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Old 05-12-2013, 09:46 AM   #1
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Exclamation Nerve pain spreading

I have total body burning numbness, head is numb faces feels tight, ears hissing, teeth hurt difficult to control jaw , hands are burning and constantly squeezing things I hold neck stiff legs and feet burning stiff gait and difficulty controling movements buttocks burn whole body feels like sand paper and sholders feeling heavy and pulling forward body is always cold in a 75 degree room or under covers all senses alterd feel like I'm walking on cement even though I'm on carpet bed feels hard. Please what can be causing this the freezing is killing me. I can't stand the feel of clothes . Had all types of test done docs just say its systemic , am I the the only one? Please tell me someone else has this!

 
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Old 05-12-2013, 03:40 PM   #2
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Re: Nerve pain spreading

Hugs, Gwen[/QUOTE]
Is your body cold all the time and do you have bowel and bladder problems. Please discribe your pain and sensations. This presure in my head is what's really bothering me with loss of eqilibrium and loosing cognitive function!

Last edited by Administrator; 01-28-2014 at 06:09 AM.

 
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Old 05-13-2013, 01:40 PM   #3
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Question Re: Nerve pain spreading

Hi Terlin, I hope you are having a better day today. Your question is paradoxical to me in that I feel hot all the time. Sometimes my face is so beet red it is embarrassing! It's strange to have numbness and pain at the same time isn't it? At times the pain feels like inflammation and horrible soreness. At other times it's aching that is so horrible I feel I want to escape my body and of course I can't. I have read about issues with bodily functions but so far I have not had this problem, but it is always in the back of my mind as things degenerate. My problems are like I mentioned lower body so far. I'm concerned about the pressure in your head, equilibrium and cognitive issues. Has your Dr. done any tests i.e. EEG, MRI or anything to see whats going on? And has your Dr. elaborated on what he/she means by systemic? Hugs, Gwen

 
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Old 05-13-2013, 02:39 PM   #4
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Re: Nerve pain spreading

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Hi Terlin, I hope you are having a better day today. Your question is paradoxical to me in that I feel hot all the time. Sometimes my face is so beet red it is embarrassing! It's strange to have numbness and pain at the same time isn't it? At times the pain feels like inflammation and horrible soreness. At other times it's aching that is so horrible I feel I want to escape my body and of course I can't. I have read about issues with bodily functions but so far I have not had this problem, but it is always in the back of my mind as things degenerate. My problems are like I mentioned lower body so far. I'm concerned about the pressure in your head, equilibrium and cognitive issues. Has your Dr. done any tests i.e. EEG, MRI or anything to see whats going on? And has your Dr. elaborated on what he/she means by systemic? Hugs, Gwen
Yes I have had EEG MRI evoked potential test and skin biopsy which showed borderline neuropathy. Emg done and and that was borderline. I'm confused as to why he has said that my old neuro said I have neuropathy, but then was only in the feet. I am very scared and with all that's going on everything seams sureal my smell taste and hearing is all messed up I take a shower and I feel all stiff and I don't feel clean a bed is very uncomfortable I can only sleep with melatonin and have to urinate every 2 hrs wich when I do my muscles tighten up. This is a living hell. The docs just say its anxiety and my family thinks this . They all say it's me not neuropathy then what is it

 
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Old 05-13-2013, 03:07 PM   #5
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Re: Nerve pain spreading

Whenever I run into people with multiple systemic symptoms that seem weird to all the Drs., it turns out to be autoimmune disease. Autoimmune diseases cause peripheral neuropathy and are associated with Vit B12 deficiencies that cause PN as well. I would try to pursue looking for evidence of autoimmune diseases, like lupus, (the classic autoimmune disease). Have you ever seen a rheumatologist? Skin burning, temperature perception disturbances, cognitive problems, digestive issues all can be from autoimmune disease. I would pursue that since everything else has ended as a dead end for you. Are you taking Vit B12 and folic acid supplements? I would. I have lupus myself with PN and they do help my PN symptoms.

