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    Old 05-13-2011, 12:10 PM   #1
    machine
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    do I have peripheral neuropathy?

    Hi everyone,

    I have studied the forums, and have found a comment (posted below) that closely resembles my symptoms/experience for the past 9 years.

    "I have been suffering from autonomic, motor, and sensory neuropathies for more than four months. My heart rate dropped by ~30bpm. My BP, usually ~115/75, is down to ~80/50. I get twitches all over my body all of the time. I get pins & needles sensations, shooting pains, and hyper-sensitive spots (excruciating pain with slightest touch), but my biggest complaint is the BURNING PAIN. Neurontin and Lyrica definitely diminish it, but prolonged pressure increases the pain from simmering to SEARING. Does anyone else experience that? I can't sit for more than 10 minutes at a time. I have been waking up with numb arms for months. It freaks me out to find cold, dead limbs attached to my body! I've had TONS of blood work - all results normal. MRIs of my brain, c-spine, and lumbar region - all okay. Lumbar puncture - normal. EMG & NCV - fine. Next step - neuro-muscular specialist. Will keep you posted. I'm sorry you are suffering. I feel your pain! Sometimes, extreme temperatures (heating pad set to high/ice pack) applied to, or near, the site of the burning pain keep my nerves temporarily preoccupied so they don't register the pain as much. Tiger's Balm also provides some relief while my nerves focus on that icy-hot sensation. Scalding hot baths help as long as I can stand to be in the tub. If anyone else has any ideas, PLEASE submit them. Good luck to everyone, and be sure to post your results/diagnosis."

    Read more at http://www.healthboards.com/boards/showthread.php?t=400321&ktrack=kcplink

    My story:

    I don't know how it happened, but (at 17 years of age) after I was diagnosed with acute Bronchitis, (which was near after a flu shot as far as I can tell), everything turned upside down.

    I had developed numbing pain in my legs and arms, they would fall asleep rapidly in a given position, and I would wake up half the time with my arms or legs or even face completely asleep.

    This progressed to "pain to the touch" and extreme sensitivity to heat and cold.

    Muscle twitches in my neck, arms and legs were a regular.

    Muscle weakness was apparent.

    Shortness of breathe.

    Digestive system is definitely abnormal (ie: very slow).

    I noticed lymph nodes were slightly swollen in many areas, but would rapidly disappear on and off proportional to my peripheral symptoms.

    This was a very stressful period of time as I have never done drugs (except smoking cigarettes) or had any sexual intercourse/contact.

    Several blood tests were performed and all were normal.

    Many of these symptoms are no longer apparent. I feel that I have either gotten "used" to them or have learned to cope with the symptoms.

    Or taking vitamins and changing my diet has dealt with them.

    Something along the way has definitely helped.

    But they are still there, and I have yet to get to the bottom of this.

    I feel that the neuropathy has reached my neck and upwards, and have difficulty thinking or "foggy-ness".

    I feel as though I have a lack of blood circulation.

    When I don't get enough sleep, I feel "empty", and my neuropathy is at all time high.

    When I get more than enough sleep, I feel tired as though my nerves are "asleep".

    Depending on the position I sleep in, I wake up with a different feeling the next morning, ie: cold hands and feet, lack of breathe, thinking issues...

    When I put my head down on the table in a seated position, I feel the rush of blood going to my head, as though previously the circulation is being cut off. So it actually helps me when I put my head down for a while, it relieves some of my symptoms.

    Currently I feel a burning and sharp pain in my feet, it comes on and off.

    The symptoms are variable and unpredictable of when they will appear.

    I would like to resolve this, any recommendations on what I should do?

    Thank you!

     
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    Old 05-24-2011, 01:42 AM   #2
    Aviatrix36440
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    Exclamation Re: do I have peripheral neuropathy?

    Machine,

    I responded in your other thread. Looking at what you've listed for symptoms, I think you have a lot more going on, and not necessarily from Neuropathy. To really be sure, the first stop I would do would find a Neurologist that specializes in it, and its diagnosis vs guessing after reading the net!

    Cold feeling limbs - that's usually a vascular issue not nerve.
    Face falling asleep? Highly doubtful for Neuropathy.
    Digestive system? Highly doubtful for Neuropathy.
    Neck and above with foggy-ness? Highly doubtful for Neuropathy.
    Shortness of breath? Highly doubtful for Neuropathy.
    Lymph nodes swollen? Highly doubtful for Neuropathy.

    Vitamin deficiencies can bring similar symptoms on for sure.
    Other diseases can bring it on.
    It could be Fibromyalgia based on the broad areas you are describing as well.

