Foggy's "Invisible Illness" Support

Possible early Peripheral neuropathy symptoms or just anxiety?

Hello, I'm new to this in the hopes that someone can help or shed light/insights. I'm a 28 year old female and for the past month I have been having pins and needles sensation all over my body. This all began after a very stressful time in my life, and began with my left foot feeling as if it was vibrating 24/7, followed by the same sensation going to my left leg. I also feel it on the right side, but not as predominant. I also have burning/sharp/painful sensations on my face, shoulders, hands, fingers, feet, etc. Some of my fingers feel as though they are vibrating, too. I'm free from numbness and my balance is perfect. I went to the neuro and had MRI of the brain/cervical spine, as well as blood work. All came back normal, including my B12. I am however, deficient in Vitamin D. My physical neurological exam is also normal. I suffer from extreme anxiety and have no other medical issues. I've noticed that when my anxiety is high, the burning of my skin will worsen. Any thoughts if these are early symptoms of peripheral neuropathy? I also feel as if I'm getting intense chills on my legs, with no visible goosebumps. The doctor is recommending an EMG/NCV in 6 weeks if symptoms persist, although I'm not sure how useful that would be since my physical exam is normal. Needless to say, my anxiety has been overwhelming, more than usual and Dr. Google isn't helping. Thank you once again!

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Hi there, so sorry you're having such a difficult time. There's a new understanding of pain being promoted & I would strongly recommend reading any book by Dr John Sarno or the Great pain deception by Steven Ray Ozanich. You could save yourself years of pain in the future, if you could just get your head round what they're saying. Basically, pain is the brain's way of distracting us from strong emotions that we repress. It's not particularly easy to read, because the ego strongly resists what's being said, but I think they're definitely on to something important. I regret to say I`ve been searching for answers for almost 30 years & I reluctantly see so much of myself in these books. There's a type of personality that is particularly prone to dealing with difficult emotions by repressing them into the unconscious & the brain diverts attention from them by producing pain. Enough said! Loads of us who have been diagnosed with PN are desperate for relief & basically the medical profession don't have the answer for nerve pain, although that doesn't prevent them trying all sorts of different prescription drugs. The fact that you are as young as you are makes it hugely important that you tackle this problem with as much intelligence & honesty as you can. You have your whole life ahead of you & you definitely don't want to spend it in increasing pain. Good luck & may you be a day nearer to finding your answers. Warmest best wishes, Chris

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Thank you so much for your response. I’m sorry that you too have gone through such a turmoil, both physically and emotionally. I believe that there is a strong connection between our emotions and nearly all diseases. I will definitely purchase that book, and absorb all I can from it. Thankfully the pain isn’t constant, it randomly comes and goes, sometimes for a few seconds, other times for a few minutes.

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Do you know the so called normal result for your B12 ? Anything below 500 can be the cause of neurological symptoms - see link below for the list of neurological symptoms caused by LOW B12 .... Doctors often say normal when they mean - in range - but it is where you are in range that is key. Remember vitamins cannot be patented so no money for Big Pharma. I live in Crete and can buy B12 OTC so inject myself weekly.

b12deficiency.info/signs-an...

Look at the videos on the above link - under the heading Films - on the link above.

I am usually on the Thyroid Forum where so many suffer with Low B12 - including me ! You are legally entitled to have copies of all your blood test results - so you can monitor your own health and check what has been missed :-)

Dr Sarah Myhill thinks everyone over 50 should have B12 injections as stomach acid reduces as we age causing B12 levels to drop. Website in her name.

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Thank you for your reply! I actually read about the importance of b12 and nerves, so I began taking some a week prior to going to the doctor. So by the time I had my bloodwork done, b12 was in my system and it showed up as being 1,497. If I was ever really low, I guess I’ll never know. But I don’t plan on stopping it!

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I would not sell short the insight to be gained from your upcoming EMG/NCV test. I believe most with PN will show definitive results on the EMG/NCV test. I did in 2013 upon initial diagnosis, and, although at that time my initial symptoms were a partial numbness in the balls of both feet, it has spread, to some extent, to my lower legs, I still have no tingling or pain. I just had my latest battery of blood test results presented to me this week = nothing for my Dr. (a neurologist) to hang his hat on.

