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.