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Thread: Neuropathy Being Ignored ?

  1. #1
    Join Date
    Jan 2019
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    Neuropathy Being Ignored ?

    Hi, Everyone! I've posted here multiple times and flown in and out over the past year.

    What started with tingling in my left thigh, has increased to include my left shin. This was over the course of 12 months or so - then suddenly, I had sharp pain in my left heel. Orthopedic Surgeon said it was Sural Neuritis. The pain is gone, but electric shocks are still there on the inside, and the skin on the outside is completely numb.

    Normal Nerve Conduction and Normal EMG.

    Went to Rheumatologist, normal bloodwork (slightly elevated CRP / SED rate but that's fairly normal for me as I'm a bit overweight). They tested for autoimmune, rheumatoid arthritis, lupus - they even tested SPEP and Immunofixation for things like myeloma and amyloid - all were negative.

    My Neurologist said that it's nothing to worry about (MRI of Brain and Lumbar/Sac were normal except a few white matter lesions on the brain) and told me I "graduated" his practice. My family practitioner thinks I may have MS and has referred me to a specialist 90 minutes away, but they called and said all looks normal - they'll see me, but they aren't sure what they can do. I'm still going to go.

    My OB/GYN workup was normal, normal mammogram (I'm 37 but my mom had breast cancer so we started early with me) but I do have some uterine fibroids and also PCOS which throws my hormones out of whack.

    Since I started exercising / walking more during my lunches at work to try to lose some weight, my right foot has had tingling / pain in the ball of it, with numb spots in the big toe.

    This Neuropathy is spreading. It feels like I'm walking on bunched socks all the time, I'm uncomfortable unless I'm wearing footwear (including slippers at home), the pain is a searing burn, the numbness in spots is distracting, and my health anxiety is running haywire. I don't know what's wrong but I keep searching the internet for an answer -- which I'm not getting (or it's telling me some AWFUL things that I think my doctors are missing).

    I read that sensory issues don't show on Nerve Conduction / EMG because they're small fiber neuropathies - this would be diagnosed with a skin punch / biopsy, which no one has suggested. I feel lost, and unheard, and I'm not sure where to go from here. I don't know if I'm overreacting, or if something really truly is getting missed. I'm upset and afraid.

    Does anyone here have Neuropathy? Did they diagnose you without a skin punch / biopsy? I don't have diabetes, or anything else that would cause permanent numb spots. I'm just really worried...

  2. #2
    Join Date
    Aug 2013
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    21,288

    Re: Neuropathy Being Ignored ?

    I have Neuropathy in my feet from chemo. As its a side effect from the chemo, I wasn't tested as the symptoms were enough to diagnose it. Regardless of an actual diagnosis, its one of those things I just learn to live with and consider it the "new normal". There are medications that can help. I was on Gabapentin for years (recently stopped as it really wasn't helping anymore) and I was offered Lyrica which I refused (just don't need another pill to take). While its a nuisance and uncomfortable at times, I just deal with it.

    Positive thoughts
    __________________
    "Eat. Drink. Enjoy the work you do. Be thankful for the blessings God gives you in this life. Live, love and seek out the things that bring your heart joy. The rest is meaningless... Like chasing the wind." King Solomon

    The best help is the help you give yourself! http://cbt4panic.org/

  3. #3
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    Re: Neuropathy Being Ignored ?

    I'm sorry you deal with this nuisance, Fishmanpa. Ugh. It's super annoying.

    I'm pretty much ok with the fact that I'll have to live with it - what worries me is that it's spreading and does not have a reason why. I know a lot of people have diabetic or chemo-induced neuropathy, but I'm mostly worried about the causation rather than the symptom.

  4. #4
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    Re: Neuropathy Being Ignored ?

    If you don't have any of the typical causes as you've stated, it could be as simple as a vitamin deficiency. I take a B complex and Vitamin E daily as they're essential to good nerve health. Limit alcohol as well.

