Peripheral neuropathy/mononeuritis multiplex/nerve study

[ScreaminMeanie]

Anyone had a nerve study done for this?

I'm having one done Jan. 4th, and I'd like to know what it's going to be like! Also, what did your results show? Have you gotten better since the study was done?

[Jack]

I had a nerve study on my legs and it consisted of the usual tapping with hammers and then a lot of electrical tests many of which were in the form of small electric shocks. Not that pleasant, but nothing very serious to be concerned about. Apparently the next step would have been to take nerve biopsies, but since my results up to that stage were all fairly normal they decided that it was not justified. This was all done in an attempt to find some other reason for the pain and muscle wastage in my feet and legs.

[ScreaminMeanie]

Was that prior to your DX w/WG? And was it the WG causing the problems? I know you've probably told all this before, but I haven't been around here very long. Thanks for taking the time to answer my questions!

[drz]

Anyone had a nerve study done for this?

I'm having one done Jan. 4th, and I'd like to know what it's going to be like! Also, what did your results show? Have you gotten better since the study was done?

I have had it done twice. They used needles insert into nerves and then measure the amount of current it takes to activate them. They can tell if your motor nerves and sensory nerves are impaired or dying. This is what I learned from the tests. I was surprised to find out my motor nerves were more impaired than my sensory nerves since I already have considerable numbness in my feet. The stimulation from the testing resulted in some short improvement in my neuropathy and there was some research being done on using a form of this electric stimulation as a treatment modality but I don't know the latest on this. The procedure took awhile and I was glad when it was over. Neuropathy tends to get worse over time unless it due to some temporary problem.

[Jack]

Although a lot of people here have nerve involvement, my problems are assumed to be due to long term steroid use. This can cause muscle atrophy and tendon problems, but foot pain is a symptom that seems to be very common with Wegener's although it is not documented on the medical sites. The nerve study was just to rule out another possibility.

[jola57]

My test was done before the dx and to confirm wegs I had the Sural nerve biopsy, on the left side of my foot by the anckle. It is not pleasant but not a biggie either.

[Thakator]

Hi,
Don't know if it was the same test as yours is to be, but mine was an electro-conductivity test which was ordered because of a strong suspicion of peripheral neuropathy. The test itself was as Jack described. Also like him, my major feet muscles had atrophied - - nearly to the point of non-existance. The test confirmed a severe case of PN,effecting both motor and sensory nerves. Specifically: demyelinating, polyclonal neurapathy which (according to my neurologist) is the varient customarily seen in PN which has been caused by an autoimmune problem. He also says that the leading cause of PN is diabetes, followed by a B-12 deficiency, then injury; if neither of these are present, then an AI issue is the likely culprit. And, sure enough, I have found Wegener's specifically listed as a cause of PN as I looked into it. He told me that he believed mine was most likely the result of Wegs inasmuch as I had no injury, have plenty of B-12 in my system, am not diabetic and - - just for good measure - - I have that old positive ANCA stuff that so many of us share.
So, yes, if you have PN it could be Wegs induced but the test for it won't be too bad; nnot pleasant, but not too bad. And, according to this doc, if it is from Wegs, then there is a chance that you could regain some lost ability once it is controlled and kept at bay long enough. Of course, he also said that the PN could worsen because of the treatment side effects. Sounds like a typical Wegs scenario. Good luck with your test and with the results. Ron

[ScreaminMeanie]

Ron, what you had done sounds like what my doctor described to me. I've already been confirmed with peripheral neuropathy, due to the foot drop I experienced (just the right foot). That part of it, thankfully, went away, but I still have disturbing numbness in that foot pretty much all the time, and pain occasionally (although the numbness seems to improve a bit after the pain resolves). Because the numbness is not completely gone (it's my only remaining "active" WG symptom), the doc wants to check to see if it's damage from the PN causing the numbness, or if there's still an inflammatory process going on. If it's damage and not inflammation, then we'll know we're getting the WG under control.

