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?

My neurologist who I see regularly knows about my diagnosis of autism. He doesn't talk much though and after trileptal failed, he recommended me to UOM to see their Neuro and Muscular Clinic. The downside is that will take a month to get in and I called recently today for another medication to try but he wants me to wait till they see me at UOM. It is easier said than done, as I have no relief. I have been taking norco 500 for my back pain and that helps with that but I only got relief for the neuropathy from the neurontin, lyrica and trileptal. Basically, my doctor doesn't want to prescribe anything more right now.

I am am seeing a new family doctor next week, since my current one sucks. This lady I am going to see should be nice, maybe she can help me in the mean time.

I see what you mean, it is hard to pin down the cause if it is not from an injury or genetic like diabetes or from alcohol. I am bothered not knowing, so I get your relief in knowing the cause. I am personally hoping my back injury is the cause and that I can maybe get bulged disc surgery and that it would alleviate the neuropathy. That is my hope anyway.

I am also sorry you and your sons all have neuropathy. Diseases are miserable. I myself have been battling depression and have found it hard to stay upbeat. I'm trying though.

Right now what bothers me most is not having relief for neuropathy.

I did do physical therapy for my back last year, which it helped my back a good deal but none at all for my neuropathy.

Of the four medications I tried, lyrica provided the most relief but it gave the worst head ache of the three. Neurontin did not bother me initially at low doses, but after awhile I got immense head aches. Every month or so the dose would work less, then my dr. would have to increase dosage. Trileptal, I only took for three days and did not get much relief if at all.

I am gonna get a call next week to get an appointment at the university, but it will be a few weeks after the call. Hoping to get in soon!

I forgot to say that it is interesting you and your eldest son are on the autism spectrum. I have been told there are some doctors who link autism to neurological disorders but I am unsure but I have given it thought.

I have heard that too, and I think there is something to it. My son also has a rare recurring form of shingles which first struck him when he was only ten years old. It affects the nerve that goes from outside corner of his eye to his ear and he gets blisters on top of his ear. It is extremely painful but responds to famvir and Gabapentin. Outbreaks seem related to stress, which he handles poorly.
I hope that you get some answers soon, and that they take your pain seriously and work on finding relief.