question about neuropathy

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cutiepie132
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Date Joined Jul 2011
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   Posted 7/4/2011 6:54 AM (GMT -6)   
I was wondering what happens with neuropathy? Will it get worse, affect your ability to use your muscles or walk? What is the worst case senerio? Right now, I am having tingling, prickling, and shock sensations constantly. Neurontin is keeping the pain from this calm. Have any of you guys had any luck with a medication for the neuropathy? I have also experienced muscle weekness but plaquenil is keeping that calm.

Gretchen1
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   Posted 7/5/2011 10:39 AM (GMT -6)   
Hey Cutiepie

Do you have lupus? That seems like it could be a cause. Do you have an MS diagnosis?

Nerve pain and abnormal sensations are very difficult to treat. I have neuropathy but it is usually just weird icy/hot sensations on my lower legs. I don't often have pain and it doesn't at all interfere with walking. I am not sure if I have shock sensations. I get buzzing in my left leg.......not painful, just odd. I get brief stabbing pains but those happen to lots of people; who knows what causes that.

I have heard that some find releif with cymbalta. Make sure you are getting enough D3 and have that tested from time to time to check. My nerve junk goes way up if I slack off from taking D3.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

cutiepie132
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Date Joined Jul 2011
Total Posts : 43
   Posted 7/6/2011 10:07 AM (GMT -6)   
I think I have Lupus but the official diagnosis hasn't been made yet, well except for many years ago, I had it diagnosed, but we get to do it all over again. I'm waiting for an MRI on my brain so I don't know about the MS yet. My doctor wants to do a nerve conduction study. Will that do any good if the neuropathy is coming from my autoimmune disease? I think he wants to look for a pinched nerve or such, but I don't think I have any pinched nerves.

Gretchen1
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Total Posts : 3571
   Posted 7/6/2011 12:58 PM (GMT -6)   
Nerve conduction is for pinched nerves or peripheral nerve issues. It's not used when MS is suspected. The test for central nervous system damage is "evoked potentials".

Is this a second opinion on the lupus diagnosis? Why all over again? Neuropathy is difficult to treat regardless of the cause. Be aggressive about symptom management with your doctors.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

cutiepie132
Regular Member


Date Joined Jul 2011
Total Posts : 43
   Posted 7/6/2011 2:06 PM (GMT -6)   
Because the diagnosis was taken from me, not by my rheumatologist, but another doctor. I cannot see him anymore because he doesn't take my insurance. I am getting an MRI on my brain to check for MS. If I have something that's attacking my peripheral nerves, like if it was Lupus, would this test confirm to my doctors that I have nerve pain and sensations. I've had weekness but I've had no loss of muscle strength, I just don't see what this test is going to provide except a big fat negative result, and I am tired of having useless tests done. If it could confirm that it's peripheral neuropathy instead of central, then great, but if it can't confirm anything, because I haven't lost any muscle strength, then I'm not interested. I have heard how painful this test is. Not exactly something to look forward to. My doctor said they can only keep the nerve pain under control, not the sensations. I wanted to screem when he told me that. Difficult to treat, that really sucks.

cutiepie132
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Date Joined Jul 2011
Total Posts : 43
   Posted 7/6/2011 2:21 PM (GMT -6)   
I've heard the needles are painful, that's an EMG isn't it? I'm not sure if that is being done too, he just said Nerve conduction study.

Gretchen1
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Date Joined Jan 2007
Total Posts : 3571
   Posted 7/6/2011 2:51 PM (GMT -6)   
I am not sure about the needles. The evoked potentials test was painless. Some skin level mild shock sensations, but not painful. Thats for the extremeties portion. There is also a hearing portion and a vision portion; both of those are totally painless.

