[LBH]

: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!

 

[Raglet]

I have sensorimotor axonal neuropathy with radiculoneuropathy and yup, it's chronic and I guess it's severe. Numb up to the knees, bilateral foot drops, and I am now loosing motor function in my hands and wrists which is a total pain. I am increasingly having to splint my left hand due to wrist drop, and I am waiting for special gloves that will hold keep my pip joints rigid and stop them collapsing which is making typing tricky. My hands are starting to roll up into balls due to nerve damage, my toes have been clawed up for years due to nerve damage. Also a lot of damage to nerves involved with swallowing, tongue, etc etc - actually I find the motor damage a lot more of a problem then the numbness. Numb is just numb.

I have had every treatment in the book from prednisone (oral and iv), to plaquenil, imuran etc, iv cytoxan, rituxan, and nothing has really made much difference. It just goes on it's merry way. Oh, I also have a lot of numbness in my face, but fortunately to date the only motor loss in my face has been a mild facial drop on one side (just one corner of my mouth, it's not very noticeable).

One of the other thing that really annoys me about my neuropathy is the way my hands/feet/limbs etc get pulled out of place due to nerve damage - like developing club feet, who even knew neuropathy could do that, I sure didn't. My stupid knee caps have deviated and now point in the wrong direction ! Even more silly.

I am awaiting for more nerve conduction studies on my hands/ arms, legs and feet.

I also have cranial neuropathy and I have been finding that a really weird beast. one side of my tongue has lost all strength and is jammed against the side of my mouth which is annoying, as I get lots of ulcers where it rubs against my teeth. Then the doctor gives me stuff to put on the ulcers, but duh, I can't put my tongue out due to nerve damageout so by the time I stick my finger in my mouth with a blob of gel on it then try to get it on my tongue I have generally wiped it all over the wrong bit of my tongue or cheek ! So by the time I manage to get it on the right bit, I have generally anethetised half my mouth hahaha.

oh well, mostly I have learned to live with it. I am very excited about trying the new gloves that I am getting on Monday. I also have damage to my swallowing, but that seems to be my brainstem problems rather than neuropathy.

there are a few of us on the board who have problems with motor function due to neuropathy - there are lots who have pain problems with neuropathy. I started out with pain, but that progressed to the numbness and motor loss.

I do have an intention tremor in my three fingers of my left hand, but I don't think that is connected with the neuropathy. At least my neurologist has not said that it is, and she is usually pretty on to it.

I have never tried accupuncture for it though I did use it when I gave up smoking.

It is really important to have good doctors though -my neuropathy is monitored by my neurologist (who orders tests and generally keeps track of it) but it is treated by my rheumie as she is the one who has all the experience with lupus treatments. Works really well, but I do know I am lucky with my doctors - not lucky about a lot else with my lupus hahaha.

Have you had any nerve conduction studies lately ? It's good to have them every now and again to track the progression of it although it doesn't really affect the treatment any. there are also a lot of things you can do in terms of orthotics that really do help, like ankle foot orthotics which really help me walk (they come up to just below the knee). I am hoping these new gloves will do something similar for my hands


nice to meet you

raglet

goodness, all it takes is someone to mention neuropathy that affects motor functions and I can't shut up !!! What a rant.

 

[LBH]

Hi Raglet! Pleasure to meet you

Hi Raglet! You sound alot like me but my doctors for some reason just have not placed me on the stronger meds. Just prednisone and certain anxiety pills. I have had several Nerve conduction test done before and most have been Sensory but then at times they check it and Motor nerves have gotten involved. Never have had muscle damage before but my last EMG showed 8 damaged muscles. I too have the cranial nerve problem with one side of my mouth lower than the other but it's not too bad just yet but still feel it there! I just don't know what to do! My doctors I have been seeing for the last 6 years have not been good lupus doctors. The one I had before then were really good and on top of things. That is why I have switched and hope these two new doctors are more helpful! Medication wise! I never had it this bad in my hands before. It used to be more in my legs but now it's everywhere. Face, neck, legs, arms! Everywhere! I too need those carpul tunnel splints for my hands and arms are getting bad. Those tremors get on my nerves. You can't control them for nothing! Feel like I have Parkinson's disease but worse. Strange how this lupus effects us all in different ways. i wished I could have my life back again but I don't really see that happening. Even thinking about getting that voice thing now to place on my computer so I won't be typing as much. Had one before but it was not all that great so I am hoping they have improved them by now! I feel for you Raglet! Being in the same type of situation but not getting treated properly is a joke! Just goes to show you that we have to be very careful in choosing the right doctors and seeing that they care about our welfare. Which the ones I have seen have surely been lousy at treating me these past 6 years. But they were close by. Now I'm going to have to travel 33 miles to see the new doctors but heard they were good. I sure hope so! Thanks for your input! Will try whatever they give me and hope I get better. But the damage has been done really bad already. Just hope it does not get worse.

