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Razzleberry
05-09-2008, 10:49 AM
Can someone give me the short version of neuropathy ...the whys and wherefores? This is very new to me and I don't even know what to ask.

Some questions that come to mind...
Is this drug related?
Reversible?
Progressive?

Thanks a bunch and it is so nice to have this forum back!

Saysusie
05-09-2008, 11:56 AM
Peripheral neuropathy is a term used to describe disorders of your peripheral nervous system. Your peripheral nervous system includes nerves in your face, arms, legs, torso, and some nerves in your skull. All of your nerves not located in your central nervous system (which includes the brain and the spinal cord) are peripheral nerves. Neuropathies may affect just one nerve (mononeuropathy) or several nerves (polyneuropathy). Your nerves provide communication between your brain and your muscles, skin, internal organs and blood vessels. When damaged (as can happen with Lupus), your nerves can't communicate properly, and that miscommunication causes symptoms such as pain or numbness.
Peripheral neuropathy often affects people with diabetes and autoimmune diseases, such as rheumatoid arthritis and lupus. Certain vitamin deficiencies, some medications and alcoholism can also damage peripheral nerves.
Neurological symptoms may occur related to your central nervous system, which consists of your brain and spinal cord, or your peripheral nervous system, which links your spinal cord and brain to all other parts of your body. The extensive network of peripheral nerves includes the motor nerves, which help your muscles contract, and the sensory nerves, which allow you to feel a range of sensations. In addition, your peripheral nerves help control some of the involuntary functions of the autonomic nervous system, which regulates your internal organs, sweat glands and blood pressure. Your symptoms will depend on the cause of your neuropathy and on which nerve or nerves are involved.
If a sensory nerve is damaged, you'r symptoms might be: Pain, numbness, Tingling, Muscle weakness, Burning, and Loss of feeling
You may have a tingling sensation or numbness that starts in your toes or the balls of your feet and spreads upward. Tingling might also begin in your hands and extend up your arms. In some cases, your skin may become so sensitive that the slightest touch is painful. You may also have numbness, or even a complete lack of feeling, in your hands or feet.
Your symptoms can be constant, especially at night when they can become almost unbearable.
If your motor nerves are affected, you may have weakness or paralysis of the muscles controlled by those nerves. And if you have damage to nerves that control certain functions of the autonomic nervous system, you might have bowel or bladder problems, reduced sweating or impotence. You might also experience a sharp fall in your blood pressure when you stand up, which may cause you to faint or feel lightheaded.
Neuropathies can be caused by several things, including Lupus (especially vasculitis caused by Lupus). When damage occurs to several nerves, the cause frequently is diabetes or another illness, such as Lupus, rheumatoid arthritis, kidney disease, liver disease and an underactive thyroid (hypothyroidism). Also, they can be caused by some toxic substances and certain medications (especially those used to treat cancer, like Methotrexate). You're more likely to develop peripheral neuropathy if you have an autoimmune disease, such as lupus or rheumatoid arthritis.
You may inherit a tendency to develop peripheral neuropathy also. Also, bacterial or viral infections can cause neuropathy. For example, an acute condition called Guillain-Barre syndrome frequently causes severe damage to all or part of your peripheral nerves by destroying the myelin sheath that covers nerve fibers. The myelin sheath acts as an insulator for your nerves and helps conduct nerve impulses. Although the exact cause of Guillain-Barre syndrome isn't known, most cases occur after an infection, surgery or immunization.
The goal of treatment is to manage the underlying condition causing your neuropathy and repair damage, as well as provide symptom relief. Therefore, treatment will be aimed at controlling your immune response. However, controlling a chronic condition, such as Lupus, may not eliminate your neuropathy, but it can play a key role in managing it. The best way to prevent and/or treat peripheral neuropathy is to carefully manage the medical condition that put you at risk or caused it.
Yes, neuropathy can be progressive. However, when it is, it is generally known as chronic inflammatory demyelinating polyneuropathy. The word "demyelinating" means a stripping of the insulation (myelin) around nerve fibers, which leads to substantial slowing of conduction velocity (as suggested by the EMG). High CSF protein is quite typical with CIDP. CSF protein is cerebrospinal fluid. To measure this, doctors use the CSF total protein test to determine the amount of protein in cerebrospinal fluid (CSF). CSF is a clear fluid that circulates in the space surrounding the spinal cord. An abnormal protein level in the CSF suggests that there is an abnormal process occurring in the central nervous system. CIDP does not appear to be your particular problem, however.
I hope that I've answered your question :lol: Please let me know if you need anything further.

Peace and Blessings
Saysusie

mnjodette
05-09-2008, 12:00 PM
Been there...yup.

Here's a good explanation via the Mayo Clinic.
http://www.mayoclinic.com/health/peripheral-neuropathy/DS00131/DSECTION=1

My neurologist (and rheumatologist) said this is not unusual in lupus (and also very common in Sjogrens, by the way.) It's often hands or feet - but mine is in my leg - thigh and knee. They often don't know exactly what causes neuropathy. Diabetics have problems with that frequently, but that's a bit different.

I had a nerve conduction test done to diagnose - an electromyography (EMG?) to see just what was happening. They did that twice before they figured out just what was wrong. (NOT a fun test....I must say. :cry: :cry: ) The neurologist called it a 'plexopathy' but often refers to it as a peripheral neuropathy. Likely cause is the inflammation brought on by SLE 'squeezing' off a blood vessel feeding a peripheral nerve in my lower back, affecting my leg. The end result was sudden onset of pain and numbness in my leg. (I mean SUDDEN....not there one minute, there big time the next.)

