Migratory Sensory Neuropathy of Wartenberg
 

Hi,

I've only just been diagnosed with this condition. There appears to very little information on it and certainly nothing up to date from what I can see. I'd be interested to know if there is anyone else out there suffering from this. I'm particularly interested in the progression of the illness as, although it described as benign, there is no sign of improvement in my case and my neurologist has told me that it is unlikely to get better.

Looking for a little light at the end of this somewhat painful tunnel :)

Welcome to NeuroTalk:

Here is an article from 2010.... stating that most of the patients remit and recover over time. Avoidance of over stretching may help prevent further attacks.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2910306/

This is an outline of features:
http://neuromuscular.wustl.edu/nanat...tml#wartenberg

Perhaps using supplements that aid in remyelination may help.
active B12 called methylcobalamin
active B6 called P5P
active folate
fish oil.

There is new evidence that statins for lowering cholesterol prevent remyelination of axons and so avoidance of this class of drugs may help. These drugs interfere with growth factors of neurons.

While this article is complex, it is significant:
http://www.jneurosci.org/content/28/50/13609.full.pdf
You may find easier to read discussions with a Google search
using keywords : statins remyelination

It doesn't demyelinate, that's a defining feature!
 

Mallia, have sent you a friend request, I have WMSN and wrote the Wikipedia page plus have tracked down a few more through the years.

Not only do statins affect remyelination.... but they damage neurons in other ways.
There are 4 types of afferent nerve fibers that send signals to the brain ... This post illustrates the 4 types. Only C fibers are unmyelinated (and these include some of autonomic fibers from organs as well.)
http://neurotalk.psychcentral.com/thread194446.html

This new link has a PHOTO of damage to neurons from statins:
http://www.sciencedaily.com/releases...0510150143.htm
This is the statin thread here:
http://neurotalk.psychcentral.com/post665830-5.html
There are many statin threads on PN forum and the Parkinson's forum which you can use the search function to find. Also there are some researchers who are suggesting, statins may damage mitochondria within cells, leading to the cell losing functioning ability.

Another family of drugs also damages neurons. Fluoroquinolone antibiotics:
http://www.sciencedaily.com/releases...0703160623.htm
This photo is illustrating damage by Cipro. Other fluoroquinolones are Levaquin and Avelox.
This family of drugs is often given without concern for the DNA damage they may cause in our nerve cells. Therefore they are implicated in some PN damage.

This is my fluoroquinolone post:
http://neurotalk.psychcentral.com/post661103-2.html
This damage may be lasting, and only appear after treatments are over with these drugs.

So therefore, combine a genetic reason for Wartenberg Neuropathy with use of drugs that are damaging may cause further complications, and differing presentations of this form.
The first link I provided, suggested that patients may have a combination of factors contributing and comorbid diagnoses.

Hi
I only just found this site so I know I am a few yrs late (to your first post anyway)
I have just been diagnosed with this condition also. I have had symptoms for 9 years now. started in my middle toe on left foot then spread to toes next to it. then same on right foot. I dont have the pain that most people have had with this condition. I get tingling/creeping feelings on the spots before they go numb. 9 years later and I have not regained any feeling in my toes. Once goes numb thats it for me. I now have spots totally half my face, my skull, left pinkly finger (typing is very wierd cos use that one a lot when typing haha) couple of spots on my thighs/legs. and I cant feel my breasts.

I had 9 years of going to Dr after Dr. Had every single one of them look at me strange and go hmmm never heard of that before, or thats soo strange.
Start to think its in your head. I have had more blood tests than I can count, every one of them came back normal. Nerve conduction test, which was normal and MRI on brain and back.
After a 3 yr wait finally got to see Neurologist and funnily enough he had just been to a conference where another Dr had presented this condition. my Dr said 3/4 of dr's there had never heard of it before or had patients with these symptoms. If my Neurologist had not attended I may still be waiting for a diagnosis.

I did some research and found that most people who have symptoms had them go away after 4-6 yrs. and symptom onset is usually in 30's. I was in my mid 20s and symptoms for 9 yrs.

Sorry I cant give you a light at the end of the tunnel but I can let you know that you are not alone.

I go back to neurologist in september and from appointment letter its 2 hours long and may require testing in other departments (I told my Dr if he could find any studies or other Dr's looking to do studies I would sooo be a guinea pig) If i get any other updates/news on condition I will update :)

I believe I have this as well
 

I see this is old so before I go into a long thread I want to make sure it is active

I am so pleased to have found a relatively active forum about this disease after searching the internet= would any of the members on this page please contact me.....my son has just been diagnosed. =Sept 2016.

Msnw
 

So what has been the progress this far. Any improvements or it has worsened?
I have had the condition for the last 6 years and its getting worse for me.

Msnw
 

I have had the condition for the same condition for the last 5 years with no reprieve but the condition seems to get worse, with more pain in various extremities of the body, fingers, and feet.
DRs tell me that there is no cure for the condition. I have tried food diets, acupuncture all to no avail.