 
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Old 05-13-2013, 03:35 PM   #6
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Re: Nerve pain spreading

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Whenever I run into people with multiple systemic symptoms that seem weird to all the Drs., it turns out to be autoimmune disease. Autoimmune diseases cause peripheral neuropathy and are associated with Vit B12 deficiencies that cause PN as well. I would try to pursue looking for evidence of autoimmune diseases, like lupus, (the classic autoimmune disease). Have you ever seen a rheumatologist? Skin burning, temperature perception disturbances, cognitive problems, digestive issues all can be from autoimmune disease. I would pursue that since everything else has ended as a dead end for you. Are you taking Vit B12 and folic acid supplements? I would. I have lupus myself with PN and they do help my PN symptoms.
I was taking b supplements but neuro took me off them saying my b 12 was high I know you can't have to much, and I am taking alpha lipoic acid which I had to ask him about he dosnt seem to offer anything. I'm seeking a new doc. But I thought u of m hospital is a high rated hospital but they all just treat you as a number no compassion. Every thing they tried for my bowels and other problem just don't seem to help. Now my family wants to take me back to the hospital and put me on suboxone I'm scared as to my bowel problems and the side affects have you heard of the stuff for nerve pain like mine?

 
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Old 05-13-2013, 07:34 PM   #7
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Re: Nerve pain spreading

Dear terlin, Have you had any type of back or neck surgery, meningitis, myelogram, epidural steroid injections, epidural anesthesia, tuberculosis of spine anything where anyone has given you a spinal tap or lumbar puncture? Also, do you have your MRI reports on cervical, thoracic or lumbar spine? I have adhesive arachnoiditis which is not a disease but a medical condition but happens after a foreign substance like blood, bacteria, dye, steroids, preservatives, etc enters the thecal sac or the sac the spinal cord, spinal nerves & CSF are in & many of the symptoms that are associated with arach are very similar to the symptoms that you describe but you must have had an invasive test, surgery or treatment or it cannot be arachnoiditis.

Last edited by gmak; 05-13-2013 at 07:39 PM.

 
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Old 05-14-2013, 05:00 AM   #8
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Re: Nerve pain spreading

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Dear terlin, Have you had any type of back or neck surgery, meningitis, myelogram, epidural steroid injections, epidural anesthesia, tuberculosis of spine anything where anyone has given you a spinal tap or lumbar puncture? Also, do you have your MRI reports on cervical, thoracic or lumbar spine? I have adhesive arachnoiditis which is not a disease but a medical condition but happens after a foreign substance like blood, bacteria, dye, steroids, preservatives, etc enters the thecal sac or the sac the spinal cord, spinal nerves & CSF are in & many of the symptoms that are associated with arach are very similar to the symptoms that you describe but you must have had an invasive test, surgery or treatment or it cannot be arachnoiditis.
I had hernia surgery gut is spasming upper gut is sunken in it literally sucking in on me hard to breath can't cough up phlem it's like avacume every hear of that docs say its anxiety I know it ain't my gut is sucking in please help me! Can cauda equina cause this!

 
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Old 05-14-2013, 11:56 AM   #9
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Re: Nerve pain spreading

Terlin, You need to be seen by a stomach, lung, neuro, internist who knows how many drs or which dr, we arent drs.Your drs say it is systemic, through out systems in the body or in the bloodstream like a systemic infection, systemic disease? How long do you think you can just lay there so miserable & not suffer possible consequences with your health? I do not know this answer, if there is a problem that you cannot get to dr if i were you & i had all nerve pain, gi system, copd, trouble breathing etc i would call an ambulance & go to ER if i couldnt make dr appt & get transportation.Sub oxone is not for people having acute pain.

Last edited by gmak; 05-14-2013 at 12:09 PM.