    My first stop would be a Neurologist. Trying to guess at whether you have it or not on your own will drive you batty!

    Please let us know what you find out. Take care.

    Quote:
    Originally Posted by machine View Post
    Hi everyone,

    I have studied the forums, and have found a comment (posted below) that closely resembles my symptoms/experience for the past 9 years.

    My story:

    I don't know how it happened, but (at 17 years of age) after I was diagnosed with acute Bronchitis, (which was near after a flu shot as far as I can tell), everything turned upside down.

    I had developed numbing pain in my legs and arms, they would fall asleep rapidly in a given position, and I would wake up half the time with my arms or legs or even face completely asleep.

    This progressed to "pain to the touch" and extreme sensitivity to heat and cold.

    Muscle twitches in my neck, arms and legs were a regular.

    Muscle weakness was apparent.

    Shortness of breathe.

    Digestive system is definitely abnormal (ie: very slow).

    I noticed lymph nodes were slightly swollen in many areas, but would rapidly disappear on and off proportional to my peripheral symptoms.

    This was a very stressful period of time as I have never done drugs (except smoking cigarettes) or had any sexual intercourse/contact.

    Several blood tests were performed and all were normal.

    Many of these symptoms are no longer apparent. I feel that I have either gotten "used" to them or have learned to cope with the symptoms.

    Or taking vitamins and changing my diet has dealt with them.

    Something along the way has definitely helped.

    But they are still there, and I have yet to get to the bottom of this.

    I feel that the neuropathy has reached my neck and upwards, and have difficulty thinking or "foggy-ness".

    I feel as though I have a lack of blood circulation.

    When I don't get enough sleep, I feel "empty", and my neuropathy is at all time high.

    When I get more than enough sleep, I feel tired as though my nerves are "asleep".

    Depending on the position I sleep in, I wake up with a different feeling the next morning, ie: cold hands and feet, lack of breathe, thinking issues...

    When I put my head down on the table in a seated position, I feel the rush of blood going to my head, as though previously the circulation is being cut off. So it actually helps me when I put my head down for a while, it relieves some of my symptoms.

    Currently I feel a burning and sharp pain in my feet, it comes on and off.

    The symptoms are variable and unpredictable of when they will appear.

    I would like to resolve this, any recommendations on what I should do?

    Thank you!

    Last edited by Aviatrix36440; 05-24-2011 at 01:45 AM.

     
    Old 05-24-2011, 08:11 AM   #3
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    Re: do I have peripheral neuropathy?

    Quote:
    Originally Posted by Aviatrix36440 View Post
    It could be Fibromyalgia based on the broad areas you are describing as well.

    My first stop would be a Neurologist. Trying to guess at whether you have it or not on your own will drive you batty!
    x2 on both of the above statements. I know 2 people w/Fibro and they have some symptoms that are somewhat like what I deal with.

    Take care Machine.
    J

     
    Old 05-24-2011, 02:10 PM   #4
    Aviatrix36440
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    Lightbulb Re: do I have peripheral neuropathy?

    Quote:
    Originally Posted by RisingParrot View Post
    x2 on both of the above statements. I know 2 people w/Fibro and they have some symptoms that are somewhat like what I deal with.

    Take care Machine.
    J
    Machine, J reminded me of something (and I reread your original post again). I have numerous friends on the net with Fibromyalgia, but 3 personal friends that were diagnosed over the years, and without sounding like a Lyrica commercial, here were their common pre-diagnosis symptoms:

    1. Flu like aches throughout their bodies a lot of times (no fever)
    2. Tired
    3. Spasms for no real reason.
    4. Stiffness
    5. Nausea (caused most likely due to chronic pain)
    6. Low appitite
    7. Backing off from social activities
    8. Weather sensitive.
    9. More headaches
    10. Nerve twitching in various parts of their bodies.
    11. Low energy during their waking hours.....to name a few.

    With neuropathy, it is pretty 'dedicated' to its specific areas of the body, where as Fibromyalgia can be anywhere in the body at a given time. For me, Lyrica knocks down like 85% of my nerve pain (no nerve meds, debilitating pain). Hopefully you can get a true diagnosis, and they can try nerve pain (narcotics/opiates don't touch nerve pain) medications to see which might be of help.

     
    Old 05-24-2011, 02:34 PM   #5
    machine
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    Re: do I have peripheral neuropathy?

    Thanks to everyone for the replies!

    I will update everyone as soon as the Neurologist gives me some answers. You can bet on it, this place is helping me tremendously!!! Thank you again!

