that goes by that I don't have some tingling sensation wheather it be in my head or mainly hands.
Tests Conducted:
MRI, Nerve conduction tests, Ultrasound, Spinal tap.
Prescribed Treatment:
Endep 10, Epilepsy medication, Lyrica, Viox, Methyl-prednisolone infusion,
Comments:
When the leg pain started 10 years ago I went to my GP who did an xray found nothing wrong, the pain seemed to go away up until 4 years ago when it came back and with everything else. I have been to a number of neurologists who diagnosed me with MS but due to the MRI and spinal tap results being clear now think it may be WMSN. Most of the drugs I have been on have not helped so I am now not on anything, occasionaly I will take a pain killer if it is really bad at night. It is very frustrating that there is little information on this conditon and yes you do feel as though you are going mad when you try and explain these syptoms to the doctor, I have given up and just putting up with it but this can be very draining not only on me but my family who can see that I am in pain.
What I know about Wartenberg's Neuritis:
Only what I have found on the internet which isn't very helpful and certainly not enough information.
(Submitted on March 22, 2007)

Name: Adèle
Location: U.K.

Age: 39

When Symptoms Started: 11 years ago

When Diagnosed: Suggested diagnosis in May '07

Symptoms:
Hi. My symptoms started at 28 yrs with light tingling pins & needles sensations in my hands, forearms, feet & shins. Gradually over 6 months or so, the pins & needles became stronger and permanent, 24/7. Eventually I had many tests done incl. MRI, x-ray, bloods, oesteo exam, spinal tap, electrical pulse tests etc. All came back perfectly clear, which was great news, but still baffling. My doc put my condition down to general Sensory Neuritis, which as all of you know, is the feeling of all the little electrical sparks which jump from one nerve ending to another. I was not aware specifically of Wartenbergs Migrant SN at that time. For me, the pins & needles are now all over my body, even in my eyeballs, gums, nose, scalp, tongue and everywhere 24/7/365. Although very annoying, like a noise in my body, they are not debilitating or very painful, rather just uncomfortable. However, in the last 3 years, my condition has taken on an extra dimension. In addition to the regular pins & needles, I now get what I call my 'Whirling Dervishes'. They are sudden, extremely painful attacks which target a specific spot of my body, which feel as though even the bone or joint is painful (always in the lower half, under waist level). The pain builds up until agonising and also gains accute sensitivity in the skin of the surrounding area approx 30cm x 30cm. I feel like I've been kicked by a horse, then had a cup of boiling water thrown at the area. The pain lasts between 1-2 weeks, then subsides. The weird thing, is that it then sneekily slowly moves around (over a day or so) to another area and attacks again. It then disappears for a few weeks, only to return over and over. These attacks have become so painful, I decided to re-visit my doc. This week he suggested WMSN.
Frequency of Symptoms:
Permanent pins & needles + sparodic but frequent painful attacks to one area before moving to another
Tests Conducted:
Including: MRI, x-ray, bloods, osteo exam, spinal tap, electrical pulse tests etc. All results came back perfectly clear.
Prescribed Treatment:
In the past: various epilepsy and anti-depressants - unsuccessful. This week I have started to take prescribed 'Gabapentin'. This drug is typically used for epilepsy, stroke, spinal cord injuries, shingles, amputations & rheumatoid arthritis - all mainly for nerve pain management. It works by making nerve cells less exitable, less likely to send pain messages to the brain. I'll see how I get on with the Gabapentin. It is already making me a little drowsy & dizzy, but I'm certainly positive and hoping it'll help!!
Comments:
WMSN seems to be slightly different in everyone I read about, but still really a variation on a theme. I think sites like this are excellent, as not much info is available about Sensory Neuritis generally. Good luck to everyone. Let's hope we find some good news that we can all use about this invisible but painful condition!! NB. I have more info available on Gabapentin if anyone is interested, I can forward it on.
What I know about Wartenberg's Neuritis:
Still learning
(Submitted on May 10, 2007)

