A life With Neuropathy

 Today's blog post from (see link below) is a very well-written account of this person's life with neuropathy. There is no obvious connection with HIV but many people with neuropathic problems will identify with what this blogger is going through. The symptoms are the things that link all neuropathies caused by other diseases together - those symptoms are very often the same despite the fact that the causes can be very different. Take comfort in the fact that you're not alone.

 

My Neuropathy
Posted on January 20, 2012 by Monday

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 and 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.

http://manicmonday123.wordpress.com/2012/01/20/my-neuropathy/