hi, I'm new here. I have had neuropathy for about 10 years - at first it was extreme pain in hands and feet, then thankfully it all went numb. I am now numb up to my knees, bilateral foot drops, nerve damage to my feet has twisted then plus I have a clubfoot type deformity from my neuropathy. I wear foot drop splints (AFO's) that really help with walking. I also have truncal ataxia, but that is not necessarily related to my peripheral neuropathy.

My hands are currently rolling up into balls - typing has become difficult. I have been given some special gloves that help hold my fingers out straight so I can type etc (otherwise I type on my nails). My fingers are becoming very weak and clumsy and I frequently drop stuff. I also miss time things because my fingers are so slow to respond.

My dx is sensorimotor axonal neuropathy, and lately has been progressing quite fast. My neuropathy is caused by my lupus, which affects my brain and central and peripheral nervous system. I have a variety of other problems like truncal ataxia, etc etc.

Anyway, I would be interested in any information about the way my fingers are rolling up into a ball. This happened to my toes, and while annoying to have clawed toes, it obviously is a much bigger problem in my hands.

nice to meet you all - btw, I am off on holiday tomorrow so I will try and check back in, but if it takes a while that's why.

cheers

raglet

This is very horrible for you. We don't see posters here
with such dramatic damage.

Motor issues, have to be a nightmare. The fact that no one is responding yet, is that they are considering this as frightening.
I sure do.

If you have autoimmune issues, I wonder if you have been
offered plasmapharesis? And or IVIG?

Have you had other opinions? I think the severity of your
disease places it as a more severe and perhaps multicausal situation.

This link shows the tests needed, and potential treatment where IVIG is included.
http://neuromuscular.wustl.edu/antibody/pnimax.html
The first entry on the site sounds like what you have posted.

This has to be very hard to live with!

Hi. I just wanted to say Welcome.

Mrs. D is one of our foremost experts on these forums. She's helped all of us here, quite a bit.

I can only imagine what you are dealing with. You must be very strong. I am glad you are going on a holday. And I hope you enjoy your holiday.

As they used to say on Star Trek. Live Long and Prosper.

I wish you well.

Melody

thanks for your answers guys - I really appreciate the support.

I have had all of the state of the art treatment for lupus, which is what is causing the neuropathy, including rituxan which is $10,000 per infusion, so I am very lucky. This kills off my b cells, which helps stop me creating the autoantibodies that attack my nervous system.

I suppose my damage could be called severe - I am just so used to it I don't see it like that. But I have to say numbness is MUCH preferable to that terrible soul destroying pain that I used to experience (on a scale of 1-10, that pain was a 22 !) so really I am not too bad.

I also have damage to my cranial nerves affecting my tongue, swallowing etc, I guess that technically isn't peripheral neuropathy but it is all part of the same process for me.

I am awaiting another nerve conduction study to see how things are doing.

Gotta run, off to Canada today which is really exciting for someone who lives down under.

Catch up with you soon (I'm sure they have computers in Canada hahaha)

Raglet

Hey Raglet!

I was not here when you'd stopped by!

Please let us know when you are back around!

I hope I am here the next time you drop in!

Take care!

Hi. Welcome and am I so sorry for all you face. I don't have much to offer other then this is a warm and very helpful community. I have learned so much from the people here. hang in there.

thanks guys - I am still away on holiday (yay!) so I am not on the internet much. But thank you for the very warm welcome. I hope to be more present when I am back home (bbuuurrrr, I am mid summer here on holiday in Canada - it will be back to mid winter at home - geesh, and I have been swimming at the beach).

cheers

raglet

Hi Raglet...hope u r enjoying your summer place up here in Canada.


take care