My Neuropathy

Since my last post, Manic Monday, spurred a lot of interest on the topic of neuropathy, I thought I would share my experiences in hopes that they help someone else.

DISCLAIMER: I am not a MD nor associated with the medical field in any manner.  This information is based solely on my experience.

It all started about 2&1/2 years ago.  At first it was just a light tingling in my fingers and toes that would come and go.  Since I had been previously diagnosed with multiple sclerosis, I thought it was just a relapse. I thought, “Great, my first relapse in seven years. Must be all the stress I’m under.”  But then it started to happen more often.  Within a month, I had full-blown peripheral neuropathy: severe pain in my legs, temperature regulation issues, tingling, etc. Within two months, the numbness started.  It began with the side of my big toe on my right foot.  I remember this because I was thinking how it was the furthest body part from my heart.  The numbness spread, encompassing all of my feet, ankles, and eventually spread up my legs.  After a year and a half, the numbness was up to my knees.

You can imagine the terror I felt the entire time.  I’ll try and give some description as to what it feels like.  Imagine a burning, searing pain in your feet.  Like walking on hot pavement in the summer times a hundred.  The pain doesn’t just feel hot, it feels electrical. I also occasionally get stabs of pain which feel like someone has taken a spike with a small, sharp head and slammed it into my toe.  These stabs occur randomly, and are so sharp and shocking that I have been known to cry out, and even remove my foot from the gas pedal.

There’s also the cold.  My feet are constantly cold.  I’ve had problems with cold feet for most of my life.  But now my feet sometimes get really cold – like ice.  Your feet can sweat and be cold at the same time – it’s the weirdest thing.  If you manage to get them warm, that often triggers the searing hot pain.  But there is another kind of cold.  It’s a bone deep cold.  I remember walking down the hallway one time thinking, “this is the strangest sensation.  Something is not right.” (Brilliant deduction, huh?) This feels like is your bones have turned to ice water.  The whole leg doesn’t necessarily feel cold, but the bones are deep and frigid.  It’s more like an ice cold water than pure ice because you feel a little “sloshy” and unsteady. Peripheral neuropathy also causes problems walking and you will trip if you try to walk too fast.  Good comfortable shoes are essential for keeping your balance and to prevent pain.

I almost forgot the deep pain. The surface can feel fine (or most likely is numb) but there is a deep pain. Like your bones are crying out for mercy.  It reminds me a little bit of when I was a kid and the doctor said I had “growing pains” in my legs because of a growth spurt, only this is much more severe.  I had it in my shoulder and chest one time and went to the ER.  That time it felt like the muscles as well as the bones were in agony – I put it as an 8 on my pain scale.  (A 10 is having your hip put back in its socket and waking up after a hysterectomy.)  At least I know my heart is fine.

Lastly, there is the numbness. The numbness feels like it’s on the surface.  In my case, it’s not so bad that I can’t feel a pin or a scratch but I still have it.  When it was up to my knees, I didn’t even want to shave my legs because the sensation was so creepy.  Now it’s only in my feet, from the balls of my feet to my toes. So I both like and hate pedicures.  The warm water and foot massage is wonderful, but I can’t let them work on the balls of my feet because the pumice stone is painful. The sides of my toes and between my toes are partially numb.  It feels like there is sand between my toes.  At the time it was spreading so rapidly, and in combination with my other symptoms, I was convinced I would die within a few years.  Since they have both receded significantly, the absolute terror I lived day to day has also receded, but I still remember it and dread the day it may come back.

There are many causes of neuropathy including diabetes (most common), vitamin deficiencies, toxic chemicals & medications (for example, cancer treatment), and more obscure diseases.  However, 60% of all neuropathies are deemed idiopathic.  What I have described here is peripheral neuropathy (PN).  There is also autonomic, optic, audio and others.  PN is the most common. It can be difficult to find information on the web regarding neuropathy unless you start looking specifically for diabetic neuropathy. I’ve included some links below.  The only way to treat PN is by isolating the underlying cause and treating that.  Certain medications are used to help treat it such as Cymbalta, Lyrica, Neurontin, and topical creams, but those medications are only addressing the symptoms (pain) and not the underlying cause.  Studies in Europe have concluded that alpha-lipoic acid helps to aid in recovering nerve function.  It also lowers glucose levels.

I’m still a medical mystery.  It’s unclear why my PN hit so hard, so fast, progressed so far and then receded. This is NOT typical. My A1C (diabetes test) was under control within 3-6 months. It’s possible that I had a MS relapse that exasperated my symptoms for a period of time. There was a lesion found on my t-spine, which may or may not be related to MS.  Since my spine had never been imaged before, there is no way to tell if this lesion was new or old, so I still carry the diagnosis of “probable” MS.