    One thing I would like to mention in reference to my symptoms is that the pain (triggered by pressure such as I'm standing and feel burning pain in my feet, sometimes like walking on glass pain) I experience is with the nerves closest to the skin, all around my body from my feet to even my head.

    It feels also (at times) like my nerves on my skin are vibrating or pulsating at a high frequency. I can even "hear" the vibrations so to speak.

    Funny thing is it reminds me of the sound when I pass high voltage power lines make except only I can "hear" or sense it.
    Another odd thing I notice is that there is very high case of "electrostatic" discharge while touching any door knob. I get them very very frequently, but I'm not sure whether this has anything to do with my symptoms.

    I get very quick numbness in my arms and legs in positions that are regarded as normal to anyone else.

    A tiny bit of pressure on areas of my skin can quickly cause numbness.

    My whole leg or arm can fall asleep in a matter of minutes, even seconds depending on the level my symptoms are at.

    Exercise helps (I assume this is because it helps circulation), but eventually returns.

    I also experience much more annoying symptoms of "brain fog" which causes confusion and lack of concentration.

    I also experience joint pain and stiffness, but mostly stiffness.

    Cold hands and feet in warm conditions.

    I want to mention another symptom; I notice my skin in my mouth is much more "loosened" at times, this only happens sometimes.

    Also, after I eat, I get a huge built-up of phlegm which I have to clear.

    I mentioned my other symptoms (swollen lymph nodes). This was when my symptoms started to appear (over 8 years ago), and as a casual smoker I noticed my lymph nodes would enlarge slightly after smoking.
    I have had no problem with this ever since.

    Overall, I never get sick (colds and flu's). When I do, I recover quickly


    The problem I think I will have is explaining these symptoms to my Neurologist. I don't know which ones to include or exclude, because some symptoms dissapeared should I list those as well?


    Machine

    Last edited by machine; 05-24-2011 at 02:55 PM.

     
    Old 05-24-2011, 03:13 PM   #6
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    Re: do I have peripheral neuropathy?

    Quote:
    Originally Posted by Aviatrix36440 View Post
    Machine, J reminded me of something (and I reread your original post again). I have numerous friends on the net with Fibromyalgia, but 3 personal friends that were diagnosed over the years, and without sounding like a Lyrica commercial, here were their common pre-diagnosis symptoms:

    1. Flu like aches throughout their bodies a lot of times (no fever)
    2. Tired
    3. Spasms for no real reason.
    4. Stiffness
    5. Nausea (caused most likely due to chronic pain)
    6. Low appitite
    7. Backing off from social activities
    8. Weather sensitive.
    9. More headaches
    10. Nerve twitching in various parts of their bodies.
    11. Low energy during their waking hours.....to name a few.

    With neuropathy, it is pretty 'dedicated' to its specific areas of the body, where as Fibromyalgia can be anywhere in the body at a given time. For me, Lyrica knocks down like 85% of my nerve pain (no nerve meds, debilitating pain). Hopefully you can get a true diagnosis, and they can try nerve pain (narcotics/opiates don't touch nerve pain) medications to see which might be of help.


    1. Flu like aches throughout their bodies a lot of times (no fever)
    2. Tired
    3. Spasms for no real reason.
    4. Stiffness
    5. Nausea (caused most likely due to chronic pain)
    6. Low appitite
    7. Backing off from social activities
    8. Weather sensitive.
    9. More headaches
    10. Nerve twitching in various parts of their bodies.
    11. Low energy during their waking hours.....to name a few.

    Going over these symptoms, I would say all of the above except for headaches.

     
    Old 05-24-2011, 04:00 PM   #7
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    Re: do I have peripheral neuropathy?

    Howdy Machine,

    As for what to bring or tell your Neurologist? I could do a "copy and paste" of this post you just made into Word, and bring that to him/her.

    Another thing a lot of us with spine issues and chronic Neuropathy do is keep a "pain log" so the doctor can see "what" brings on pain, or reduces it. When is the best times for me, when is the worst etc. I also have blank human forms I made and I mark them with 'mechanical pain' and 'nerve pain' areas. I use shading to show where I tingle or spasm all the time. This gives a picture your doctor can see. Ps... another reason *I* do this, is sometimes my brain forgets some questions or information I wanted to give to my doctor....

     
    Old 05-24-2011, 04:30 PM   #8
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    Re: do I have peripheral neuropathy?

    Quote:
    Originally Posted by Aviatrix36440 View Post
    Howdy Machine,

    As for what to bring or tell your Neurologist? I could do a "copy and paste" of this post you just made into Word, and bring that to him/her.