 
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Old 05-14-2013, 12:28 PM   #10
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Re: Nerve pain spreading

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Terlin, You need to be seen by a stomach, lung, neuro, internist who knows how many drs or which dr, we arent drs.Your drs say it is systemic, through out systems in the body or in the bloodstream like a systemic infection, systemic disease? How long do you think you can just lay there so miserable & not suffer possible consequences with your health? I do not know this answer, if there is a problem that you cannot get to dr if i were you & i had all nerve pain, gi system, copd, trouble breathing etc i would call an ambulance & go to ER if i couldnt make dr appt & get transportation.Sub oxone is not for people having acute pain.
Hospital keeps sending me home say its not life threatening , my family agrees say its up to me now I'm lost there insisting anxiety which doss say when they don't know what's wrong, one doc says suboxone will help my pain my family thinks he's right please tell them there wrong!

 
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Old 05-18-2013, 06:02 AM   #11
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Re: Nerve pain spreading

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Hospital keeps sending me home say its not life threatening , my family agrees say its up to me now I'm lost there insisting anxiety which doss say when they don't know what's wrong, one doc says suboxone will help my pain my family thinks he's right please tell them there wrong!
Now difficulty eating swallowing feel lost in my house noise is alterd loosing my spelling whole body numb and cold eveything hurts tell me iTs more than anxiety !

Last edited by Terlin; 05-18-2013 at 06:10 AM.

 
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Old 05-19-2013, 05:04 PM   #12
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Re: Nerve pain spreading

Quote:
Originally Posted by Terlin View Post
Now difficulty eating swallowing feel lost in my house noise is alterd loosing my spelling whole body numb and cold eveything hurts tell me iTs more than anxiety !

Listen carefully,

You need to be under the care of a neurologist. Your health needs to be managed by your GP and your specialist and a "pain/health" plan need to be put in place for you. You seem to be freaking out and you have not said how these symptoms started??

 
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Old 06-09-2013, 08:31 AM   #13
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Re: Nerve pain spreading

Terlin I responded to one of your other post and I agree with Ladybug. Autoimmune disease as well. Lupus is also a possibility. Its hard for doctors to take you serious when they cant see or confirm by evidence what your feeling. You are not alone. I was a bit shocked to read your vit B was good because Vit B defiency can cause some of your symptoms. Please go see a nuerologist who is willing to look into this furture for you. Lyrica may help. I did find it helped some but not as I wanted. Most of mine is under a manageable control now and use Lidocain patches for severe isolated locations and it helps alot. Good luck

 
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Old 06-09-2013, 10:23 AM   #14
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Re: Nerve pain spreading

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Terlin I responded to one of your other post and I agree with Ladybug. Autoimmune disease as well. Lupus is also a possibility. Its hard for doctors to take you serious when they cant see or confirm by evidence what your feeling. You are not alone. I was a bit shocked to read your vit B was good because Vit B defiency can cause some of your symptoms. Please go see a nuerologist who is willing to look into this furture for you. Lyrica may help. I did find it helped some but not as I wanted. Most of mine is under a manageable control now and use Lidocain patches for severe isolated locations and it helps alot. Good luck
Waiting for next week to see another neuro, what ever this is it's affecting my mind , I have to be driven by my sister for docs can't sit no more and can hardly walk so painfull and the gastro says my pelvic sphincters arn't relaxing , and feels like my colon is about to burst they say it's anxiety and my sister believes them and blaming evey thing on me. I'm forgeting every thing I'm just praying something gets better but things are getting worse pshc dosnt help it extreamly painfull getting anywhere now I have gerd and a hiatal hernia please pray for me!

 
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Old 07-15-2013, 12:06 PM   #15
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Re: Nerve pain spreading

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Waiting for next week to see another neuro, what ever this is it's affecting my mind , I have to be driven by my sister for docs can't sit no more and can hardly walk so painfull and the gastro says my pelvic sphincters arn't relaxing , and feels like my colon is about to burst they say it's anxiety and my sister believes them and blaming evey thing on me. I'm forgeting every thing I'm just praying something gets better but things are getting worse pshc dosnt help it extreamly painfull getting anywhere now I have gerd and a hiatal hernia please pray for me!
Terlin,

Do you have an update about your condition? Have you found any relief yet?

 
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