This is my story.  I hope someone finds it valuable.


Mayo Clinic: http://www.mayoclinic.com/health/peripheral-neuropathy/DS00131

Medscape: http://emedicine.medscape.com/article/1170337-overview

National Diabetes Information Clearinghouse (NIH): http://diabetes.niddk.nih.gov/dm/pubs/neuropathies/

WebMD: http://diabetes.webmd.com/diabetes-neuropathy

American Diabetes Association: http://www.diabetes.org/living-with-diabetes/complications/neuropathy/

Alpha-Lipoic Acid: http://www.umm.edu/altmed/articles/alpha-lipoic-000285.htm
http://www.ncbi.nlm.nih.gov/pubmed/10595592

 

© Manic Monday (manicmonday123). Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Manic Monday (manicmonday123) with appropriate and specific direction to the original content.

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12 thoughts on “My Neuropathy

  1. Thank you MM.

    I have lived with type 1 diabetes for almost 32 years. So far, no neuropathy. Thank the Good Lord above, because my blood sugars haven’t always been where they need to be.

    While I have always know about diabetes peripheral neuropathy, I never really understood how it worked, nor what it is like to live with it. I can only imagine how hard and interfering it must be.

    I’m glad for you that it receded, which, like you say, is a curious thing. Maybe with mysteries such as that, it’s perfectly fine to just be thankful and not ask too many questions.

    What you’re doing, by telling your story, and taking the time to explain and describe it, is a great service to so many out there. I appreciate it.

    • I wish I could say that the neuropathy was gone, but I still get “bleed through” pain even on the Lyrica. However, the pain is usually on the 1-3 scale instead of 4-6 scale without the medication.

      Being a scientist, I always want to look for answers or at least plausible theories. My current neurologist suggested that my symptoms were exacerbated by my bipolar illness (see my first post In the beginning for details.) However, he did admit that my neuropathy is real, and confirmed by EMG (description below) results. However, sometimes you just shouldn’t look a gift horse in the mouth.

      • I should also comment that I do believe there was some physiological condition that was causing the neuropathy to spread so quickly and then recede to a manageable state. For all I know, it could have resulted from something I was exposed to at work. But for now, I’ve stopped looking for answers and I’m just glad it has gotten better.

  2. I also have neuropathy, none know why. I recognize everything you write here. Im having an MTR at monday. Im looking forward to get to know what it is, because I really hope they WILL fins something, to help me get cured.
    Thanks for sharing.
    Maggie

    • I’ve not heard of a MTR before. I’ve had an EMG (Electromyography) test done before, which basically looks at the rate messages travel from your extremity to your brain and back. Damaged nerves take longer to transmit signals, hence why you might trip. (Your foot isn’t where your brain thinks it is because the muscles didn’t get the message in time.) EMG is used to identify a lot of conditions from neuropathy to carpal tunnel syndrome.

      Good luck with your test on Monday. I hope they can help you. 🙂

      • Maybe it´s my lack of english. What I had in mind with MTR is like a x-ray, but it is done with a magnetic x-ray. Using that the doc can see all changes within soft tissues, as in the brain. It´s not the same as a tomography. Oh, I checked… the dictionary. MTR is really called MRI 🙂

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  4. Lady, you are some kind of something! I’m glad you wrote this. Nobody takes those things into consideration. I have never considered neuropathy as a possibility. And MS? Again, you are really something! A walking legend!

    • I’m a walking medical mystery is what I am. No one goes seven years without a MS relapse – especially when untreated. Not a single new lesion in the brain. There’s a lesion on my t-spine, but is it old or new? No way to tell because I never had my spine imaged before last year. My old neurologist said to me, “It’s almost as if you don’t have MS.” But there was a positive hit on the spinal tap in 2003. They could always do another one to check, but I will NEVER go through that hell again. (Another story.) I’m an oddity in so many ways, but medically most of all.

      BTW, Thanks for the compliments everyone. I’m really glad I could help. 🙂

      • I’ve heard what hell a spinal tap is. Enough said there. They wanted to tap me to make sure I didn’t have an aneurism or something. I told them, “Ohhhh no, no. If the CT came back okay, then I’m okay.” It was a little bit of a gamble, but I knew it was migraines.

        Seven years is a long time! My cousin has MS, and he was diagnosed at 17 when his vision went. He is getting treatments, but he knows that his outlook is pretty bleak. I feel horrible, like he’s already resigned on life. Hopefully, if I share your story, maybe he’ll find some hope.

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