If your son gets any help please let me know too.

I am going to see an neurologist on 29 Dec I will inform you of there is anything of interest.

Thank you for replying wilt0030. I am unable to work out how to set up private messaging at moment - as would like to exchange information without public able to see everything. (though obviously if there was anything helpfull to others would post in forum.) Are there any other ways to contact?? Please let me know how your appointment goes....my son has been referred to pain management clinic in Feb. He is in UK.

Thanks for this Mrs. D. I developed sfn from Avelox. That's the first tie I saw a picture of what occurs to the mitochondria.

Hello wilt0030
How was your appointment with neurologist?
JOYL5

Wartenberg's migratory sensory neuropathy: Desperately seeking help!
 

Happy New Year to all and hello as I am new to the group yet have been reading for a long while before I have finally plucked up the courage to ask for help.

I have had this condition for some 6 years although have only recently been diagnosed; I have been poked and proded, tested and re-tested for everything you could imagine.

My condition started where an epidural went catastrophically wrong and I immediately felt numbness and chronic pain since then have had a wide range of of nerve related pain, burning, intense bolts of pain that I cannot fully describe to another human being to give justice but I know as fellow suffers you will know exactly what I mean.

Complete numbness in toes, parts of feet, fingers, then where I had intense pain in other parts of my body the nerves burnt out and I have considerable numbness and patchy feeling in arms, legs, hands and left cheek.

I have noticed that I am getting the same pain and numbness creeping into other areas too.

I am concerned more so about my sudden jolts which wakes me at night and a spasm/cramping which takes over my legs and arms. I will go to stand up and cant and the it goes away and then comes back again and again. Especially bad in afternoon and evenings or on waking.

More recently I get a heavy weighty feeling in my limbs and wake up often where I cannot feel a leg or arm or hand.

Every day is different and I cannot predict what or how bad I will feel. I have had lots of good days over the years and made the most of it but those are getting less as the condition evolves (cant find another way of describing it).
Some days or hours I can do anything and appear to be perfectly 'normal' however several moments later or days later I am completely the opposite and cannot control the pain.

Stretching is difficult and can trigger pain and so if I keep still I am safeguarded from the hypersensitivity of the nerves burning.

Pain relief has been a nightmare as they have either given me things that make me feel very drowsy and out of it or theraputic methods like acupunture made it a lot worse and triggered all sorts of terrible nerve crawling pain.

I know my symptoms can be shocking (so apologies to any other new members) but I really need help so would be very grateful to hear of others who recognise the same and ask how you manage your pain/symptoms best or have any of you tried the statins or other methods recommended by the other help chat messages?

Huge thanks xx

P.S How do you describe to other people what you have got as when I try to tell people they almost turn the other cheek, people just dont register or ask again, its like a stigma of ignorance. If I had the very similar condition label of 'MS' I know people would in some way treat me differently as it is much better known and support is availaible. I feel so isolated with this, dont know how to get support for my home and for me and I would value your support.
:grouphug:

To Looking4 magic wand
 

I know how you feel, I spent months searching for people diagnosed with Wartenbergs who were active on forums. I have posted here a couple of times ** There is lots that I would like to ask you and I think it would be mutually helpfull....not least, as you say, to know that you are not alone. I have sent friend requests to many previous posters and received no response...so don't know. Perhaps the disease just wears people out. Stay in touch** JOYL5

Update
 

Would be really interested to hear of an update on how you got on at the neurologist as my symptoms are getting increasing disabling and sound like yours.
Best wishes

where are you all??
 

Dear L4MW
I feel for you.. I searched long & hard to find a forum about Wartenbergs ...I just would find it comforting to talk to other people about how they are diagnosed, what medication, if any they have etc. Unfortunately, many people post once and then not again.... perhaps they post only when they are at their lowest ebb, **

Appointment with neurologist
 

Not mucb happened they are still unsure. One Dr admited he was not familiar with WMSN he then accepted the working diagnosis of WMSN but he exluded MS and lupus.
I have no idea what it is. The pain still continues and other discomforts

What about your son?

wilt0030
 

Had 2nd opinion with main Neurological hospital in London, said pretty much same as yourself: ruled out MS etc. but no definitive diagnosis of WMSN, unless they do nerve biopsies which they did not want to do. Referred to pain management clinic, not much help there either except for prescription for pain killing meds. which he does not want to take. Now waiting for referral to a Counsellor to discuss dealing with stress!!
He tries just to get on with his life but quite self limiting as excess of walking for example, causes him to suffer more next day. After all this still looking for help!! Anyone reading this, please post your experiences etc. Thank you.

I have had no major breakthrough. Except on integrative Dr suggested low dose neltroxone 300mg. Seems to help.
Diagnosis remains WMSN. fortunately no worsening of symptoms but flare up from time to tome
How about your son?