    Positive thoughts
    __________________
    "Eat. Drink. Enjoy the work you do. Be thankful for the blessings God gives you in this life. Live, love and seek out the things that bring your heart joy. The rest is meaningless... Like chasing the wind." King Solomon

    The best help is the help you give yourself! http://cbt4panic.org/

  5. #5
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    Jan 2019
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    102

    Re: Neuropathy Being Ignored ?

    Unfortunately, it's not a vitamin deficiency either - my B12 was a bit low for awhile but I've been getting shots for it and it's up to 500+ now. I haven't been taking Vit E though so I will start! I don't drink very much alcohol - and I do know a lot of neuropathy is "idiopathic," but with health anxiety, "idiopathic" is just a short way of saying "let us drive you crazy with google searches" lol

  6. #6
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    Re: Neuropathy Being Ignored ?

    Quote Originally Posted by gailveronica View Post
    I do know a lot of neuropathy is "idiopathic," but with health anxiety, "idiopathic" is just a short way of saying "let us drive you crazy with google searches" lol
    You have a very good point there You actually have a cause and effect in that the latest symptoms this started when you started exercising. It really could be as simple as irritated nerve endings due to activity after being dormant or even as simple as the shoes you're wearing.

    I know what you're going to say... "But it started before that." Thing is, it doesn't matter as medical professionals have ruled out any sinister cause. You know the deal....

    Positive thoughts
    __________________
    "Eat. Drink. Enjoy the work you do. Be thankful for the blessings God gives you in this life. Live, love and seek out the things that bring your heart joy. The rest is meaningless... Like chasing the wind." King Solomon

    The best help is the help you give yourself! http://cbt4panic.org/

  7. #7
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    Re: Neuropathy Being Ignored ?


  8. #8
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    Oct 2019
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    Re: Neuropathy Being Ignored ?

    I can sympathize. In my case, I was diagnosed as diabetic last April. I had no symptoms at the time. Quickly lowered my blood sugar levels to normal levels.....and then the pain in my feet started. Burning/aching type pain. My A1C has been at 5.2% for the last 6 months. I'm hoping with time this will get better.

  9. #9
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    Jan 2019
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    102

    Re: Neuropathy Being Ignored ?

    It's crazy, since posting yesterday I feel worse, my tingling in my legs is unreal and my feet are feeling awful - and my head is super heavy feeling and I got a 20 minute ocular migraine (I think) during the day yesterday (I couldn't see anything, just bright squiggly lines for a good 20 min). My neuro did an MRI last March but without contrast and I'm just... worried that there's a brain tumor or something really wrong that's being missed. I also wonder if this is all anxiety-driven because I'm hyper focused due to taking my mind off coronavirus and trying to distract myself is driving me to have stress migraines / neuropathy feelings. Sigh. This health anxiety stuff is so hard to handle :(

  10. #10
    Join Date
    Jan 2019
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    102

    Re: Neuropathy Being Ignored ?

    I actually just got the update from my orthopedist about my EMG and I'm terrified it's ALS:

    My left sural nerve has been acting up, burning pain and numbness at the heel and through the toes - as well as now, my right foot (big toe) is being affected.


    I had an EMG done back in January when it was just my left foot and here are the results:


    All F Wave latencies were within normal limits


    All H Reflex latencies were within normal limits


    Needle evaluation of the Left abductor digiti quinti muscle showed slightly increased spontaneous activity and increased motor unit duration. All remaining muscles showed no evidence of electrical instability.


    Impression: Inconclusive study


    (EMG reviewed mild chronic and acute neurogenic changes in the left abductor digiti quinti muscle only. This could be consistent with tarsal tunnel syndrome affecting the lateral plantar nerve versus a mild S1 radiculopathy.)


    Left AbdDigQuiniti LatPlantar S1-2:
    Ins Act: Nml
    Fibs: 1+
    Psw: Nml
    Amp: Nml
    Dur: +Incr
    Poly: 0
    Int Pat: Nml
    Recruitment: Nml


    What does this mean? My Orthopedist said that it was a normal study... ?

    Doesn't ALS show fibs?? What on earth... is going on????

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