NeuroTalk Support Groups - Seeking Help for Peripheral Neuropathy

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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:

Quote:

Originally Posted by Aravindan (Post 1124748)

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.

Quote:

Originally Posted by Aravindan (Post 1124748)

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

Quote:

Originally Posted by Susanne C. (Post 1124030)

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!

Quote:

Originally Posted by zkrp01 (Post 1124076)

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.

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.

Quote:

Originally Posted by Susanne C. (Post 1124030)

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.

Quote:

Originally Posted by janieg (Post 1124582)

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...

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.

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.

Quote:

Originally Posted by dustinc (Post 1125242)

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.