Name: M. Michels
Location: Illinois

Age: 69

When Symptoms Started: mid 1990s

When Diagnosed: 1998-Univ. of CA San Francisco

Symptoms:
Tingling/sensations ... similar to Resless Leg Syndrome but throught the body surface, partiicularly those areas that are exposed to air (face, scalp, hands, tongue, lower legs. I have thought this could be allergies as some areas of my home and work can be dustier than others. No numbness. I also find that the symptons present when I STOP, am still, or definitely tired. Definetely when I first get in bed. Sometimes, lately, the symptoms are so strong when I awaken that I feel as tho I am pushing against a force to move out of bed. I am also aware of ear pressure. I also have awakened with very strong sensaations in my hands (that are uncovered).
Frequency of Symptoms:
Until the past months, the frequency has usually been when I have been still, tired. But now there are symptons, particularly on my face, hands and lower legs a good deal of the time.
Tests Conducted:
Various MRIs, CAT scans,
Prescribed Treatment:
Up until recently Gababentin at night only ... sometimes two when I am particulary tired. Now I am trying to take one in the morning as well. Also taking xanax .25.I am also now on a low dose trial of blood pressure Rx.
Comments:
I have concern that stress plays a part as there is a good deal of family activity at this time. Also I have had a significant rise in blood pressure...which has always been normal.
What I know about Wartenberg's Neuritis:
I did receive a print-out from Dr. Janet Lin, Walnut Creek, CA ... Joural of Neurology, Neurosurgery, and Psychiatry 1983:46: 1-4 from the John Muir Medical Center, Walnut Creek, when I was diagnosed. Title: The migrant sensory neuritis o Wartenberg. I also registered with NORD, National Organization for Rare Disorders (203) 746-6518 - NORD-RDB.com. I did not purse this channel ... it is general ... and you had to sign a form ... and then received solitications for funds. I'm interested in perhaps seeking out a doctor at the University of Chicago. I saw a doctor in my area and was told that the diagnosis of WMSN 'was out of favor"
(Submitted on May 20, 2007)

Name: Linda
Location: The Netherlands

Age: 29

When Symptoms Started: 28 june 2006

When Diagnosed: 15 june 2007

Symptoms:
- painful tingling in righthand - electric shocks through right hand - writing became difficult - less sensation in right hand - less power in right hand - feeling of "marching ants" right under the skin - turning of wrist is painfull - touching skin is painful - pain keeps me awake from sleeping
Frequency of Symptoms:
All symptoms happen randomly, sometimes dull, sometimes very very painfull! I've been having these pains for a ayear now.
Tests Conducted:
: ) everything they could think of...
Prescribed Treatment:
- painkilling: amitriptyline, 70 mg a day to dull the pain (works!) - painpoint and massage prior to surgery (still to come in 2 weeks) - neurolyse: operation to "free" the nervus radialis superficialis (end of july)
Comments:
I've read all the other stories and all the internet could come up with. So far I'm lucky that one doctor over here is skilled enough to help me. He was the nineth doctor I contacted be he turned to be a winner!
What I know about Wartenberg's Neuritis:
- painkilling helps, they use anti-depressionpils or epilepticpils. - painpoint is possible with massage: the doctor injects the nerve directly with something stronger than lidocaine. Then you're able to massage the tender nerve and let your doctor know exactly where the nerve is the most tender. - neurlyse-operation: making the nerve "free"again from surrounding tissue
(Submitted on June 15, 2007)

Name: Rich
Location: Massachusetts

Age: 56

When Symptoms Started: 18 months ago

When Diagnosed: 14 months ago

Symptoms:
Began with feelings on intense heat on my buttocks. Soon after I began to have a tingling, sometimes pins and needles sensation on my legs, feet, arms and hands. At times this also spread to my head. It then progressed to the sensation of sharp needles being stuck into me, usually my feet, but arms, hands, legs as well. I times, the pain made it difficult to walkI now have severe lower back pain, which may or not be related.
Frequency of Symptoms:
Tingling/ pins and needles daily. Sharp needle pains - frequent
Tests Conducted:
MRI, EMG, Blood work
Prescribed Treatment:
Gabopentin - 1200 mg. daily
What I know about Wartenberg's Neuritis:
My neurolgist has seen only one other case. Most of what I've learned, I 've learned on-line
(Submitted on July 2, 2007)

