[Augie]

Anyone else out there who has mononeuritis multiplex, neuropathy stemming from polyarteritis nodosa, a form of necrotizing vasculitis? I've searched messages (and leardned a lot) but haven't seen mention of this by anyone else. I'd be delighted to communicate with someone else with this particluar aliment. Thanks.

[Raglet]

I have been dx with mononeuritis multiplex as part of my lupus.

raglet

[Augie]

Originally Posted by Raglet

I have been dx with mononeuritis multiplex as part of my lupus.

raglet

What are your symptoms? Which meds are you taking? Any general advice?

[Raglet]

I have both sensory and motor damage - a bilateral foot drop, numbness up to my knees, damage to a nerve in my hip which means I drag one leg (can't lift it off the ground), damage to half my tongue (one side doesn't work), a small amount of damage to my swallowing, - the latter two are from damage to cranial nerves. I have lost my gag reflex - to be honest, I can never remember it all. I am sure I will keep coming back to this post to add in new things, so watch this space. Oh, I just remembered I have a slight facial drop, plus patchy numbness on my face.

I also have various other problems which are central, so are not part of my mononeuritis but are equally annoying (like my left arm which is becoming very weak and my fingers very fumbly). My neuro is hoping that the nerve in my hip will heal and although I am trying to be optimistic I am not holding my breath as I have never got much if any function back once it has gone.

I am basically treated with prednisone, iv steroids as necessary, and rituxan infusions, plus a zillion other meds for other aspects of my lupus plus my epilepsy.

How about you ?

raglet

[Augie]

Originally Posted by Raglet

I have both sensory and motor damage - a bilateral foot drop, numbness up to my knees, damage to a nerve in my hip which means I drag one leg (can't lift it off the ground), damage to half my tongue (one side doesn't work), a small amount of damage to my swallowing, - the latter two are from damage to cranial nerves. I have lost my gag reflex - to be honest, I can never remember it all. I am sure I will keep coming back to this post to add in new things, so watch this space. Oh, I just remembered I have a slight facial drop, plus patchy numbness on my face.

I also have various other problems which are central, so are not part of my mononeuritis but are equally annoying (like my left arm which is becoming very weak and my fingers very fumbly). My neuro is hoping that the nerve in my hip will heal and although I am trying to be optimistic I am not holding my breath as I have never got much if any function back once it has gone.

I am basically treated with prednisone, iv steroids as necessary, and rituxan infusions, plus a zillion other meds for other aspects of my lupus plus my epilepsy.

How about you ?

raglet

I got it after a bout of necrotizing vasculitis, 5 years ago, that put my in the hospital for nine days and almost killed me. As soon as I came out of the hospital they diagnosed mononeuritis multiplex, which, I guess is not that common. The physiatrist I visited soon after I left the hospital said I was his first case. I too have foot drop, weak ankles, some wasting of the muscles in my legs and peripheral neuropathy. I've been on lots of different pain meds, but neurontin works best for the neuropathy pain, which, however, continues to get worse. The problem with the neurontin is the brain fog. They don't call it "morontin" for nothing.

This is doubtless muck more than you want to know and it sounds like you have plenty of problems of your own to deal with. It is comforting, somehow, to find someone with the same basic ailment.

Please let me know how you're getting along. You certainly have my sympathy.