Seeking Help for Peripheral Neuropathy
 

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. :Wave-Hello:

Welcome bosshogg. :Wave-Hello:

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?

mylogram
 

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.

need guidance
 

Hi,

I am also experiencing numbness, tingling, burning sensation and weakness from back side of my left thigh through my leg and foot for the past 2 years.

This has happened after severe back pain followed by Diskectemy and fusioning done to my L4-L5 position.

can any body guide me to get relief.

Welcome Aravindan. :Tip-Hat:

Hi Aravindan
 

You might go to the people who did your fusion and tell them an update. They may give a referral or start treatment for symptoms themselves. These days the go to drug in the Neurapathy world is Gabapentin. Some find relief to some degree and some have side effects that outweigh the relief. I started at 300mg/day and went up to 900. I have read that some go up to over 2500 mg/day. There is no clear roadmap to relief. Some other basics need to be investigated. If you are low in B-12 or vitamin-D, etc. I quit the Gaba but would go back and try a higher dose if I get worse. Good Luck, Ken in Texas.

For back problems, I really like what John Bergman has to say. See him on youtube. In your case, since it sounds like a spinal issue, I would sure pursue getting the problem corrected at its source, and this may require a chiropractor rather than an MD. You may need some drugs to tolerate the neuropathy pain (if that's what it is) in the meantime. I have found gabapentin and tramadol useful. Other common ones are Cymbalta & Lyrica. As when trying to heal any problem, keep your body healthy. Read lots of posts on this forum, lots of good tips for PN sufferers. Good luck.
Ron

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!

Hello Ken,

I am gonna remember to ask for the myelogram, so thanks for the good recommendation. I did not have leg numbness before my back injury, nor burning pain. I did have a light and tiny tingle occasionally when trying to sleep and would shift my legs often but that may have been restless legs. I did not have trouble standing before my injury either.

I also agree trauma can have far reaching affects. I'm upset cause I've been diagnosed with a mild bulged disc and mild neuropathy but I am not feeling mild at all.

I am gonna ask for that test at UOM.

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.

Hello Ron,

Thanks and yeah it has been stressful.

My b levels were checked along with diabetes, and they were fine. I do take some supplements. I started taking them since last year when this all started. I take a chewable multi vitamin. I also take b12 500mcg one a day, b6 100mg one a day, flax oil capsules for omegas 3s and a few others for other things.

That is interesting you are vegan, I am vegetarian. I have given thought to veganism but that seems rather hard. My girlfriend is vegetarian too and she sometimes cooks vegan meals. I used to cook more, but my cooking has grown lazy with lots of pain issues.

I see the supplements link and will go through it.

The family thing is complicated cause I never knew my dad, he left when I was a baby. So his side of the family is a total mystery. My grandma has parkinsons, but I am not sure if that is a related cause or not. As far as I know, no family has had neuropathy. But I cannot speak for sure since my fathers side is an unknown factor.

I'm gonna give those podcasts a listen, and I am hoping when the snow melts in Michigan I can move around come the spring.

Hello janieg,

I had to delete the link in the quote cause it would not let me post with it under 10 posts otherwise.

Yeah, I am going to take Ron's suggestion and get my glucose levels checked. It is a good idea for you to take corrective action early, it cannot hurt anything. I am glad you caught that early.

I do wonder if eating carbs has anything to do with this.

I am going to check out some of the other threads on this site to see if they are of further help. Thanks.

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 am not strictly vegan (except for Lent this year I am eating no processed food or animal products, except apparently not Sundays since I ate half a cupcake today), but I prepare almost all of my meals and seldom use any animal products. The rest of my family is omnivorous and I have bites of their food sometimes. American food is very tempting (which of course is why it is so successful, 69% of adults are overweight, and 35% of adults are obese). Are you saying you are not vegan only in that you eat dairy and eggs? I don't have any trouble at all avoiding these, assuming that I am cooking for myself, not sure why you would find it difficult. I really like the podcast "Main Street Vegan", and the book. Victoria Moran is a great supporter of veganism and a great speaker. It seems that most of her motivation comes from her disgust at the treatment of animals in the factory farming that we use, but there is a lot of health info as well.

Main Street Vegan podcast -- http://www.unity.fm/program/MainStreetVegan
Susan Voisin's vegan recipes etc -- http://fatfreevegan.com/
**

Ron

Well, I do not eat any meat at all. My main issue with being vegan would be milk and cheese are in so many things, for example coffee creamer. Even the "non dairy" creamer has casein, and I would have to not buy any store flavored coffee creamers. I do not eat egg often or even really like eggs much. I use flax seed as an egg replacer in baking products.

Another example is vegetarian products like morning star, they have egg in most of their products. I like to eat morning star on occasion. I guess those are examples of products I'd not be able to buy.

I try to avoid animal products as often as I can. I do not buy anything with gelatin either. So no marshmallows. I also find their are vegan substitutes for things like marshmallows online but are very expensive.

Also when me and my girlfriend go out to eat with her parents on occasion, if I was vegan there would not be much to get. If I go with them to a bar I can only get pizza and fried food. I don't eat fried food much and only when I go out with them. Usually all I can get is pizza, cheese sticks, or poppers.

I guess I am just saying that I already have a lot of limits as a vegetarian. I have been vegetarian since I was 17. I am 26.

I don't really like American food much. I actually like oriental food more. My favorite food is Thai food because I love spicy and they have so many vegan options. I like their vegetable curry with tofu. It is my favorite dish. I also like Indian and Lebanese foods.

I think that is really awesome you prepare most of your meals without animal products. We are working on ways of slowly eliminating animal products like dairy and eggs. Like I said, I don't like them that much, it is just an ingredient in things. I can work on it more though, there is more I can eliminate from my diet. I am vegetarian because of animal cruelty mainly. I will check out the podcast.

I got my girlfriend a book by Dr. Neal Barnard, he is vegan and founding president of the Physicians Committee for Responsible Medicine. He has a vegan cookbook, we have made some good recipes from that book.

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.

Oh my, I'll have to be careful. :inlove: