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EXTREME widespread nerve pain
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EXTREME widespread nerve pain

Thank you so much for your time.  I have been having problems for almost a year now. I have extreme pain mostly in my back and legs that gets worse throughout the day, along with my left arm twitching, and almost continous buzzing in my left foot. lately my tongue has started an occassional buzz and I get some tingling and muscle pain that moves around from one day to the next, and nausea (like motion sickness) and balance problems. I have consistantly had considerable trouble picking up the front of my feet when walking. i often drag or swing my right foot unconciously. I wake up every night with EXTREME searing pain throughout my back and legs all the way to my toes.
   I have been tested for lupis, lymes, rheumatory arthritis, B12, and thyroid, and ANA(?).  I have had MRI's (no contrast) of entire spine and brain. The brain was fine and spine showed only minor problems. I have no diganosis, except possible fibromyalgia or CMP. I have been to P.T., and a chiro. I have tried many muscle relaxers, anti-inflammatories, cortisone shots, OTC painkillers. vicodin and muscle relaxers help with muscle pain, but they do not even touch the nerve pain. my pain doc cut me off cuz she is sure it is MS or another neuro thing. My neurologist says no MS and cannot find a cause. i am in SO MUCH PAIN. i am scheduled for an EMG in left leg, and maybe sleep study. if they show nothing, he is dropping me too. i am desperate! i hurt so bad and it is absolutley real.  any suggestions? sorry so long.
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Avatar_n_tn
Your symptoms are real, and it is unfortunate that you have found no relief yet. It is encouraging however that you do not have evidence of an abnormal nervous system on MRI. The symptoms are difficult to pinpoint to one specific area of the nervous system. There may be an element of central sensitization of pain - causing you to be more sensitive to stimuli than normal - certain medications like amitryptaline, can help modulate the pain and reduce this
It may also be helpful to see a chronic pain psychologist who can help you to cope with the symptoms and reveal how your pschology is influencing your symtpoms (which is probably is)
Followup with your neurologists is important so any new or progressive symptoms can be evaluated.
A rare but testable cause if not tested for already might be stiff person syndrome - GAD antibodies in teh blood or spinal fluid can point ot the diagnosis. Furhter testinf might include a spinal fluid analysis anyway.

Good luck
12 Comments
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Avatar_n_tn
Hello. I have similiar problems as you and have had all the same tests you have.  Nothing yet.  I will be having the emg tomorrow, which should tell much more than some of the other tests I have had.  I do have a bad disc in my lumbar area but they said it would not cause all of the nerve pain I have been having.  Do not let them off the hook.  This is your life and you have the right to know what is making this happen, even if it is not life threatening and may go away on it's own. That is their job.  Stay on them!
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Avatar_n_tn
Have you taken a neurotoxic medicine during the last two years. There are many prescription drugs that cause intense neuropathies, some of them very long lasting and/or permanent. Among them are antibiotics commonly considered safe. Many of these neuropathies emerge normally weeks to months after completing the treatment.
Take care.
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Avatar_n_tn
Thank you so very much for your time and suggestions of what  is happening. Good luck to anyone else still looking for help.
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Avatar_n_tn
Hi, I was diagnosed with idiopathic peripheral neuropathy which did not show on my EMG but did show in a skin biopsy.  My symptoms are very similar to yours.  How did your EMG go?  Hope it wasn't too bad.  Hang in there!
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Avatar_n_tn
Had similar leg/nerve pain.  Neurologist feels I might have early form of MS although no definitive evidence.  However, dr gave prescription for Neurontin which I did not like the way I felt and then tried me on Cymbalta.  Cymbalta has dialed down pain from 8 to a 5/6 allowing me to sleep again. Everything goes poorly when you are sleep deprived.  The cymbalta is used as an antidepressant as well as diabetic neuropathy.  I have not had any problems with it-only good.
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Avatar_n_tn
I have been on the internet all day trying to help my 43 year old sister out. She has extreem burning from her insides out and it feels like she is being attacked with a million pins and needles. It's attacking her entire body, including her eyes, nose, throat, etc. The doctor says she has Peripheral Neuropathy. She was diagnosed with Myasthesia Gravis about five years ago. Could these two problems be related? Is it possible to just wake up one day and have Peripheral Neuropathy? About six months ago she lost her sence of taste. Seems like most people have symtoms (symptoms) starting in one spot on their body, not the entire body. Her Neurology doctor is absolutely no help. He doesn't know what she has so he's brushed her off to her physician. Her physician is determined to get to the bottem of this problem. Has anyone in here ever experienced this pain on their entire body? Any help would be greatly appreciated.
I want her to go to see an acupuncture specialist. I think these medications out there make things worse.