[Hal]

I too have had it done twice by the Neurologist. DRZ's comments in Post #4 are actually quite similar to what I would write. I have severe nerve involement in my legs and feet, resulting total lack of sensation on the bottom/sides of one foot and partial loss in the other foot. What my tests showed was several damaged and dead motor nerves in my legs contributing to the loss of sensation. The tests are interesting actually because they showed that the nerve impulses in my legs, for the nerves that are still working, are travelling not-at-full speed. During the test the technician listens to the nerves on a speaker, so you can actually hear your nerve impules as he moved the needle.

It does not hurt as such, you will feel little jolts of electricity, depending on where the probes or needles are placed. They usually start with the juice on "low" and increase it as necessary at each location to get the results. One thing to watch out for though (big smile) make sure they move they reset the power back to "low" each time they move the probe. During my first test, they had the probe on the bottom of my foot where it is totally dead, and had the power on "highest you can get" ... they kept asking me if I could feel it and I kept replying "nope". They forgot to move the dial back to "low" when they then moved the probe to another part of my foot, that has undamaged nerves. Let me tell you, that resulted in a jolt I could feel with my leg jumping about a foot off the table... resulting in an "Ooops ... sorry about that" from he technician ... ha ha ha!

I have no idea when my nerves will grow back. The Neurologist said they "should" "over time" of perhaps "2-3 years" ... really no guarantees there as each person is different.

Good luck!

[freakyschizogirl]

Sorry i'm about to wade in and ask a silly question....Does this apply to people with Neuralgia too?? Cos i've had it for well over a year, if not 2 now and wondered what was the cause and if it will ever go away. Not happy masking it will drugs forever.

[Thakator]

Not a silly question considering that we need to be on guard for just about anything - - but I, for one, don't know the answer. Hopefully someone else on here can and will help you. Merry Christmas, Ron

[Sangye]

This answers your questions. Nerve Pain - Neuralgia - Causes - Symptoms - Diagnosis - Treatment - Pain Relief (http://arthritis.about.com/od/nervepain/Nerve_Pain_Causes_Symptoms_Diagnosis_Treatment_Pai n_Relief.htm)

If you're having chronic pain you can get relief using a TENS unit at home, like the ones used in PT clinics. Home units are relatively inexpensive ($100 or less). You can leave a TENS unit on as long as you want, and they help you avoid painkillers altogether or limit how much you need.

[freakyschizogirl]

Cool thanks Sangye...i'll have to look into it in the new year!

[Jaha]

Hi,

I had the nerve conduction test probably at least 10years before being dx with WG. The results were that I have tumors on the nerves on my toes and fingers. I had a hand surgery to remove some tumors off my fingers probably seven or eight yrs. ago. I now suspect that it is all related to having this disease or condition,(call it one or the other depending on the day). The tests are uncomfortable but no more than dealing with the pain of WG, you may not even notice the difference. Wishing you the best!

Jana

[ScreaminMeanie]

Had the nerve study today (they called me last week to change the appointment from 1/4 to 1/3). It wasn't bad. There were definitely some shocking moments ;) but it really wasn't painful. My right leg is pretty sore now from the knee down, but nothing horrible.

The outcome? No motor nerve damage, but definitely no sensory nerve response for the top of my right foot, even compared to my left foot. Some weakness in my right foot, but I still have full range of motion. The partial numbness is really annoying, but it's better than the severe pain I had before I started on the MTX. *shrug* All we can do now is wait (at least a year) to see if the sensory nerve regenerates itself.

[drz]

Had the nerve study today (they called me last week to change the appointment from 1/4 to 1/3). It wasn't bad. There were definitely some shocking moments ;) but it really wasn't painful. My right leg is pretty sore now from the knee down, but nothing horrible.

The outcome? No motor nerve damage, but definitely no sensory nerve response for the top of my right foot, even compared to my left foot. Some weakness in my right foot, but I still have full range of motion. The partial numbness is really annoying, but it's better than the severe pain I had before I started on the MTX. *shrug* All we can do now is wait (at least a year) to see if the sensory nerve regenerates itself.

Shocking moments is right--(smile) but they save the best ones for last, don't they?

[ScreaminMeanie]

If you mean the one at the back of the knee, absolutely!!! The other spots weren't even particularly disturbing, but the back of the knee definitely got me clutching the table with both hands!