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.

I would rather there not be a link between nerve disorders and autism, because that is scary to me but I know there likely is. Glad your son gets relief from famvir and gabapentin, never heard of recurring shingles till now. My grandma had them a long time ago.

I was told by my local neurologist that he doesn't know what else to give me for neuropathy, he referred me to UOM and is just basically telling me to wait for the time being. I see his point but still wish he'd give me another med to try in the mean time. I saw a new family doctor today and got a few blood tests, like getting my thyroid checked.

I appreciate your positive thoughts. I wish the same for you and your sons.

I am sure once I get to UOM since it is a huge center I will find out about a lot more.

I would get tested at your new neurologist's office for B12 deficiency. Vegans can have serious deficiencies in B12 levels, since they don't eat animal foods. You should get the numerical result and see if it is below 400pg/ml. Labs today still report levels below that as "normal", which is dangerous.

Vegetarians also get low in zinc and methionine (a sulfur containing amino acid). The phytates in vegetables can complex zinc in the GI tract and make it unavailable for absorption.
Low methionine leads to low SAMe levels. SAMe is a methylation carrier for methyl groups to make neurotransmitters.

It might be useful to get the DNA testing for methylation as well.
If you have a MTHFR genetic error, the little B12 you are consuming may not get activated to methylcobalamin. Some of our posters here have had this test and found they had this problem.

Here is our B12 thread:
http://neurotalk.psychcentral.com/thread85103.html

If you are not eating animal products, you need to supplement B12. And if you have PN too, then BONUS, you need it for that too. I am not familiar with the zinc and methionine problem, should check it out. Thanks.
Ron

Yes, do check the zinc issue out. Zinc you know, is secreted in seminal fluid and an average adult male can lose up to 5mg in each ejaculate. Men lose zinc this way, and women lose iron for obvious reasons.

Zinc is most plentiful in seafood and meats.

After testing, one of the best zinc supplements should you need one is OptiZinc. It also has copper added to it, to avoid losing copper.