Looking at all the posts related to PN, I have prepared a list of Qs for my Dr. including what he is calling "normal range" not only in vitamin presence but in other components. I think Marz's post may be on to something with the B12 and Vitamin D references. My chiropractor told me of a young woman he became aware of who had debilitated to the point of requiring a wheel chair - before it was determined she was deficient in B12. (she was not the chiropractor's patient). My neurologist and others on this site consistently refer to B12 and D3 levels. My other Qs to my neuro are, what determines the "normal range" in ME as opposed to the remainder of the human race; asking him to pay close attention to that since I have been on daily supplements of B12 and D3 for the past 45 days leading up to my tests; considering statins can cause neuropathy, asking him to look at my statin generated markers because I have been off cholesterol reducing statin drug for 45 days - as well as my omniprazol for acid reflux. My point being, are my results still "normal range" considering the supplements I've been taking and the medicines I have suspended?

As stated in my introductory post, my next step(s) are spinal tap, nerve biopsy from foot and a request for 2nd opinion from Barnes Hospital in St. Louis, MO. It is in my provider network and Barnes is rated as one of the top ten neurology providers in the U.S.

As an update, I noticed that while I was walking in the woods last week, I stumbled / stubbed my left foot several times. I was carrying deer stands, equipment, etc., and was on uneven ground with roots, etc., protruding. However,. I didn't do that in September when I erected my stands. Also, I did not stumble with my right foot...only my left. My symptoms are more pronounced in my left foot. I also caught my left foot on a door sill walking into a mall this week. The kicker, my neuro keeps asking me if I stumble or shuffle while walking. Well...not until now. Thanks / RCS

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Wow, you’ve been through quite a bit. My heart goes out to you and I hope this terrible disease doesn’t progress for you. I hope you continue to find relief. Thank you for reply, you’ve opened my eyes to things I should ask my own doctor and perhaps undergo the EMG. Is this exam at all painful? At first the doctor suspected MS because of the pins/needles on my face and the burning, but the brain mri showed clear so now back to square one. I even feel the sensation on my ears at times!

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In my experience anxiety and stressful situations definitely make things worse. It may be worth trying a mindfulness app or exercise to help with your anxiety. Most of all dont worry about the pins and needles. I am sure your doctor will find anything serious and if he hasnt it is good news.

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Thank you, Valerie! I’m a hypochondriac by nature and prior to this I had self-diagnosed myself with Sjögren syndrome due to dry eyes, but thankfully that was just a scare and then all these new symptoms began. Sending light + love to all.

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I didn't find either the 2013 or last months test painful. You do receive many CONTROLLED jolts of electricity during the 20 min test, and the Neuro also stuck me with a few pins, but all I did was involuntarily flinch when I received electrical contact. Since my symptoms are in my feet and lower legs, that's where he tested and stuck me. I'm confidant that you'll do great. Good Luck - I'll keep you updated.

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Hi everyone, wanted to update. I had the EMG/NCV and all came back normal, which is a great sigh of relief! I will keep searching for answers as to what I'm feeling. But want to thank each and everyone of you for taking the time to reply. Sending all my love and positive vibes to all of you.

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Glad to hear that, though I hope they can determine the cause of your pain.

My tests show B12 of 1400+ as well (after being on supplement since 12/30/17, metals check = normal, nothing else is standing out.

On to Barne's Hospital, St. Louis for more specialized neuro.

Again, hope you get an answer to your discomfort.

Rory

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I think the EMG (I was thinking it was the EMS but I could be wrong)needs to be done because neuropathy can't be actually diagnosed with a physical exam. I have it on both legs from the knees down and on the outer aspect of both feet. Even telling the Dr. that it burns so badly from just the sheet touching it but still they would not say it was until I had the EMS test. But it would be highly unusual for it to start affecting the whole body at one time. Mine started about 6 years ago just one the outsides of my feet and toes except my big toe is not affected so the nerves on the sides are the most affected, then it had gradually spread to my lower leg and on occasion my knees.

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I know now why EMS keep popping up in my head. My mom was pushed down really hard by another patient in a nursing home and her hip was badly broken. I got a statement and from where she was transported from one hospital to the next and back and forth there were charges listed for EMS Emergency Medical Service. Sorry I must have PN of the brain.

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Aviva, you're very kind for replying, thank you. I'm so sorry that you're going through so much. I admire you for making it through this. I suppose this neuropathy truly cannot be diagnosed purely from a physical exam. I suppose I'll have to wait for my EMG to have any idea as to what is happening. The symptoms persist, and honestly jump from different body parts. And I can see why you were confused with the EMG and EMS (thanks for clarifying!). I truly hope your mom is doing better. Sending all my love to you.