    Another thing a lot of us with spine issues and chronic Neuropathy do is keep a "pain log" so the doctor can see "what" brings on pain, or reduces it. When is the best times for me, when is the worst etc. I also have blank human forms I made and I mark them with 'mechanical pain' and 'nerve pain' areas. I use shading to show where I tingle or spasm all the time. This gives a picture your doctor can see. Ps... another reason *I* do this, is sometimes my brain forgets some questions or information I wanted to give to my doctor....

    Thank you so much for your help!

    Very much appreciated...

    For the "pain log", I have tried this before.
    The time that the severity was high was when the symptoms first appeared and lasted for about 1-2 years. Now it is lower but more constant, either "not bad" or "bad". I could keep track of when my symptoms were worse or not, but I could never determine what was causing the severity. Waking up in different positions and different durations seemed to cause these differences as well which would affect me the rest of the day.

    I have tried a "food log" as well to see if certain foods were causing it. But this seemed to take me nowhere. I am now on a almost vegan diet completely for the past 2 years (fish is about all the meat I will ingest).

    Do you have any suggestions related to my previous comment:


    Quote:
    One thing I would like to mention in reference to my symptoms is that the pain (triggered by pressure such as I'm standing and feel burning pain in my feet, sometimes like walking on glass pain) I experience is with the nerves closest to the skin, all around my body from my feet to even my head.

    It feels also (at times) like my nerves on my skin are vibrating or pulsating at a high frequency. I can even "hear" the vibrations so to speak.

    Funny thing is it reminds me of the sound when I pass high voltage power lines make except only I can "hear" or sense it.
    Another odd thing I notice is that there is very high case of "electrostatic" discharge while touching any door knob. I get them very very frequently, but I'm not sure whether this has anything to do with my symptoms.

    I get very quick numbness in my arms and legs in positions that are regarded as normal to anyone else.

    A tiny bit of pressure on areas of my skin can quickly cause numbness.

    My whole leg or arm can fall asleep in a matter of minutes, even seconds depending on the level my symptoms are at.

    Exercise helps (I assume this is because it helps circulation), but eventually returns.

    I also experience much more annoying symptoms of "brain fog" which causes confusion and lack of concentration.

    I also experience joint pain and stiffness, but mostly stiffness.

    Cold hands and feet in warm conditions.

    I want to mention another symptom; I notice my skin in my mouth is much more "loosened" at times, this only happens sometimes.

    Also, after I eat, I get a huge built-up of phlegm which I have to clear.

    I mentioned my other symptoms (swollen lymph nodes). This was when my symptoms started to appear (over 8 years ago), and as a casual smoker I noticed my lymph nodes would enlarge slightly after smoking.
    I have had no problem with this ever since.

    Overall, I never get sick (colds and flu's). When I do, I recover quickly


    The problem I think I will have is explaining these symptoms to my Neurologist. I don't know which ones to include or exclude, because some symptoms dissapeared should I list those as well?
    Again, much help is appreciated...

    Thank you!

    Last edited by machine; 05-24-2011 at 04:49 PM.

     
    Old 05-24-2011, 05:17 PM   #9
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    Re: do I have peripheral neuropathy?

    Machine,

    For your pain log, try not to 'diagnose' or try to figure what is causing said pain unless you can say for instance "When leaning forward 10-15 degrees to brush my teeth within minutes I get searing pain in my upper lumbar. If I ignore it, a few minutes later my thighs are on fire, and get weak." Then you are directly connecting to something, see? Otherwise list symptoms in their severity for the log. Example again: "Standing more than a few minutes generates severe pain (7+) in my back which shortly thereafter radiates into my thighs."

    With a write up like those above, it directly lets the doctor know what does and doesn't work for you and your body.

    As to your other comments and request of input. I tried to imagine those issues with me to get a picture. First if you will, picture this. We/Our bodies are reactive and fight back, kind of like if someone pushes you, you push back. It might not be the same level as you were pushed, but the guy falls hard on his butt, and his butt hurts. Okay...paradigm now given..

    A lot of the symptoms can be attributed to so many issues not nerve related, and some related. The problem is sometimes when we are trying to figure out (self diagnose) we overly look at things, and make them more than they are unless we can explain them. We've all been there sadly. I've had 5 nerve surgeries, 2 fusions and have 3 more spine surgeries in my future. With that stated, I get a new zing or numb area, the first thing in my brain is "Crap, now what?" What I am getting at is we all micro look at changes.

    I would see my General Practitioner for the sensitivity (touch and numb), sudden numbness of legs and arms, lymph nodes, brain fog and vibrations. Have you had blood work that looks at your mineral levels such as B12, B6, Iron, Folic Acid or thyroid/hormone/testosterone levels, and a big one for undiagnosed diabetes - A1C? Diabetes can induce a lot of issues reference nerves as well as other symptoms. Regular CBC and such doesn't cover a lot of these.

