[Raglet]

anyone else here with sensori-motor neuropathy ? Especially the motor bit.

I have had an increasing loss of motor nerve function in my toes feet and now up to my knees for quite some years. It has been getting worse for about 10 years.

My toes don't really move at all, I have lost a lot of function in my plantar nerve (along the bottom of my feet), my ankles are shot and I wear foot drop splints which are fab, though very sweaty in the summer months.

But now it is starting in my fingers, and I am just wondering how this will play itself out. My neuro says it usually spreadys to the hands once it reaches the knees, and i am awaiting another round of nerve function studies in legs and arms/hands.

At the moment all that is happening with my fingers is that my finer movements are being effected, but I am worried that my fingers may become as useless as my toes. Toes that don't move are not a biggie, though it does make my balance problem worse, but fingers that don't move would obviously be a much bigger problem.

any one with any experience of this ?

thx guys

raglet

If anyone is interested (I know how many of you love to google ! Me too hahaha) here is a link to some good basic information about sensorimotor neuropathy

http://healthguide.howstuffworks.com/sensorimotor-polyneuropathy-dictionary.htm

 

[Zoi]

Hey Raglet,

I don't know how similar this is to what you have but in December my hands started being numb, I went to the neuro, got an emg and was told I have mononeuritis multiplex affecting both the sensory and motor parts of the ulnar and median nerves. Neither the neuro nor the rheumy knew if aps or lupus were causing the neuropathy and very oddly at the time besides the numbness, there was nothing wrong with the movement in my hands. About a month later though, I started not being able to grasp things with one hand and that rapidly evolved to barely being able to move that hand (i.e. palm, wrist, fingers). So I had another emg that showed things were getting worse fast, pred was upped to 60 mgs for a while and when that didn't work aspirin was added to my heparin mix. That seemed to do the trick at least as far as the motor bit of the deal is concerned and my range of motion is almost intact at the moment. Hands are still quite numb though, one more than the other, as the sensory part of the nerves is apparently now damaged.

If I remember right, you have aps too yes? Have you tried aspirin at all on top of your coumadin/heparin? Or have they ruled aps out as the cause of the neuropathy? If it's surely lupus related, then did pred help your legs at all? Maybe the pred increase can help your hands somewhat?

I really hope you feel better very soon,

:flowery:

Zoi

 

[Raglet]

hi Zoi

Yes, i do have APS and have been on heparin for many years, so I have no idea if that helps or not.

We definitely do share some similarities, my neuropathy has been called mono neuritis multiplex at times, at other times they call it polyneuropathy.

Steroids unfortunately don't help my neuropathy, though they do help the rest of my lupus. It is great to hear that your motor function has improved.
thanks for your reply

raglet

 

[Lily]

Hi Raglet,

I'm not much help I'm afraid because they are still trying to sort out what to do about my mononeuritis multiplex which so far hasn't affected my hands :sigh:

I do hope that your doc finds something that works for you :hug:

love
Lily

 

[halfpintfl]

:sad: Hi Raglet, I just wanted to tell you that I am so sorry that you have taken a set-back, I hope the pain can be controlled for you. Your words have helped me many times on this board, and I just wanted to let you know. I wish there were something I could do, but you are in an area that I don't know about. You are not alone, you are in my thoughts each day. Please rest, and get better soon.:wink2: ​

 

[lazylegs]

Hi Raglet,

Add me to the list. I have had mononeuritis multiplex for 20 years. The nerve conduction study shows it is both distal and proximal. Both sensori and motor are affected in the arms and legs. The arms are not as severe as the legs. In both cases it appears to be exercise induced to a certain extent. Since I am right handed that hand is weaker. In the legs it is the left. The legs are numb all the time. In fact I am numb right up to my waist now. In the hands it comes and goes.

Both Prednisone and Cell Cept helped for awhile. Rituxan does the best to lessen the symptoms for me.

I hope this is just a temporary symptom for you.

Take care,
Lazylegs

 

[Jirel]

I don't have mononeuritis multiplex but lately I've been having more and more problems with "trigger finger" and my ring finger twitching like mad which someone told me was a type of trigger finger. At first it was just the index finger on the right hand, now its also the index finger on the left hand and that ring finger.

I work on a computer all day so this is something of a concern.

 

[eagle55]

HI Raglet, i just wish i also could do more for you .you have helped me so much escepically thur my getting my disabilty.. this thing with my cns has just stared i think, i drop things and sometime my feet and legs just do not want to work. and my hands and arms just jump. when you are out in public it is kindafunny to watch other peoples reactions. but i have not had any test yet. i am just holding off on this one for awhile. i do hope you get feeling sooooooooooooooo much better soon. Freebird.sue

 

[SharonMV]

Hi Raglet,

Have they ever tried IVIG to treat your neuropathy? I know it helps with some types of peripheral neuropathy, CDIP & other neuro symptoms. I hope this problem with your hands doesn't progress any further.

I do get numbness & tingling in my hands, but it comes & goes & is not progressive. I think it's carpal tunnel, but is definitely related to my Lupus.

Sharon

 

[Reggie]

Hi Raglet
I to have CNS lupus and it definately affects my hands fingers. They constantly tingle and I cant feel much. Yes I do drop lots of things. My last round of nerve conduction test just said I had reduced sensori motor ability.

I have only been diagnosed since 2006 so I dont know what happens in the long term.

Keep well
Peta

 

[Raglet]

one thing that I have a lot of problem with is twisting of my feet (due to motor nerve damage - the opposing muscle has nothing to pull against, so it pulls my foot/let out of line). I have started noticing this happening in my hands, and my left hand is happiest in a loose fist - my toes have ended up totally clawed due to loss of motor function, my foot had arched up a lot and the whole foot has twisted, so I am just hoping that the same doesn't happen to my hands. Having my fingers just roll up into a ball and stay there sounds pretty nasty.

Also seem to have developed a wrist drop on my left, to match my bilateral foot drops. Just annoying really.

Nice to know i am not the only one out there with this stuff - unfortunately mine has never fluctuated - once I loose function it just doesn't come back. Also noticing that my tongue is even weaker, now have just about zippo strength on the left side of mytongue.

oh well, that's life I guess

raglet