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I have had similar sensations for the past year. All my tests have come back fine and the Neurologists think that my problems stem from the heart medication that I take and have advised that I stop taking it....Catch 22.. However, this hasn't improved things but my own feeling is that the symptoms are caused by anxiety. Regards Peter

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Thank you, Peter! Even though it's terrible that the symptoms persist for you, it's reassuring to hear that nothing has been found. Has the doctor excluded Small Nerve Fiber Neuropathy? I know that's a tricky disease to diagnose, as nothing would show up in the EMG. I think it can only be diagnosed through a skin biopsy, but I dunno too much about it. Anxiety really consumes me at the moment, so my mind is all over the place with trying to figure out whether or not what I have is a disease, or if it's physiological. Let's hope it's the latter. Are there any techniques that help you cope with your anxiety? I try to meditate, but my mind is too crazy at the moment to even attempt to quiet it.

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Hi littleboy96. I have had and go through all the symptoms you described. think I have had every test available for Peripheral prob.which is apparently cann't be cured.We can only look forward to some form of comfort .My doctor has prescribed several drugs.After 5 years I am getting some comfort from Pregabalin((Lyrica).Iread Healthunlocked regular hoping anything better

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I’m sorry you’re going through this, too. I firmly believe there’s a cure for everything, although modern science can’t say so because there isn’t a magic pill that they know of which will cure this. Were you diagnosed after an EMG/NCV test?

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I have had every test associated with this problem and none of them found a location where the pain may have been sourced.I just keep reading these pages hoping for someone to come up with that magic pill.Thanks for your comments

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Hello!

I'm not really sure if this is the correct forum for my problem but if not please tell me where to go, so to speak!

For a few months I've been having an internal shaking, sometimes I wake up in the night with it but it happens at other times of the day too. It normally is around my abdomen and chest but sometimes when I lie in bed it can feel like it's my whole body down to my feet. I ask my boyfriend if it feels like I'm shaking and he says no! I also get palpitations and a cold feeling inside. My feet and hands are cold, they always have been but they seem to be worse of late! It's a very odd feeling :-O I have difficulty concentrating at times too and feel wobbly plus tired.

I'm actually booked into my doctors on Thursday but I'm worried as it's the first time I've been to this new practice and I struggle getting my symptoms across sometimes and kind of downplay how I feel (not helpful but I guess explains why I've left it a few months!).

I just wondered if anyone had experienced anything similar, I did read about Vitamin B 12 deficiency so I bought some tablets, I've only been taking them for a week now so not long. I don's think they've made a difference as yet.

Best wishes

Nicky

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Hi Nicky, I'm definitely no expert and I'm glad you're going to the doctors. Have you been experiencing anxiety/stress? What you're describing sounds an awful lot like anxiety. It can cause so many symptoms in our body, including the ones you've mentioned. I know it's difficult, because the more symptoms you have, the more freaked out you tend to get. Please keep us updated!

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Hello! I'm sorry I've only seen your reply today, it didn't say I'd got a reply. Thank you for your reply, I can tend to get quite stressed, especially at work. It happens when I'm not at work and I think I'm relaxed, maybe I'm not.

I've been to the doctors and they sent me for a blood test, then asked me to go in for a repeat blood test. I've now been waiting to hear from them for over a week, hopefully I'll hear something soon!

Hope you're getting on ok, thank you again for your reply.

Best wishes

Nicky

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Hello I am going through the same thing,it is some type of Neuropathy.I just spent 4days in the hospital over a seizure.They discharged me w/out me walking.I had PTand Ot in my home for 2wks.I met back to my Neurosurgeon because I thought I was leaking again,he said my images were normal.I told him if I was my leaks no ,then why can’t I walk and why do I have all this pressure in my neck and spine.He said I could have CCI and gave me 2cervical blocks.After 6days I started walking w a cane but still have some pressure in my neck.I haven’t work in a month but now I’m working part time w restrictions. I still have no answers to why I couldn’t walk,but hopefully I will get answers w my new Neurologist the 13th.To make a long story short,get a second opinions because what you are experiencing is real and I know it because I went through it and it’s awful.Goid luck and let me know what they find out.

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