Hello,

I came upon this website in search of a forum to get advise. I'm not doing well, I will do my best to explain myself as clearly as I can. At the moment I am getting almost no relief for my neuropathy and am at a loss of what to do, other than wait and suffer.

I am 26 years old, for many years I had a light tingle in my legs where I would have trouble getting comfortable at night sleeping or watching a movie. I did not have numbness or burning pain in my legs however. It was like a minor irritant, I would shift my legs often and just complain about it. In January of 2014 I injured my back during a huge snow storm at home shoveling and using my shitty snow blower that was electric, and made it harder actually.

I connect the back injury because after that back injury I had full heavy numbness knees to toes after that day on January 6th. I suffered with numb legs and horrible back pain for many months, it put me out of work and I usually do work part time. I am autistic as well and obsess about all of this.

I saw a chiropactor for my back in May of 2014 and then a neurologist. He diagnosed me with a mild bulged disc and peripheral neuropathy but he didn't know why or what caused the neuropathy. He tested me for diabetes and found I didn't have diabetes. I am also not overweight. I previously thought of myself as healthy. I was told my b levels were fine.

I spent most of last year suffering and several months in physical therapy for my back. That helped my back and I take norco 500 for the back pain. The numbness kept getting gradually worse though. I have trouble standing for more than a few minutes.

I am not able to find proper medications that work for my neuropathy. I tried requip for one week and it made me feel nauseous for several hours each day like I was gonna puke. Next I was on neurontin for five months. It would work for awhile and then my body seemed to adjust, I would need a higher dose. I was getting horrible head aches from neurontin and at one point my neurologist sent me in for a brain mri. When that came back clean, I thought it may be the neurontin and stopped taking it for a week, my head aches heavily subsided.

Next I was put on lyrica, and got even worse head aches on a low dose of 50mg one a day. Finally I am trying trileptal and that is giving me horrible head aches too, seems to make me feel like my teeth are vibrating when I talk. I do not like these anti seizure medications and am seeking some relief as they make me feel so sick.

I want to know why I have neuropathy. So I getting in to UOM's Peripheral Neuropathy Center. I hope they can provide me with more answers. My neurologist doesn't speak much, I don't know if it truly is a mystery why I have neuropathy or he just won't look deeply enough.

I also want to add and I am not exaggerating. I got oral surgery for three impacted wisdom teeth on January 28th of this year and after that surgery wow did my symptoms get much worse. Everything got way worse, my legs got way more numb. I also started getting upper body numbness in my hands, arms, and am having periodic facial numbness in my lower lip, jaw and throat.

I believe they aggravated a nerve in my mouth. It seems that made my neuropathy flare up even more. I have noticed weird pains. I have pain in my right and left knee caps at times during bad episodes, pain in my left ankle and when my knuckles hit warm water. This comes and goes.

I am very depressed and frustrated cause my life has changed a lot and I don't feel very young. I hope to get surgery if I can pin point the problem because I don't wanna live like this. It sucks that I cannot take proper relief for my neuropathy and I am open to suggestions for relief beyond the anti seizure medications.

I hope to find out more about neuropathy at the specialty center as my current regular neurologist doesn't speak much and I am confused about why this is happening.

Thanks for reading.

its hard its a 50 50 with me after I laydown im like ok are my feet going to start tingling or am I going to sleep keep on keeping on and good luck

Welcome dustinc.

Welcome bosshogg.

Thank you for the welcome!

I am getting nauseous off trileptal and the same head aches as before. Today I was walking around feeling like I had no energy and was just feeling like my chest was hurting so bad, not sure it is trileptal. I assume so, I was wondering what other people take for their neuropathy relief and what they have had success with.

I am also on the autism spectrum as is my eldest son. We have a hereditary form of neuropathy, my sons are 27 and 30. I can understand how frustrating it must be for you as neuropathy is often a very hard thing to diagnose. Unless it is a hereditary form, caused by diabetes or alcoholism, or due to a compression as yours may be many people have to settle for a diagnosis of idiopathic or unknown origin. Not having a clear diagnosis would have driven me crazy as I really need outside confirmation to feel "justified" about my disability. I am very thankful that I have clear test results that indicated the severity of my disease, crazy as that sounds. My sons know what to expect because they see how I am. Neither have severe pain as yet, both have hands and arms affected, only one has numb feet, the other has weak, unstable ankles.

