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Old 11-07-2010, 01:35 AM   #1
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neuropathic disease diagnosis

I have multiple symptoms: tingling crawly feeling (all over), itching, pins and needles, sharp stabbing pains, and tightness in my stomach, esphagus, lungs, bladder, kidneys, back muscles. I have low vitamin levels and have been getting treatment for awhile but with no improvement with these symptoms. I was evaluated for MS (brain MRI) about 8 years ago I guess, my MRI was normal. I have an autoimmune disease but I am not aware that it causes neuropathic problems. If you have nerve disease, how do you get a diagnosis?

 
Old 11-07-2010, 04:09 AM   #2
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Re: neuropathic disease diagnosis

I am going to a Neurologist--first was there for a spinal disorder and sent to a neurosuregeon for a surgery as a disc was compressing a nerve and now he suspects neuropathy also.

He is doing Nerve Conduction Testing on me, an upcoming EMG (recording of electrical activity in muscles), and some other test later this month that I forget what exactly it is. They also do a little exam in the office to see if you can feel this, is this feeling here less than there, etc. Also, check your reflexes and strength.

I have horrible nerve pain and many of the symptoms you described, with 2 auto-immune diseases as well.

Neurologist told me auto-immune diseases can contribute to having nerve disorders.

Have you gone to a Neurologist? I would suggest this.
Mine gave me a non-narcotic med for the pain, also.

Hang in there, I know how horrible it is..........

 
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Old 11-07-2010, 08:54 AM   #3
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Re: neuropathic disease diagnosis

Can your spine cause all over tingling like that? I have the most horrid spinal pain and I haven't had an MRI done. I've heard if your B-12 is low long enough, it can cause nerve disease. I don't know how long I've been deficiant though. Haven't seen a neurologist for that stuff since like 8 years ago. He put me on neurontin. It cleared up for awhile. Right now it's worse than it's ever been. I've been to different neuro's. One for migranes, one was my sleep doctor, and the other was over my pain, and he told me myofacial, but it's autoimmune. I wonder too if I'd stop taking prescription medication, if this nonsense would let up, but I cannot do that.

 
Old 11-07-2010, 10:06 AM   #4
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Re: neuropathic disease diagnosis

Unfortunately, spinal problems can give alot of different symptoms--as well as disc symptoms.

I got bad nerve damage in my left arm from the disc compressing a nerve (oops said that) and it was shooting pain and numbness all the way down my arm from my neck. Tingling, numbness, all that stuff.

Plus if you have arthritis in your spine it can cause alot of pain. I have alot of arthritis in my neck and have been referred to a rheumatologist to see what kind of arthritis is in my spine.

You're right, auto-immune problems cause nerve damage also. I am going to a hematologist tomorrow to see if I have any other auto-immune diseases that is causing this suspected neuropathy (won't know if I have it until all tests are complete).

My neurologist gave me the neurotin (I got generic form--gabapentin) the other day for the nerve stuff and it hasn't helped yet, but I am hoping it will as he said it takes awhile to get up to the full dose.

I would advise you to get an appointment with the Neurologist--have him send you for an MRI to see what's going on. Also, have him do some blood work--mine just took blood for Rheumatoid Arthritis, Lupus, Lyme Disease, some other stuff I forgot. He said these are all auto-immune problems that can contribute to nerve disorders. Also, alot of auto-immune problems mimic eachother with symptoms so you need to know what you have, I guess.

It's kind of like a puzzle, to figure out exactly what's causing what when you have a few things going on like you do. I am sorry you are in so much pain.
Hope the little info I can give can be of use. When I find out more from these docs, I can try to pass on a little more info........


 
Old 11-08-2010, 04:23 PM   #5
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Re: neuropathic disease diagnosis

Do you mind revealing what your auto-immune disease is? Without a doubt, many of them can and do affect nerve function, and even some of the medications for these disease have neuro-toxicity or neurolytic properties.

A number of vitamin deficiencies can also result in painful or otherwise uncomfortable neuropathy, as can other systemic diseases. Diabetic Neuropathy is perhaps the best-known such condition.

