| Living with neuropathy is not the easiest thing in | | | | peripheral poly neuropathy". Demyelinating means |
| the world. Especially if you had any kind of active | | | | that my body is stripping the protein sheath also |
| life before the neuropathy took effect and | | | | from my nerves, which exposes the nerves to |
| changed everything. In my particular case I wasn't | | | | the internal body, where the nerves short out |
| all that active in the first place. I spent most of | | | | causing the numbness and tingling feelings. Once |
| my time sitting in front of the computer staring | | | | the sheath has been stripped off completely, it is |
| at a screen using the keyboard. So when my | | | | my belief that my body begins to attack the |
| feet started tingling or my legs grew numb, I just | | | | nerve itself destroying it resulting in the complete |
| thought I was sitting in my chair wrong and I cut | | | | loss of feeling and eventually motor function. I've |
| off the blood flow and my legs or feet were | | | | always knew I had an overactive immune |
| going to sleep. It should have been a clue that | | | | system, I just never thought it would work |
| after a while, they really didn't wake up. | | | | against me. |
| Mine started out as a gradual feeling in my feet. | | | | The "peripheral" portion of the name refers to the |
| They felt like they had just starting to wake up | | | | fact that it's currently affecting only my |
| after falling asleep, as an example, from sitting in | | | | extremities, the peripherals being my hands my |
| a chair too long. You know, that odd feeling that | | | | feet, so between you and me lets hope it stays |
| you get when they just start waking up and the | | | | there and doesn't spread inward. |
| tingling makes everything you feel, feel 10 times | | | | The "Poly" part of the conditioned me refers to |
| worse. When something touched my foot or I | | | | the fact that both my motor and sensory nerves |
| managed to step on something on the floor, the | | | | are being affected by the condition. This means |
| feeling was magnified by the tingling, making it feel | | | | that eventually I will lose control of my muscles |
| much more intense. | | | | themselves and I will end up in a wheelchair or |
| As time passed, the tingling gave way to a slight | | | | worse. The worst-case scenario here would |
| numbness. Actually the tingling moved up my legs | | | | actually being losing control of my chest and/or rib |
| didn't causing the lower parts my shins to tingle. | | | | area, causing me to have to go on life support |
| This wasn't near as bad so I didn't think much | | | | for the rest of whatever. But I try not to think |
| about it. Then the pain in my feet started. | | | | about that as the risk of this is very low. |
| Whenever I walked my feet no longer felt numb, | | | | I've noticed over a period of time that increased |
| but like I was walking on a gravel road barefoot. | | | | stress in the job and/or my personal life can |
| Even when I had shoes on. It felt as though I | | | | cause the disease to either exacerbate the |
| could feel every piece of gravel underneath my | | | | symptoms or to actually cause it to advance at a |
| foot. Even though I was wearing a shoe and a | | | | quicker rate than it would otherwise. This is what |
| comfortable stock. The feeling grew more and | | | | has been happening to me over the last three |
| more intense. Like each rock that I was stepping | | | | months or so. It is been a very stressful time at |
| on was sticking in my foot almost leaving a bruise | | | | work, and the stress is showing itself in a rapid |
| behind. Just keep in mind that I felt these "rocks" | | | | advancement of my symptoms. For example my |
| whether I was wearing shoes are not. | | | | hands, which didn't used to show any symptoms |
| This is when I decided that it was time to go see | | | | of the disease have gone from a tingling |
| a doctor and figure out exactly what was going | | | | numbness on the back of the fingers to a |
| on with me. I was having a hard time walking, | | | | downright pain in the tip of the fingers, which |
| because of the pain in my feet and I noticed that | | | | intensifies when any type of surface that has a |
| I was stumbling a lot more than I used to, mainly | | | | texture is touched. The best way I can describe it |
| falling sideways and bumping into chairs, tables, | | | | is this-everyone in their life has burned the tip of |