Respectfully,

***@****
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Avatar_n_tn
Thank you so much for the email Carol. I'm looking into it now.
I just spoke with my sister. She had a KAT SCAN yesterday and everything was normal. Now she has horrible back pain. She thought it was her kidney, but it's not. I'm so worried about her, and I'm 3000 miles away. I wish I could make her pain go away.

Deb
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Avatar_n_tn
Perhaps this might help you...I have Fibromyalgia as well as Periferal Nueropathy and the pain in my lower back and legs is severe and does not respond to medication - BUT -it does respond to the use of a TENS unit.  Your insurance company will actually buy one for you as long as your doctor certifies that you require it.  EMPI is the best brand (and be sure to ask for the XL with the 2 lead capacity.)
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Avatar_n_tn
Hello I wonder if you can help.  I also have been diagnosed with small fibre neuropathy and no cause can be found.  Mine started in feet but now is up the whole of both legs and hands.  Does anyone know if it stops.  Also you say you have fibromyalgia too.  How do you distinguish between the two?  Are they different pains?  I have different pain in thighs to the rest of my leg - more cramps in top of leg and burning in bottom.  Thanks
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Avatar_n_tn
Hi,
I have had the same symptoms. The foot thing is called foot drop and nausia and dizziness can be debilitating. Pins and needles in different parts of the body from one day to the next and that lovely searing pain in your back and down your leg I have described as feeling like someone has poured acid on me. I used to wake up sweating and screaming, now I'm more used to it and sometimes moving into another position helps. You said that your MRI was without contrast. Please have your doctor order one with the contrast as it highlights any lesions in the brain. I was diagnosed with MS in October 2002, a spinal tap, MRI w/contrast, and a test called evoked potential confirmed the diagnosis. Carol in PA has listed many symptoms associated with Lyme disease and most of those same symptoms will fit several other diseases, such as MS, Lupus (have a sister and brother with Lupus), RA,(have a sister with RA) Thyroid, etc. Just remember that when you are trying to get a diagnosis many of the other diseases must be ruled out since there is not a specific test for MS and there are tests for the others. My doctor had prescribed Neurontin for the nerve pain in my leg and back. I also had Trigeminal Neuralgia, a horrific pain in the lower jaw caused by inflamation (inflammation) of the nerve. The Neurontin also helped with that. My doctor said they have had alot of sucess with Cymbalta and pain in the body as well as nerve pain, I've only been on it about a week and am about to go to the full dose and I am already seeing a difference in the level of pain.
Good luck
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Avatar_n_tn
I want you to know that I have read your comment and feel so BAD for you.  I also want to tell you about a juice I have been drinking that has 100% taken my back pain away and because of that I am telling the world!  I accidentally found out about it from a friend who had a toothache disappear after taking it.  I actually started it for the energy boost it gives and much to my suprise my pain of 7 solid years left after 10 days.  I started selling it because NO ONE in my town sold it.  In 7 short weeks I have had 25 people with pain start it and only one has not received relief yet because she hasn't been on it long enough.  I would encourage you to give it a try because I have seen AWESOME relief from pain.  We recommend 2 to 3 oz 3 times per day.  Please don't let the fact that I sell it deter you.  The commission is very small ($5).  I am a helper at heart and I hurt for you being in so much pain.  My cardiologists wife started it 12 days ago and has been AMAZED at her results. This is a natural anti-inflammatory.  I will give my website to you.  Please feel free to look around.  This juice has literally changed my life.  There is a money back guarentee and will not react with medication.  If you are on coumidin you do need to be under a Doctor's care.  It is also all natural.  Sorry so long.  I sure wish I could talk to you.  I live in TX.  Hope you find Relief!
www.LoveLifeAgain.com
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