Name: Margaret Sullivan
Location: New Zealand

Age: 56

When Symptoms Started: 4 to 5 years ago

When Diagnosed: Approx. 3 years ago

Symptoms:
Started with a terrible pain in my right thumb when I stretched my hand. If felt as though a knife had slit my thumb. Then my thumb and the area around the base of the thumb had a burning feeling (like a hot water scald) yet the whole area also felt numb. Subsequently I have had the same or similar in almost all my fingers, the big toes on both feet and both heels. They have all been quite tender on the skin yet numb at the same time. Also, I had an episode of creepy crawlies on my right thigh along with a burning sensation and itchiness. This has eased off quite a bit. Currently my worst symptoms are in the middle finger on my left hand - if I stretch my hand there is an agonising pain goes through the finger.
Frequency of Symptoms:
Almost contstant somewhere or other in my hands or feet for the last 4 to 5 years.
Tests Conducted:
Nerve conduction tests.
Prescribed Treatment:
Medication was offered but I declined as I didn't like the sound of the side effects.
Comments:
Not a life threatening disorder but very painful and unpleasant at times.
What I know about Wartenberg's Neuritis:
My Neurologist, who has been practising for many years, has only ever had about 10 patients with WMSN. Could take years to go away.
(Submitted on July 28, 2007)

Name: Sara Davis
Location: Texas

Age: 69

When Symptoms Started: June 2007

When Diagnosed: August 2007

Symptoms:
Shooting, shocking pain from thumb to elbow when I would reach out. Thumb has been numb from the beginning.
Frequency of Symptoms:
Not that often
Tests Conducted:
Xrays and doctor evaluation. A Physical Therapist had worked with my hand and the electric shocks are less frequent. I needed to know what specialist to go to first.
Prescribed Treatment:
Hand brace to wear 24/7 and take Mobic, 7.5mg, every night for inflammation of joints
Comments:
No surgery required.
What I know about Wartenberg's Neuritis:
Inflammatory should help relieve the pain. I'll get the prescription filled today and take the first pill tonight.
(Submitted on August 21, 2007)

Name: Kristin
Location: Wiltshire

When Symptoms Started: as above

Symptoms:
I now have fibromyalgia aswell.
Frequency of Symptoms:
daily but fluctuating
Comments:
I have started a google group for wmsn if you want to chat: http://groups.google.com/group/wmsn
(Submitted on October 5, 2007)

Name: Jodie Wallis
Location: London, England

Age: 25

When Symptoms Started: March 2007

When Diagnosed: September 2007

Symptoms:
First symptoms began with a sudden onset of nerve pain at the top of my left arm and under my right armpit. Painful on touch, however light, and on certain movement. Area was also numb by the next day. This was accompanied by a severe lack of energy and mood swings. 6 weeks later I had a second attack on my right forearm. This was accompanied by numbness and strong tingling sensations as well as nerve pain. I also had tingling sensations in my legs and hands at this time. Again felt very emotional and tired.
Frequency of Symptoms:
Since the first 2 attacks, I have had no other distinctive period of new pain, however had intermittently felt tingly sensations and the nerve pain and numbness has never fully left either of my affected areas.
Tests Conducted:
MRI, nerve conduction tests, blood tests
Prescribed Treatment:
no medication prescribed
Comments:
My GP suspected MS especially as I suffer from other autoimmune conditions (Coelaics, Morphea and I have an under -active thyroid). The first neurologist I saw was hopeless and as good as suggested I was making a mountain out of a molehill/slash imagining it! The second neurologist diagnosed me with WMSN straight away. Does anyone else suffer from severe emotional days when they are experiencing symptoms?
What I know about Wartenberg's Neuritis:
nothing apart from what I have read here. my consultant knew nothing really apart from the fact that my symptoms largely fit. she said there was no real treatment and that the condition was mostly benign.
(Submitted on November 5, 2007)




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