| and you name it. I had bruises and scratches all | | | | their fingers on say a hot pan or on a soldering |
| over my arms and my legs I couldn't tell you | | | | iron in my case, and it left a blister behind. This is |
| where they came from. Actually this part wasn't | | | | how the ends my fingers feel. Like there are little |
| all that bad is kind of like being high without having | | | | blisters at the end of each one and when I apply |
| taken the drugs!! But then, there were the | | | | any pressure, it causes the same type of pain, |
| scratches. | | | | almost a burning sensation. Definitely not a |
| The first person I saw was my family doctor. He | | | | pleasant feeling, especially for someone who |
| did a few quick tests on me and discovered that | | | | types for a living, being a computer programmer |
| I had borderline type 2 diabetes, which he quickly | | | | and all. |
| put me on some medication for and that seemed | | | | The way I'm actually typing this right now is by |
| to clear that up. The Doctor also decided that the | | | | using Dragon Naturally Speaking. I've got my |
| neuropathy was caused by the diabetes, thinking | | | | headphones on with my microphone, and I'm |
| that it was probably diabetic neuropathy. I did a | | | | talking quietly to my computer and it is typing |
| little bit of research on the net (every doctors | | | | everything that I am telling it to. It is a great |
| being the -- the informed patient) and I found that | | | | innovation, however I'm still training it and so I |
| diabetic neuropathy only occurred in patients who | | | | have to go back and corrected quite often. It is |
| had a long term, undiagnosed severe diabetic | | | | getting better as I can see it is recognizing more |
| condition, one that was very much out of control. | | | | and more of my words as I'm typing... or I should |
| Now since I had only been diagnosed diabetes in | | | | say as I'm talking. So eventually I won't have to |
| January before, and this was about March, I | | | | do much correction in it at all. |
| personally determined that diabetic neuropathy | | | | My neurologist has classified me as having a |
| was not cause. I mean after all we patience to | | | | "moderate/severe"case of neuropathy. He told |
| know more than the doctors do right? | | | | me at one point after I was diagnosed with the |
| During my next doctor's visit I approached him | | | | condition, that I could (might, maybe, possibly) find |
| about this and he said yes this was correct, that | | | | out what was exactly causing it if I went out to |
| it usually came from a long-term undiagnosed | | | | Charlottesville and visited the University out there |
| diabetic condition that was uncontrolled and that | | | | and called on a specialist - one that specialized in |
| this may not have been what it happen in my | | | | neuropathies and have him run some specialized |
| case. But he did state that sometimes people got | | | | tests. Problem is the insurance company wouldn't |
| the neuropathy from the delete diabetic condition | | | | cover any of these tests, and the only thing it |
| without being long-term or uncontrolled. But the | | | | would tell me is where it came from, not how to |
| chances of that were very slight. So on my | | | | fix it. So, seeing as how he couldn't tell me how |
| request; he referred me to a neurologist. He also | | | | to fix it and the fact that I have already spent |
| noticed that my hormone levels for little bit out of | | | | $15,000 in the last year visiting doctors trying to |
| whack so he referred me to an endocrinologist, | | | | figure out what was going on, I decided that it |
| as well to get that checked out. | | | | wouldn't be worth it. So at that point, I just |
| To make a long story short (yeah right), the | | | | accepted the condition for what it is, and started |
| endocrinologist found that I had multiple goiters in | | | | taking as many drugs as I could to alleviate the |
| my thyroid and I ended up going through surgery | | | | symptoms so that life can go on. |
| to take them out. Actually they took the entire | | | | At the moment I take Cymbalta and Wellbutrin |
| thyroid out, which made me really happy. NOT! So | | | | for the pain and depression that comes along with |
| now I'm stuck taking thyroid medication for the | | | | it. I recently started Carbitral which is a generic |
| rest of my life. The one part about this that | | | | form of Tegretol to try to help with some of the |
| makes me happy was that they found a | | | | nerve pain as well. Carbitral seems to be doing a |
