How were you diagnosed with neuropathy?

[mshistory]

I have a follow up appointment with my neurologist on Monday and I want to ask him if some of the pain I've been dealing with could be nerve pain. I thought peripheral neuropathy was limited to the hands and feet but I get these shooting, stabbing, pinching pains that start in my knees and radiate through my legs and I get the same thing in my arms. I occasionally get that pain in my neck and back too. It can get so bad in my legs I cannot stand 

I know a lot of you have PN, so does this sound like it to you and how were you dx? I just want some treatment to start working finally because so far, nothing has and it's beyond frustrating.

[Ark mom]

I have it, most likely, that is, as I have not been formally diagnosed.  My rheumy isn't very hung up on objective lab tests.  For example, I am sero-negative, but he is treating me without a salivary gland biopsy. 

With many diseases, PN is often length dependent and starts in the hands and feet; however, Sjogren's can be non-length dependent.  I have tingly and burning in my feet and hands.  I also have it in my left hip and groin!  Ugh, tingling and burning in the groin is awful. 

I am not bothering with neuro testing.  Soon I am going to start neurontin to help with the pain. 

I hope you get some answers and relief soon.

[Carolina]

Found by a neurologist.

I had been falling, found walking harder and harder and fell further and further behind everyone,  and I could no longer ride a bicycle, but didn't know why.

Confirmed with Nerve Conduction testing.

Elaine

[sarahjane]

A nerve conduction study confirmed that my saphenous nerve is damaged. I had lost sensation in the area it covers on my leg. I have all the other nerve pain you describe but until I had the permanent numbness my rheumy and neurologist didn't conduct any studies. I was given pregabalin for the nerve pain at the time. Good luck with your appt- I hope you get some answers as it can be debilitating

[engy]

I first had a tilt table test for POTS and one of the tests is a nerve test that came back positive. Then I had more nerve testing done that showed no large fiber damage but my punch skin biopsy was positive for small fiber neuropathy.

I tried neurontin but made me very sick and tired so now I take ALA and B12 shots and no longer have the pain. I know I may have to start something later on if it gets worse but what I'm doing works for now!

Good luck

[mshistory]

Thank you for the replies - if he doesn't trial me on neurontin then maybe my rheumy will but I don't see him until late June.

I'm worried about adding another medication to my regimen but the only thing I can do now to keep the pain manageable is Lortabs every four to six hours. The GI doc and my rheumy don't want me on NSAIDs both because of potential ulceration and because of the kidney inflammation.

I'm already on so much medication and have restarted Plaquenil on top of everything listed below. Maybe my urinalysis will come back clear and my complement and creatinine levels will be fine so I can get off the CellCept soon 

[finallyadx]

Hi MSHistory, unfortunately my nerve conduction tests did not show neuropathy, but believe me, I have it, in the hands, the feet and in the face at times.  My rheumy believes that I have it as well, but I have opted not to treat it yet.  I take plaquenil right now...if it gets worse I will discuss my options with him, but my understanding is that some of the meds for neuropathy can have some serious side effects.  Not that I would not be willing to try them anyway.

I wish you luck.

[lighthouse33]

I have polyneuropathy.  It is by far the most painful, difficult thing I have to deal with.  Right now, my feet and legs are burning and I?m getting the electric zapping in my cheeks and the stabbing in my eyes.  I?m on Lyrica and Cymbalta.  I can?t move up my Lyrica dosage any higher because I can?t take the side effects.  Below is information about polyneuropathy.  I was diagnosed with a nerve conduction test.

Polyneuropathy means that many nerves in different parts of the body are involved.

Neuropathy can affect nerves that provide feeling (sensory neuropathy) or cause movement (motor neuropathy). It can also affect both, in which case it is called a sensorimotor neuropathy.

Sensorimotor polyneuropathy is a body-wide (systemic) process that damages nerve cells, nerve fibers (axons), and nerve coverings (myelin sheath). Damage to the covering of the nerve cell causes nerve signals to slow down. Damage to the nerve fiber or entire nerve cell can make the nerve stop working.

Nerve damage can be caused by:

Autoimmune (body-wide) disorders
Conditions that put pressure on nerves
Decreased blood flow to the nerve
Diseases that destroy the glue (connective tissue) that holds cells and tissues together
Swelling (inflammation) of the nerves

Symptoms:

Decreased feeling in any area of the body
Difficulty swallowing
Difficulty using the arms or hands
Difficulty using the legs or feet
Difficulty walking
Pain, burning, tingling, or abnormal feeling in any area of the body (called neuralgia)
Weakness of the face, arms, or legs, or any area of the body
Symptoms may develop quickly (as in Guillain-Barre syndrome) or slowly over weeks to years. Symptoms usually occur on both sides of the body. Most often, they start at the ends of the toes first.

Exams and Tests:

An exam may show:
Decreased feeling (may affect touch, pain, vibration, or position sensation)
Diminished reflexes (ankle most commonly)
Muscle atrophy
Muscle twitches (fasciculations)
Muscle weakness
Paralysis

Tests may include:

Biopsy
Blood tests
Electrical test of the muscles (EMG)
Electrical test of nerve conduction
X-rays or other imaging tests

http://www.nlm.nih.gov/medlineplus/ency/article/000750.htm