Doctors said it would probably improve over a year or two, but may never completely heal. That's about what's happened. It's almost two years now, and it's better, but my knee still feels like a hunk of dead wood much of the time, and I still have nerve pain. However, I'm not walking with a cane anymore, and I was able to give up my handicapped parking permit! That's progress!

Narcotic pain meds don't touch nerve pain. That's why they use anti-seizure meds like neurontin or lyrica. They also use anti depressants sometimes - I guess that has some positive affect on the pain.

So, that's all I know! (sorry...not very 'short!') A neurologist is the specialist you'll want to talk to about this.

I'm sorry you're going through this. It isn't life threatening, but it doesn't exactly enhance one's lifestyle either! My best to you, Mrs. Murdena.

Razzleberry
05-09-2008, 02:35 PM
Saysusie ...as always you come through with the best information out there. I'm copying it and taking it with me to the neurologist so I can ask the right questions. Thank you for taking the time to compile that for me. I truly appreciate it!

mnjodette ....I was taking the neurontin for sciatica but it didn't help at all. The rheumy said it helps with sleep too but didn't. All it did was make my head funny. It just seems like since the lupus Dx it's been one thing after another after another. It's frustrating but I'll stop bitching now and go copy out Saysusie's info.

Thanks guys :-)

Razzleberry
05-09-2008, 02:37 PM
"Biznich"???? What I said was the female dog with an "ing" on the end ....guess the language police didn't like that one. Hahahha Sorry!

Shyce
05-09-2008, 02:44 PM
i wish i saw this before, o well
i went to a neuro yesterday. need a brain mri, had already done a CT, but apparently still need further testing

Razzleberry
05-15-2008, 03:25 PM
So I had my neurology apt and EMG test yesterday. Came back as the nerves to the muscles are ok ....that is very good they tell me. The sensory nerves are the ones having trouble ...thus my ever increasing numb spots.

She is testing me for arsenic poisoning ...I ask hubby if he was poisoning me Hahahah ..but it could be heavy metals from well water she says. Time will tell.

Just thought I'd report in.

sits_inthe_corner
05-15-2008, 04:45 PM
Yikes Razzleberry

While I'm pleased for you about your nerves being okay I dont think I could relax untill I found the source of the arsenic.

Well water could be the culpet. It also naturally occurse in some foods like almonds, they have trace amounts. Are you having your water tested?

Saysusie
05-16-2008, 09:57 AM
eeks...arsenic poisoning! I'm with SITC, are you having your water tested? Oh my gosh! Keep us posted!

Peace and Blessings
Saysusie

Worried_Mommy
05-16-2008, 08:29 PM
Saysusie- Thank you so much for the very informative post. We are dealing with this right now, and I must say after dozens of questions to doctors, and dozens of hours googling, I have not heard or seen this described and explained this well anywhere else. Thank you for posting it.

sick n tired
05-17-2008, 06:38 AM
Arsenic poisoning????? Another reason for bottled water.


Biznich :lol: Razzleberry you are coming up with a new language. As a child in my church's small school, I used to try to come up with code for language and feel like I was tough stuff. I came up with calling someone a "fish turd" and that meant the same as the word that starts with bass and ends with turd. My teachers were smarter than I gave them credit and I ended up in big trouble for that one. :lol: :lol: :lol:

sits_inthe_corner
05-17-2008, 01:08 PM
sick n tired

You may want to rethink the whole "bottled" water thing....chemicals from the plastic leech into the water that you drink...just sayN :) hahahahaha

Sorry, I drive every one nuts. Just when you think you've something safe and pure to drink or eat, seems there's an article or a study to prove otherwise. :lol:

mnjodette
05-17-2008, 01:28 PM
We have well water and I worry about contaminants, too, sick n tired - arsenic...yikes! I sure hope your tests for that come out negative.

SITC, I thought the whole worrying about the plastic in bottled water was just another 'red herring' but now I'm reading it all over the place. They said look for the little recycling triangle on the bottom of the bottle (or jar) and if it's a 3, 6 or 7 (I think?!) then it MAY have the bad chemicals in it. (You see 7 in a lot of those Nalgene bottles that are so popular.) Supposed to look for bottles labed with a 5 on the bottom. It's not just bottled water - it's baby bottles, plastic baby food jars, anything in plastic. Who knew? :shock:

Jody

Razzleberry
05-17-2008, 02:53 PM
I highly doubt I have arsenic poisoning ...I mean really! Seems to me it just might be another random test that they do because they know not what else to do. Oh well I shall pee in a bottle for 24 hours and what will be will be.

Yes water in plastic bottles ...another thing to worry about. You can be darn sure something we eat, do, wear, consume is going to be bad for us somehow.

On that note I actually did give up all aspertame products and so did hubby and he has noticed a huge decrese in debilitating headaches. I can't say I see any difference in lupus symptoms but at least one of us is benefitting.

Saysusie
05-18-2008, 06:51 PM
Worried Mommy;
You are more than welcome! Keep us posted!

Saysusie

Razzleberry
06-03-2008, 05:05 PM
So I peed in a pot for 24 hours yesterday and took it in today. Do you have any idea how much pee you make in 24 hours!!!?? They tell me it takes 4 days or so to get the results so I'll keep you posted on whether or not I am poisoned :-)

Saysusie
06-05-2008, 02:36 PM
Yes, I have a bit of an idea how much pee we eliminate in 24 hours (or, at least how much I do) :lol:

Keep us posted!

Peace and Blessings
Saysusie