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.

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?

Hello wilt0030
How was your appointment with neurologist?
JOYL5

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.

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?

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

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, **