MRIs, CTs, and other imaging modalities have limited resolution, and unfortunately miss many instances where trauma or defect in a nerve or surrounding tissue is simply too small to be detected. It only takes a very small neurological defect or trauma to cause tremendous pain, tingling, crawling sensations, or numerous other symptoms. Imaging tests are good for baseline measurements at the very least, but may never detect minute trauma or defect.

An EMG may show problems in peripheral nerves, but if your problem is confined to the central nervous system (brain and spinal column) the test is of little use.

The bottom line is that if a structural anomaly is detected, it should be treated surgically only if the outcome is worth the risk. Many back-pain and neck-pain sufferers have had spinal surgeries that fixed one problem but created something else - sometimes even more painful. If the risk of surgery is too great, or if no operable condition is detected, it is almost certain that you will be treated based on your descriptions of your symptoms. It is therefore critical that you communicate as effectively as possible with your physicians. All too often doctors hear what they expect to hear based on trying to fit your complaints to a disease or syndrome with which they are most familiar. In many cases, patients don't say anything because they are afraid of upsetting the doctor, and they live in pain or discomfort far worse than they should have to tolerate. I recommend that you do as much research online about neuropathy and neuralgia. You may find terms to describe your symptoms that are even better than what you've been using, and that can help your care providers treat you more effectively.

Neuropathy is a terrible condition to have to endure. I've been dealing with it for over thirty years - in many cases seeing doctors who were not willing to accept that neuropathy was my problem, even when faced with the surgical reports of my nerve tumor excisions and nerve sectioning/resectioning! Doctors can be quite the ornery bunch!

Best of luck,

Jeff

Quote:
Originally Posted by beatlebug View Post
I have multiple symptoms: tingling crawly feeling (all over), itching, pins and needles, sharp stabbing pains, and tightness in my stomach, esphagus, lungs, bladder, kidneys, back muscles. I have low vitamin levels and have been getting treatment for awhile but with no improvement with these symptoms. I was evaluated for MS (brain MRI) about 8 years ago I guess, my MRI was normal. I have an autoimmune disease but I am not aware that it causes neuropathic problems. If you have nerve disease, how do you get a diagnosis?

 
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Old 11-08-2010, 07:52 PM   #6
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Re: neuropathic disease diagnosis

What all will an EMG show? My tingling, the shooting pain, it's unbelievable right now. I can't help but wonder if maybe it's a long term bad reaction to a medication I take.

Last edited by beatlebug; 11-17-2010 at 07:45 AM.

 
Old 11-18-2010, 09:53 AM   #7
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Re: neuropathic disease diagnosis

I've wondered the same thing about medications, especially when new symptoms would appear after starting something. I think it was my way of trying to rationalize my pain....give it a reason. I was recently diagnosed with Small Fiber Neuropathy and still have questions about why.... but the cause of my pain is now known. Have you had any autonomic reflex testing? SFN doesn't show up on the standard nerve conduction tests.

 
Old 05-09-2011, 03:06 PM   #8
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Re: neuropathic disease diagnosis

Hi would you say a neurologist is the best first stop? Just looking for a personal opinion.

 
Old 05-10-2011, 02:39 PM   #9
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Re: neuropathic disease diagnosis

An internest or primary care physician is usually the first doctor people see for pain, loss of function, or most other problems. A neurologist is almost always a referral, but can be your starting point if you have good reason to believe you have nerve damage or neurological deficit of any kind.

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Hi would you say a neurologist is the best first stop? Just looking for a personal opinion.

 
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Old 05-10-2011, 05:50 PM   #10
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Re: neuropathic disease diagnosis

Thanks for responding. Did pcp got foot doc said most likely PN but he could not help. Gave numbing cream said could helP in 7-10days. Going back to PCP and want to insist on neurologist that can do right test. PCP is good about referrals. Think I will ask for specialist in Boston. Read about nerve test, possible MRI to check whole spine. Am almost 100%sure about PN but not sure why. Also read of diabetes test 3hrs after food. Since have had few back injuries and neck stuff suspect I should get as many checks as possible. Pain beginning to keep me awake and limit my walking. Think I will check the B vitatim issues. Grateful to have learned sO much on these posts! Will check in again as I get some help. Peace.

 
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