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Old 12-04-2011, 07:56 AM   #1
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Is it possible to find out why you have neuropathy?

With the appropriate tests, can you find out why you have neuropathy?

I'm wondering if what I have is really even neuropathy, considering I have no loss of sensation anywhere, or loss of strength (other than generalized muscle weakness). That weakness is not apparent on a physical exam, just when I attempt to exercise or an overall feeling I get.

Tingling, *****ling, pins and needles, shooting pains, spasms, twitching, burning,, what am I forgetting, I don't know?? lol..

The tingling is all over, and it's constant. It affects my bladder, to how often I urinate.

My insurance doesn't want to approve an MRI to see if it's central. I have had an EMG and some blood work that was all normal.

Would a nerve biopsy help in the diagnosis? What would be the chance it would show the problem?

Can your arteries cause neuropathy? I just find it weird, that I feel sharp stabbing pains from my pulse thomping, or I have twiching from my pulse pounding so hard, just wonder if something might be going on there my doctors have overlooked.

 
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Old 12-08-2011, 06:21 PM   #2
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Re: Is it possible to find out why you have neuropathy?

Are you on any medication because certain medications can cause these signs? If you are, I suggest that you have your blood levels done to see if you have the correct amount of the drug in your system and I speak from experience.

 
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Old 12-09-2011, 08:03 AM   #3
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Re: Is it possible to find out why you have neuropathy?

Have you seen a Neurologist? Who diagnosed you with Neuropathy?

I have had a right ankle nerve biopsy...it can prove why you have Neuropathy in some people just as a spinal tap can...I had both of those done and was not one of those lucky people. I've had PN since 07, sadly it is idiopathic.

Hope you find the answers you are looking for.
J

Last edited by RisingParrot; 12-09-2011 at 08:04 AM.

 
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Old 12-09-2011, 03:11 PM   #4
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Re: Is it possible to find out why you have neuropathy?

Quote:
Originally Posted by danabarb View Post
Are you on any medication because certain medications can cause these signs? If you are, I suggest that you have your blood levels done to see if you have the correct amount of the drug in your system and I speak from experience.
The very first time this ever happened to me, I think it was from a drug reaction and neurontin cleared it up. Now neurontin doesn't touch it, but it helps my pain to some degree and it helps me sleep, at least. I tried stopping all of my medications, and all I did was sleep 20-22 hours a day. So now I take neurontin at bedtime and plaquenil every 2 days, that cannot be doing this to me. I have chronic fatigue from having a connective tissue disorder, and why it wants to make me sleep that freeking long, and I can't function unless I take a prescription medication, namely those two. I want to know what's wrong, and I'm so tired of having the type of problems that I do, and not having any answers. The neuropathy is just sensations and pain, and sometimes I feel like my insides are on fire, but that stupid tingling drives me up the wall. I'm sick of it. My neuro thinks it might be MS but I've had no tests to confirm it.

 
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Old 12-09-2011, 03:14 PM   #5
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Re: Is it possible to find out why you have neuropathy?

Quote:
Originally Posted by RisingParrot View Post
Have you seen a Neurologist? Who diagnosed you with Neuropathy?

I have had a right ankle nerve biopsy...it can prove why you have Neuropathy in some people just as a spinal tap can...I had both of those done and was not one of those lucky people. I've had PN since 07, sadly it is idiopathic.

Hope you find the answers you are looking for.
J
Sorry you had that struggle to find out what was wrong. What does idiopathic mean, that it is secondary to another cause?

 
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Old 12-09-2011, 07:32 PM   #6
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Re: Is it possible to find out why you have neuropathy?

yes when they do that emg test it will tell you if you have neuropathy. i took the test and i hve phriephal neuropathy in the left ankle. a table fell on my ankle . i been having this problem going on 5years in April. and it is painful.

 
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Old 12-09-2011, 07:50 PM   #7
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Re: Is it possible to find out why you have neuropathy?

Are you saying if an EMG doesn't pick it up, it's not neuropathy?

My doctor said that was mainly to detect pinched nerves.

What if my nerves are being attacked by inflammation?

How in the world could I not have neuropathy when my body tingles from head to toe. I burn like I'm on fire. I have shooting pains. Twitches. Muscle spasms. *****ling/pins and needles... It even affects my bladder function. Heat makes it way worse..

Something is wrong there. I have to feel this crap 24 hours a day now.

 
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Old 12-10-2011, 06:11 AM   #8
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Re: Is it possible to find out why you have neuropathy?

I have the same problem but the only thijng as long as i keep my feet warm mine doens't hurt some time it get inflamed to the point that i can't even stand any thing to touch my foot. when i took the emg it showed that i had bad nerve damage in the left ankle and my doctor tome that i had neroupath. i also was told when the foot is inflammed it triggers the muscle and it makes me have spams because the foot is inflammed. my doctor order a spiecial creams for my ankle it cream that is special made by pharmecy also have a spinalcord stimulator. Everybody pain is diffrent some times it fill like you have blisters on your feet. i fill the pain you are going threw. If its nerve damage my doctor some time they heal some time it don't. it also can spread to other parts of your body. sorry you are in pain

 
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Old 12-10-2011, 06:23 PM   #9
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Re: Is it possible to find out why you have neuropathy?