Living with uncertainty is a reality for many neuropathy patients and it is very hard for people like us to tolerate as nailing down everything we can in life is one of the ways we cope with the things we can't control, mainly other people and our reactions to them. My son plans every day, week, month, and year in order to feel a sense of control over his life. I can empathize with how disorienting this must be for you and the temptation to obsess over it.

As facile as this will sound, please try not to let your life be entirely taken over by this disease. The sensations which seem so overwhelming may lessen over time or retreat into the background as you become used to them. As you pursue a diagnosis they may find a nerve compression is at the root of your problems and that can be fixed. Some of the supplements discussed on these forums may be able to help. I have found that walking on soft trails, not tile or asphalt, really improves my pain levels and functionality. Physical therapy has helped keep some range of motion in my ankles and arms.

Pain relief for neuropathy is, at its best, incomplete. Because it is a disease of the nervous system there is no 100% effective way to shut it off. 50 or 60% reduction in pain levels is a great accomplishment. It is also a trial and error process, which might be frustrating for you. Neurontin, while widely prescribed as a first line medication, doesn't help everyone and is often poorly tolerated. Some people are able to tolerate Lyrica which is similar. Often an antidepressant is prescribed for its pain reducing properties. Opiates are a last resort and in someone your age not recommended because of the long term drawbacks, but they do help in some cases.

You should learn a lot more once you are seen at the university hospital. Do you have a family doctor or therapist that is familiar with your situation? Is anyone aware of your anxiety about your condition?

Hello Dustin, a mylogram was the test that the Neurosurgeon ran just before he told me that there was nothing that surgery could fix. I had mild numbness under my toes from playing games with my diabetes. Then I had a car accident and had a hard shock to the knee and right hip. Three days after the wreck I could tell something was going on. Your snowblower incident may have caused trauma. Let me clarify, first I was a bad patient for diabetes, then accident, then Mylogram and Conduction study. So I am a believer that trauma can have far ranging effects. (search Double Crush Syndrome). Mylogram is not bad test, they pressurize spine to see if you have leaks, if you leak, candidate for surgery, if watertight, no surgery.If you use the search function here you can learn much but it is early for you and try not to worry about things that have not happened. Good Luck, Ken in Texas.

That sounds rough, dustinc. I'm sorry you find yourself here. You might have a glucose tolerance test to see if your blood sugar rises too high after meals, even though you test negative for 'diabetes.' This condition can cause PN. Also did you have your vitamin B12 level tested? You can just start taking B12 as methylcobalamin, 1000-5000 mcg per day, such as Jarrow's. That's a good idea to see a clinic that specializes in neuropathy, otherwise neurologists don't seem to know much about it. Keep a positive outlook, keep yourself healthy, and believe that you will heal. A healthy vegan diet, exercise, and meditation have helped me.

See here: https://sites.google.com/site/basicpoke/Home/neuropathy
There is a list of supplements that have shown to help people with PN. If you can't see that page then let me know.

Do you have any history of such pain or any family history of it? If not, I would lean toward this being acquired due to a toxin or a deficiency, rather than being hereditary.

Good stuff I have found on healing and how the body works, generally the stuff you won't hear from an MD:
Podcasts at: www.extremehealthradio.com (or iTunes)
"John Bergman" on youtube
Ron

Hi Dustin,

Sorry you find yourself here.

I'd like to reiterate Ron's suggestion of requesting an Oral Glucose Tolerance Test. I definitely am on the diabetes spectrum despite having perfectly normal Fasting Blood Glucose and A1c results. My problem showed up on the Oral Glucose Tolerance Test as well as home monitoring. If I eat a high carb meal, my blood glucose remains way too high for hours. Still, all my diabetes screening values are normal.

I personally feel anyone who ends up with an idiopathic neuropathy diagnosis should get this test. I know Johns Hopkins is currently doing a clinical study on the effects of even mildly elevated blood sugar and neuropathy. Second one down...

http://www.hopkinsmedicine.org/neuro...inical_trials/

I should add, though, that I have no idea if this is the cause of my neuropathy or not, but it remains a possibility, so I'm taking corrective action with my diet in case it is. Either way, it's good I caught the insulin resistance very early.