    Like you, I am a patient (continuous) in this nerve/spine hell. (G) Most of what I can suggest is only based on what I myself have had to go through for diagnosis. Sadly, but happily too, mine is non disease, but from the spine.

     
    Old 05-24-2011, 05:37 PM   #10
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    Re: do I have peripheral neuropathy?

    Were you ever given cipro or levaquin or a fluoroquinolone? I saw where you said you were ill & recieved a shot, but did they give you an IV antibiotic or antibiotic pills at any time? You describe fluoroquinolone poisoning. I am suffering with that & could have written your letter myself! Please post your results after your neuro visit...would like to see what theu say. Also, when your bp & heart rate drop, how long do those episodes last? for me anywhere from a couple of days, to a week & 1/2...very scary, as I don't have insurance & unable to see a neuro for that reason. Good luck!

     
    Old 05-24-2011, 06:39 PM   #11
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    Re: do I have peripheral neuropathy?

    Quote:
    Originally Posted by Monte Cristo View Post
    Were you ever given cipro or levaquin or a fluoroquinolone? I saw where you said you were ill & recieved a shot, but did they give you an IV antibiotic or antibiotic pills at any time? You describe fluoroquinolone poisoning. I am suffering with that & could have written your letter myself! Please post your results after your neuro visit...would like to see what theu say. Also, when your bp & heart rate drop, how long do those episodes last? for me anywhere from a couple of days, to a week & 1/2...very scary, as I don't have insurance & unable to see a neuro for that reason. Good luck!
    Hi Monte Cristo,

    I am not sure whether I was given these drugs, however I know I was taking some form of antibiotics after being diagnosed with acute Bronchitis.

    And before that I recieved a flu shot.

    Shortly after these events nothing was ever the same again.

    I'm not sure I read you right on this, but are you saying that you have the same symptoms I have and you determined they were caused by fluoroquinolone poisoning?


    Thanks for the reply!

     
    Old 05-24-2011, 06:50 PM   #12
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    Re: do I have peripheral neuropathy?

    Quote:
    Originally Posted by Aviatrix36440 View Post
    Machine,

    For your pain log, try not to 'diagnose' or try to figure what is causing said pain unless you can say for instance "When leaning forward 10-15 degrees to brush my teeth within minutes I get searing pain in my upper lumbar. If I ignore it, a few minutes later my thighs are on fire, and get weak." Then you are directly connecting to something, see? Otherwise list symptoms in their severity for the log. Example again: "Standing more than a few minutes generates severe pain (7+) in my back which shortly thereafter radiates into my thighs."

    With a write up like those above, it directly lets the doctor know what does and doesn't work for you and your body.

    As to your other comments and request of input. I tried to imagine those issues with me to get a picture. First if you will, picture this. We/Our bodies are reactive and fight back, kind of like if someone pushes you, you push back. It might not be the same level as you were pushed, but the guy falls hard on his butt, and his butt hurts. Okay...paradigm now given..

    A lot of the symptoms can be attributed to so many issues not nerve related, and some related. The problem is sometimes when we are trying to figure out (self diagnose) we overly look at things, and make them more than they are unless we can explain them. We've all been there sadly. I've had 5 nerve surgeries, 2 fusions and have 3 more spine surgeries in my future. With that stated, I get a new zing or numb area, the first thing in my brain is "Crap, now what?" What I am getting at is we all micro look at changes.

    I would see my General Practitioner for the sensitivity (touch and numb), sudden numbness of legs and arms, lymph nodes, brain fog and vibrations. Have you had blood work that looks at your mineral levels such as B12, B6, Iron, Folic Acid or thyroid/hormone/testosterone levels, and a big one for undiagnosed diabetes - A1C? Diabetes can induce a lot of issues reference nerves as well as other symptoms. Regular CBC and such doesn't cover a lot of these.

    Like you, I am a patient (continuous) in this nerve/spine hell. (G) Most of what I can suggest is only based on what I myself have had to go through for diagnosis. Sadly, but happily too, mine is non disease, but from the spine.

    Hi Aviatrix36440,

    I have done extensive blood work many times at my family doctors clinic and all showed normal.

    For diabetes, I performed checks on a daily basis for months. The meter showed normal.

    My family doctor tested my blood sugar after letting her know I was worried about this, this confirmed to be normal as well. Apparently B12 and all were done as well.

    Last edited by machine; 05-24-2011 at 06:57 PM.

     
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