Hi Never Again - Sorry to hear about your pain and search for answers. I don't know anything about connective tissue disorders or how that might relate to your symptoms, but from your description of your symptoms, it sounds to me like you may have small fiber neuropathy (SFN). This type of neuropathy is less common, and it doesn't show up on an EMG test. SFN also can affect all parts of your body, including your bladder, heart, intestines, etc., because it affects involuntary muscles.

Many neurologists aren't familiar with SFN, so if yours isn't, find another who can treat your symptoms better and explain issues to you.

Your neurologist should have done a gabillion tests to see if he can determine the cause of your neuropathy. If after doing all this testing a cause can't be found, then your neuropathy would be labeled "idiopathic," meaning medical science doesn't know the cause.

I haven't heard of plaquenil for treating neuropathy, but neurotin is commonly used, even as high as 3600 mg a day, so you may find relief by increasing your dosage of neurotin. Also, there are many, many other meds that help with neuropathic pain. Cymbalta is an antidepressant but is also effective for neuropathic pain aside from whether a person is depressed or not. I have had great success with Cymbalta and have heard of others who were equally helped. Another med that I hear tauted as effective is Tramadol. A good neurologist should work with you to find the most effective combination of drugs that does the most for you as an individual.

Good luck to you in finding more effective treatment. - Ruby

 
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Old 12-10-2011, 10:19 PM   #10
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Re: Is it possible to find out why you have neuropathy?

Hi nerveragain!
I am so sorry that you are having so much pain! Those symptoms you have are exactly what drove me to my dr, who then sent me to 2 neurologists that finally made the diagnosis of SFN. I have all of the same burning, electric like shocks, tingling, vibrating, on fire feelings that you have,and they have nearly driven me mad for 6 going on 7 years now. The second neuro was so sure that I had small fiber neuropathy, that she felt doing the punch biopsy which had to be sent from Canada where I live, to the States for positive diagnosis, was so sure to come back positive for SFN, that she didn't bother to do the test. She feels that the SFN goes hand in hand with my diagnosis of Rheumatoid arthritis and that it as all auto immune.
I have been through almost every medications, anti-depressant, gabapentin, anti-seizure meds, vitamin B12 injections, in other words, we tried much. Some gave terrible side effects and some made no difference what so ever.
I borrowed the description of what was happening to me from another SFN sufferer and this is what mine feels like- some one crushed my toes, broke both of my ankles, poured acid on my feet and legs and lit them on fire!!! 24 hours a day/7 days a week but most definitely worse at night. It takes me 2 hours in the morning before I can even put weight on my feet to walk from the bed to the couch.
It has progressed up to my thighs now.
So many people have tried so many therapies and medications and I always come to check out this site in case someone has found something that helped them
So far the only thing that has really helped me is the sleeping pill I finally demanded so that I could have 4 - 5 hours of uninterrupted sleep by pain, which I wasn't getting, and made my life so much worse without sleep.
I try to keep my feet warm too, try not to stand too long or sit too long but always get some kind of a walk in. I take warm baths,and an opioid painkiller, which has completely lost it's ability to smother the pain at all.
Ruby is so right- a good neuro will work with you to see if they can discover a cause. Like mine being auto immune, yours may have a completely different cause. Sometimes they can link it up and sometimes there isn't a clearcut culprit.
I pray that you will find some relief soon.
Please let us know how you are doing! Together maybe we can all find bits of knowledge that will work for us!
Best wishes!!
Daisy

 
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Old 12-12-2011, 06:58 AM   #11
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Re: Is it possible to find out why you have neuropathy?

I just love you all. You talk and talk to me anytime I need it.. I appreciate you giving up your own time to do so. It's very helpful.

Lisa, I don't think I have nerve damage, such as any loss of feeling or whatever, I know I don't have, but I don't understand why my nerves are acting so crazy with these sensations.

Ruby, I learned what idiopathic meant in school this week, lol.. But thank you. I don't take plaquenil for this particular problem, I am taking neurontin. I cannot go up on the dosage for all I would do is sleep and I have fatigue really bad as is. Neurontin only controls the pain anyways, it doesn't do anything for the sensations which is most of my problem. I have already tried cymbalta and that was a very short trial. It was horrible with side effects.

Daisy, I'm sorry. That sounds like that would really hurt. That reminds me of my spinal pain. It's nasty pain!

I think the first thing I will do is ask my neuro for a beta blocker, calm my pulse down, and see if it makes any difference, if not, I am going to tell him to do the spinal tap to see if I could have MS. I will have to do some reading on SFN for I don't know much about it.

I'm not at all willing to be told this is idiopathic for even if they can't figure it out, doesn't mean a cause isn't there. Tired of my health problems going down that path. They never do enough to really see for sure what is wrong. They just let it go. My neuro will help me however, he is an awesome doctor.. So nice, always wants to just see me feel better.

 
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Old 01-05-2012, 03:27 AM   #12
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Re: Is it possible to find out why you have neuropathy?

Well it's become obvious the tingling is coming from my pulse. I feel it right over top of my pulse tingling now in multiple areas. I guess that would explain why it's widespread and why I don't have any nerve damage symptoms like loss of feeling anywhere.

Coronary artery disease is hereditary in my family. (((

Nice to finally know what's causing this.. lol..

 
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