 

[lazylegs]

Hi Lynette,

Add me to the list. Lupus started for me with Mononeuritis Multiplex. It was fairly controllable for years. Three years ago everything went haywire. Despite treatment with Prednisone, Cell Cept and Rituxan the inflammation crossed the blood brain barrier and I developed reoccurring Transverse Myelitis. The neuropathy is from the bottom of the rib cage down. I also have cranial neuropathy.

Like you I have tremors. Mine are intentional tremors unlike Parkinson's which is a resting tremor. The most bothersome to me is the orthostatic tremor that happens when I go from a sitting position to a standing position. It will happen out of the blue. The thighs become rigid to the point that I have no control of my legs and I am like the energizer bunny slightly moving around until someone can help me off of my feet.

Just like you I have had enough axonal destruction to cause muscle atrophy. Just above each hip I have huge dents. Both calves and both upper arms now have indentations also.

Researchers are trying to figure out ways to regenerate badly damaged nerves. At John Hopkins they are try Plamapheresis on some patients. So far the effect is only temporary and there are still residual effects. In the lab they are working on stem cell research on small animals. Their large animal study won't even start for a couple more years. I am not giving up hope but right now there is no sure fire answer for us.

Take care,
Lazylegs

 

[LBH]

You got that right

Hi! Pleasure to meet you also! Yeah that neuropathy stuff drives me nuts. It's the numbness and tingling stuff that irritates me. No matter what kind of medication they give me that seems to work for a while and then when I get these massive attacks they tear my body up. I have no feeling from my knees down. It feels like a dead piece of flesh! Sometimes I can walk okay and other times I can't. Feel the tremors all the time and in sitting positions along with other areas doing the tremors. I like watching my muscles spasm up. They just start shaking on there own in a relaxed position. I even feel the numbness and tingling in my head area and it feels like I am having a stroke. But no stroke is happening. Then my arm or leg will get the parylized feelings. That gets scary! I hate getting the twitching eyeball! It distorts my vision and makes my eye go nuts. Then to top it off the more severe the nerve damage, comes the weakness and the feeling sick feeling that you feel like you have cancer just eating your body away. It's a bad feeling along with being scary! Just wonder? If the nerve damage is motor sensory then I wonder if my organs inside my body are getting damage to. Organs have nerves too don't they? Doctors never mention that to me but there has got to be some kind of nerves in order for them to function. You have to excuse me today! I am having brain fog and thinking today is causing me problems! LOL! I feel like a doof ball today! :thumbs:

 

[lazylegs]

Hi Lynette,

Add me to the list. Lupus started for me with Mononeuritis Multiplex. It was fairly controllable for years. Three years ago everything went haywire. Despite treatment with Prednisone, Cell Cept and Rituxan the inflammation crossed the blood brain barrier and I developed reoccurring Transverse Myelitis. The neuropathy is from the bottom of the rib cage down. I also have cranial neuropathy.

Like you I have tremors. Mine are intentional tremors unlike Parkinson's which is a resting tremor. The most bothersome to me is the orthostatic tremor that happens when I go from a sitting position to a standing position. It will happen out of the blue. The thighs become rigid to the point that I have no control of my legs and I am like the energizer bunny slightly moving around until someone can help me off of my feet.

Just like you I have had enough axonal destruction to cause muscle atrophy. Just above each hip I have huge dents. Both calves and both upper arms now have indentations also.

Researchers are trying to figure out ways to regenerate badly damaged nerves. At John Hopkins they are try Plamapheresis on some patients. So far the effect is only temporary and there are still residual effects. In the lab they are working on stem cell research on small animals. Their large animal study won't even start for a couple more years. I am not giving up hope but right now there is no sure fire answer for us.

Take care,
Lazylegs

 

[lazylegs]

Yikes! I had another response written and thought I hit command copy since it took so long to write, but obviously I hit command paste instead. I am sure I won't remember everything I wanted to say but here it goes>

It must be very frustrating to have the tremors all the time. Do you take anything for the muscle spasms? When mine were real bad the doctor increased my calcium and added vitamin D to the mix. It really helped me.

Lupus can affect the other organs. Never really thought about the role the motor and sensory nerves would play. I know they affect the bowel and bladder. My neuro explained how many nerves it takes just to urinate and how they have to all work together.

Worrying just makes me feel worse so I concentrate on what I can do to slow the progression. Any other problems will be dealt with as they come.

Take care,
Lazylegs

 

[KarolH]

Anxiety Pills???????????????

Ummm, find a new doctor please.

I was taking Neurontin and was up to 2600 mg a day for Neuropathic Pain.

I built up a resistance and was switched to another drug.

There is a lot of drugs out there for your pain you just need to find a good doctor so you can get on one of them.

 

[Raglet]

depends which anxiety pills - some actually have a direct effect on pain, such as klonopin (clonazepam). Klonopin is an anti convulsant, like neurontin etc, and can be used for directly treating the pain of neuropathy, the same way that neurontin does. As I was already on two anti seizure medications for my epilepsy, my neurologist added in klonopin and it did help the pain when I was in a severe episode of neuropathic pain.

cheers

raglet