:sad::sad: I have been disgnosed with Chronic Severe Demylinating Axonal Polyneuropathy involving the Sensory and Motor Nerves. Also showing dead muscle tissues in my legs! Any of you have this problem with your lupus. I am a CNS lupus patient with mild vasculitis and have had the neuropathy for several years. The neuropathy used to not be so bad but over the years that nerve damage mess is eating me alive like a cancer and making me sick as a dog.
My feet feel dead all the time and hurt like carpul tunnel syndrome. Nerve pain get's so severe that it is causing me alot of problems. Then I get Parkinson types of shakes in my left hand and tremors that are irritating. The carpul tunnel nerves in my hands they hurt so bad and burn like fire. It's bad nerve damage in my hands.
What medications are any of you using to try and prevent this. I hate to say it but I have just had to switch to another Neurologist and Rheumatoligist because my other two doctors have just been lousy! One is always to busy and when I go in to see her she's in and then out and never does any testing. And my rheumy barely does testing too! I keep complaining that I have problems with nerve damage and they ignore me! I actually had another doctor just recently diagnose me with the CNS Neuropathy. Was treated for it before by my other doctors and then when I moved I had to pick these two dippy doctors because they were close by. But now after having them and getting worse I now know it's time to change. There has been a repeated history of this demylinating neuropathy. Over and over but it just never really gets treated right.
Wonder if acupuncture would help? :sad: I'm sick and tired of hurting!
My feet feel dead all the time and hurt like carpul tunnel syndrome. Nerve pain get's so severe that it is causing me alot of problems. Then I get Parkinson types of shakes in my left hand and tremors that are irritating. The carpul tunnel nerves in my hands they hurt so bad and burn like fire. It's bad nerve damage in my hands.
What medications are any of you using to try and prevent this. I hate to say it but I have just had to switch to another Neurologist and Rheumatoligist because my other two doctors have just been lousy! One is always to busy and when I go in to see her she's in and then out and never does any testing. And my rheumy barely does testing too! I keep complaining that I have problems with nerve damage and they ignore me! I actually had another doctor just recently diagnose me with the CNS Neuropathy. Was treated for it before by my other doctors and then when I moved I had to pick these two dippy doctors because they were close by. But now after having them and getting worse I now know it's time to change. There has been a repeated history of this demylinating neuropathy. Over and over but it just never really gets treated right.
Wonder if acupuncture would help? :sad: I'm sick and tired of hurting!