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Neuropathy (?) or something else...

Posted , 8 users are following.

nicole00
nicole00

Hello, 

Been through a rough journey to figure out what is going on with me. Almost 6 months ago everything changed... briefly, everything started from numbness in my hands and feet I went to the ER and did a brain scan everything was clear. I went to see my family doctor and ordered an MRI, everything was clear indicating no Tumor, no MS. Later on these symptoms changed and I started experiencing lots of tingling and burning sensations, sleeping was so difficult. Went to see a neurologist and did an EMG test and a bunchhhhh of blood work, possibly all blood work and all came clear. Neurologist indicated it is some sort of neuropathy ( I am not diabetic). Currently I am experiencing a lot of internal fasciculations ( movements under my skin- I cannot see it on my skin but I can feel it ) with that I experience some sort of pain - feelings like burning / like i’m pinching my skin for a long time. Those feelings are mostly everywhere but I feel it around my hands area the most. As I sleep I don’t feel it as much, as I wake up and start moving my muscles i feel it more. Any recommendations on what this could be ? What should I do? Was thinking asking for a nerve or muscle biopsy. I am not sure what else to ask the doctor at this point. Should I get a refer to see a neuromuscular specialist ?? 

Living like this is very difficult and annoying, these feelings really influence on my mood, been feeling confused, sad, anxious for 6 months now. Thinking it’s somerhing that doctors can find. 

Thanks, Nicole 

0 likes, 21 replies

21 Replies

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  • anja46452
    anja46452 nicole00

    Posted

    Hi Nicole.

    A few recommendations:

    1. Have you been taking any multivitamins - especially ones with B6? It's easy to become B6-toxic. If so, stop taking them immediately.

    2. Have you got mercury fillings? If so, get checked for mercury toxicity as well.

    3. Check any other medication you might be taking. Things like statins can cause this.

    4. Get screened for gluten intolerance and gastric/digestive disorders like Celiac, Chron's etc. All of these can cause neurological problems later in life - even in the absence of digestive symptoms. I'd recommend cutting out all grains (so no pasta, bread, cake, flour, oats, rice, corn etc), sugar, sweetener and dairy. That helped me a quite a bit.

    Skin biopsy is the only way to verify small fibre neuropathy, so I'd get on it. Good luck!

    • nicole00
      nicole00 anja46452

      Posted

      Thanks a lot ! Very good recommendation. I actually been told to take multivitamins so just started a few days ago. Would you recommend to not take it ? 

      I should consider cutting down on gluten and seeing if there is any improvements 

      Skin biopsy should be my next test I’ll have to ask to confirm since the EMG did not find anything 

      Thanks for your help

  • pippa58442
    pippa58442 nicole00

    Posted

    If it’s neuropathy; there isn’t much they can do for it other than being offered low dose antidepressants which can cause many other problems including more numbness and tingling!  You could ask for a nerve biopsy/nerve conduction test to see what kind of neuropathy you have.  I have neuropathy in both arms and hands due to injuries and I have trapped nerves too.
    • nicole00
      nicole00 pippa58442

      Posted

      I did a nerve conducting test and it came back normal, my neuro said he isn’t surprised since it might be my small fiber or something like that. The problem he did not go ahead to order any other tests but I would like to.  Anything you do to make your self feel better ? Physio or acupuncture ? Yoga ? Any exercises that help you ? 

      I really don’t want to take any pills unless this becomes worst which I hope it won’t ! So far it’s been episodes.. some weeks better or worst than other

    • pippa58442
      pippa58442 nicole00

      Posted

      There hasn't been anything so far in the chemists that has worked.  So I just have learned to ignore the flare ups and look forward to the hot Italian summer climate when I go on holiday.  Intense heat is the only thing that helps.

    • nicole00
      nicole00 pippa58442

      Posted

      Yeah learning to ignore that’s pretty much what I have been doing. Gotta live your life no matter what and just do things that make you happy. Haha can’t wait for the summer (in Canada) very cold .. 
    • nicole00
      nicole00 pippa58442

      Posted

      Yeah I agree that’s why I hate being cold and love taking hot showers ! It feels relaxing after 
    • anja46452
      anja46452 nicole00

      Posted

      So odd - it's the opposite for me. The cold is my friend. Heat is awful.

    • pippa58442
      pippa58442 nicole00

      Posted

      I’m very sensitive to the cold and I always get sore joints with it too, particularly the ones I’ve banged.
  • darlene47772
    darlene47772 nicole00

    Posted

    Hello Nicole,

    I know how you feel and its no fun and very depressing. I also have had every test and told

    I have a good flow. I already know that!

    My legs hurt  every night for 11 months no sleep that it hard.

    During the day they hurt harder to go up stairs and walk which I love walking.

    I just want want a answer!!! If its  a pill or certain exercise please tell me and I

    will gladly do it.

    Going to a neurologist tomorrow which I'm pretty sure there wont be a answer.

    So I have pretty much decided I'm probably going to have to live this way for the rest of my life.

    I'm tired of going to doctors never have like it.

    I just don't understand why there is not a answer. No one likes hurting.

    I see that you are looking for a answer also.

    Hope your feeling better soon and that someone will help us.

    Sincerely, Darlene

     

    • kennyatw
      kennyatw darlene47772

      Posted

      Ask about baclofen and carbomazepine, I am taking both of them and they help with the pain somewhat but not very much, there are days I would love to cut my feet off
    • nicole00
      nicole00 darlene47772

      Posted

      Yup I do know the pain, living with this pain for half a year... thought it will go away on its own but it didn’t.. plus not sure how and why I got this from since I always thought i’m healthy and fit. 

      I heard acupnature, physio May help so I am going to look into that, and try to get a nerve/ skin biopsy. 

      If you find some answers please let me know- if you get some advice on anything that might make you feel better please let me know 

      Nicole smile

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