I have chronic nerve sensation; icy/hot, wet, creepy crawlies etc. I have gotten used to them and don't really pay much attention to them until they upgrade to pain. Luckily, that doesn't happen more than once or twice a week in the evenings.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

cutiepie132
Regular Member


Date Joined Jul 2011
Total Posts : 43
   Posted 7/6/2011 3:00 PM (GMT -6)   
I know it's not just annoying sensations, you can hurt like hell. Are you on any medications for it at all? I did an oatmeal bath yesterday and had relief up until about an hour ago.

Gretchen1
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Date Joined Jan 2007
Total Posts : 3571
   Posted 7/6/2011 9:00 PM (GMT -6)   
I take klonopin as needed on nights where pain is gonna keep me from sleeping. I don't take anything else. I am afraid of the side effects of neurontin or lyrica. I've never found anything topical that helps. I'm glad the bath helped.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

cutiepie132
Regular Member


Date Joined Jul 2011
Total Posts : 43
   Posted 7/7/2011 5:56 AM (GMT -6)   
I don't blame you really, I wish I could have myself free of taking medications, but I'm not that tough. I rely on them for anything wrong. That's good that you have something that helps you sleep. I still find it difficult even with taking a high dose of neurontin at bedtime. I guess that's because I get the sensation of you gotta go, gotta go from my stupid dumb bladder!

Gretchen1
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Date Joined Jan 2007
Total Posts : 3571
   Posted 7/7/2011 6:51 PM (GMT -6)   
I have the opposite problem. I have retention issues. I know I gotta go but can't.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

cutiepie132
Regular Member


Date Joined Jul 2011
Total Posts : 43
   Posted 7/7/2011 7:15 PM (GMT -6)   
I have had that too in the past. Did you find out the cause? Do you by any chance know if it's a normal part of blood work to have an ESR test done when looking for causes of neuropathy? That blood test isn't going to show acute inflammation of the nerves is it, or is it?  

Gretchen1
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Date Joined Jan 2007
Total Posts : 3571
   Posted 7/7/2011 11:53 PM (GMT -6)   
The cause of my bladder issues is my MS. I have a low spinal lesion and it has caused neurogenic bladder problems. I have to be ever vigilant for UTIs.

I have never heard of the ESR blood test. I don't know anything about it.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

cutiepie132
Regular Member


Date Joined Jul 2011
Total Posts : 43
   Posted 7/8/2011 4:03 PM (GMT -6)   
An ESR blood test checks for inflammation, they use this when determining autoimmune diseases, so I don't understand why he chose that test when looking for issues with neuropathy. Unless he feels like an autoimmune disease could be the issue, and if he did feel that way, it would have been nice if he had shared that with me. I found out I'm getting the EMG test done next week.

Post Edited (cutiepie132) : 7/8/2011 4:22:16 PM (GMT-6)


Gretchen1
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Date Joined Jan 2007
Total Posts : 3571
   Posted 7/8/2011 7:06 PM (GMT -6)   
I'm thinking he's not considering MS. EMG is not a typical test used in either ruling in or ruling out MS.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

cutiepie132
Regular Member


Date Joined Jul 2011
Total Posts : 43
   Posted 7/9/2011 9:46 AM (GMT -6)   
He's looking for a pinched nerve just as a possible cause but he said "just as I thought" that a pinched nerve would not cause all over neuropathy. He also did some blood work to look for possible causes. My neurologist is thinking it could be MS since I have had past attacks. With a positive ANA, he thinks it could more likely be due to Lupus, but he's still doing an MRI on my brain. He has also suggested doing a spinal tap, which I might end up having done, because my insurance has yet to approve the MRI. This attack is the worst yet and it will not go away. I want to know why I have the neuropathy, so whatever tests they want to do, I guess is okay with me. Should I stop certain medications before I have the test done? I read online that you should stop anything that affects your nervous system 3-6 days before the test. I'm not sure which one's that would be except neurontin. How about my muscle relaxant or plaquenil? The plaquenil stops the weekness the neuropathy is causing.
 
 
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