| micro-carcinoma in one of the goiters. It was fully | | | | very good job. I don't have the stabbing pains |
| encapsulated and well-defined so they weren't | | | | running down my legs, arms and my hands that I |
| concerned about it having spread anywhere else. | | | | used to have, although I do still have that little |
| The borders were well-defined, it only involved a | | | | blistery feeling at the end of the fingers. I take |
| cell or two, and they were able to get it all when | | | | Mirapex for restless leg syndrome, MetNX |
| they took it out. As a result they were sure that | | | | (actually a prescription vitamin complex) for nerve |
| that they'd gotten the entire thing and the no | | | | pain, Primadone for essential tremors, and last but |
| further treatment would be necessary. | | | | not least, I still take Glucophage for my diabetes. I |
| I then started seeing the neurologist who looked | | | | find it interesting that I take more pills in two |
| into my case and started running me through a | | | | mornings than most people I work with are old!!! |
| battery of tests trying to figure out what I had. | | | | I also take all Altace form mild case of high blood |
| After numerous blood tests, making the jump off | | | | pressure. I take Lipitor for high cholesterol, Tricor |
| the table with needles and voltages, x-rays, brain | | | | for high triglycerides. I mainly have to take these |
| scans, and MRI, and a few other tests I can't | | | | because I can't exercise properly in order to work |
| remember he eliminated lime disease, multiple | | | | my levels down properly. I would love to do free |
| sclerosis, diabetic neuropathy, and determined that | | | | weights but without having proper feeling in my |
| the blood flow in my feet and legs was almost | | | | fingers I end up under the weights. I can't do |
| perfect. Basically he could find no reason for the | | | | walking because the more I walked the more my |
| neuropathy or why it would be progressing as it | | | | feet hurt and after a while I end up stumbling |
| was. T'was then that we tried a little more | | | | around like a drunk. I do also use a cane which |
| invasive test in the hopes of finding out what was | | | | helps me in my balance area so I don't stumble |
| going on. | | | | and do things as much which my arms and legs |
| They set me up for a minor surgery and we did | | | | thank me greatly for. It is also allowed made to |
| a nerve biopsy on my left foot. This involved | | | | acquire a great collection of canes! Some of them |
| taking a small piece of nerve out of the heel of | | | | even have swords and daggers in them! I don't |
| the left foot. The doctors told me that this | | | | use those much but I do know they're there! Oh, |
| particular nerve was for feeling a very small | | | | by the way -- just to add insult to injury I also |
| portion of the heel of that foot and normally | | | | see a therapist once a week to help me with the |
| would not be used by anyone (the word | | | | depression and in handling the chronic pain |
| "normally" always scares me). When the surgery | | | | Anyway, the stress at work has let up a little bit. |
| took place, they were supposed to make a | | | | So let's hope that the progression of the illness |
| ¼" incision in the heel of my left foot. They | | | | has as well. I'll keep taking the drugs as long as |
| ended up making a 3 inch incision because they | | | | they make me feel better (At least I'm not on |
| couldn't find the nerve! Turns out it was literally | | | | the painkillers I was last year). I am walking with a |
| too small for them to see easily. When they did | | | | cane right now, that really doesn't bother at least |
| remove it and finally sat down for the testing, the | | | | I don't need two of them to keep me up right!! |
| normal stuff they were supposed to have found | | | | And, as you've probably seen by now, being able |
| was definitely not there! Instead, they found that | | | | to enter words without typing and hurting my |
| the nerve had lost all of its myelin (the protein | | | | fingers is both a boon and a bane. I have a lot to |
| sheath that protects the nerve), and that the | | | | say that I can get out, but at the same time... |
| nerve itself had been destroyed! So, the nerve | | | | VERRRYYY LOOONNGGG |
| was dead, or at very most dying. | | | | AAAAARRRRTIIIICLLLLLESSS! |
| This confirmed the diagnosis of the "demyelinating | | | | Have a great life! |