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LINDAF49's Photo LINDAF49 Posts: 13,341
11/26/17 8:00 P

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Over a year since the last posting but yes, that med is still available and though I have not taken it, I have taken several of the components in it. My neurologist does not suggest or recommend but says they may be of some help. They seem expensive but then I think about the cost of even one Dr appointment or one month of insurance premiums and know that if it helps it is worth it!!. From my readings over the last two years, the alpha lipoic should have an R in front of it, the B12 should be a form that starts Methyl..... and the D should be D3, the Carnitine cannot be used by people on thyroid meds or blood thinners. There is much encouragements for Omega3 and to be careful NOT to get too much Omega 6 and be careful to not get to much B6..... so There seems to be a consensus that some of these help but you need blood work BEFORE you start and to be monitored on routine basis - this all runs into money or insurance that will pay it all and to find a Dr. that will work with you on it. I have trouble with ll this research and I even have a nursing background so it is easier than for many. I am strong advocate for my care and Drs. usually work with me well. My neuropathy still continues to get worse through it all. Faith says Be strong and of good courage!!

Edited by: LINDAF49 at: 11/26/2017 (20:01)
Linda in WA state ***John 10:10b Jesus came to give me life, an abundant life!
*Gluten free, Heart Healthy, Anti-inflammatory, Diabetic Low Carb way of eating and life structure
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EMARSH1224's Photo EMARSH1224 Posts: 21
10/23/16 7:15 A

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I perceived some improvement when I was taking a combination of B12, Acetyl L-Carnitine, Alpha Lipoic Acid, and Vitamin D. I got this through a supplement called Nerve Renew, and added the Acetyl L-Carnitine myself. I combined it with a doctor-supervised grain free diet. It did seem as though the burning sensation in my feet reduced while on this regimen.

Has anyone else tried Nerve Renew? I don't see it as a magic pill, but there does seem to be a case for their cocktail of vitamins as being beneficial to neuropathy sufferers.

Erin
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DEBBIE84's Photo DEBBIE84 Posts: 2,918
8/6/16 5:49 A

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Thank you. One of the wonderful side effects of my meds is that I forget things. I forget to do things and I forget things I have done.....so, I posted my story on a different topic for this team. I realized what I had done when I looked on this topic. Sorry about repeating myself. :)

"Decide what you want, decide what you are willing to exchange for it. Establish your priorities. And go to work." - H.L. Hunt

no pain, no gain.....No Pain, No Gain .....NO PAIN, NO GAIN



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SWEETSUELOO86's Photo SWEETSUELOO86 Posts: 4
8/1/16 12:38 A

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Welcome to the team and thanks so much for sharing your story !!!

I can do this...Beach time here I come !!!


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LINDAF49's Photo LINDAF49 Posts: 13,341
7/22/16 5:21 P

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It is hard to evaluate and define our symptoms so I should not be surprised that it is hard to know if a change in feeling is positive or negative, getting better or worse??? The last few days I have had more feeling in my great toes - from total no feeling to sharp pointed pain for a few hours then gradual return of some "real feelings" in those toes Made a big difference in walking- I really noticed yesterday.
So I am curious if this sounds familiar to any one???

Then wondering if anyone would share what supplements. vitamins, you are taking and what ointments, lotions etc you use. I have been reading about alphalipoic acid, magnesium, B12.
I presently take a multivit, extra C, D3 and CoQ10 for general health and heart stents, Calcium, Magnesium and zinc for age and arthritis, thyroid support , four other Rx for heart. I make an ointment with essential oils for rubbing feet, legs and shouldersand spine where I can reach it,

Linda in WA state ***John 10:10b Jesus came to give me life, an abundant life!
*Gluten free, Heart Healthy, Anti-inflammatory, Diabetic Low Carb way of eating and life structure
Jan 1 2019 immediate goal of 199.5# = ONEderland Long term goal of 160#


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LINDAF49's Photo LINDAF49 Posts: 13,341
7/18/16 7:23 P

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Debbie, Welcome to our group - sad that Drs won't listen to us when we first tell them things...unfortunately there is too much of that in our world - I am thankful I am from the medical world [RN for 12 years before stopping to raise children], and understand a lot of their terminology and talk to them sin medical terms.

But I am no longer a nurse, and have suffered years with fibro and now neuropathy and heart issues with 2 stents. Meds for those two things also aggravate/cause neuropathy and then the old genetic card is thrown in nd hard to sort it all out.

My theme song is one day at time sweet Jesus... strength for today to do what I have to do...
I hope you will find encouragement here - like you said, we at least understand what you re talking about!!!

Linda in WA state ***John 10:10b Jesus came to give me life, an abundant life!
*Gluten free, Heart Healthy, Anti-inflammatory, Diabetic Low Carb way of eating and life structure
Jan 1 2019 immediate goal of 199.5# = ONEderland Long term goal of 160#


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DEBBIE84's Photo DEBBIE84 Posts: 2,918
7/18/16 2:37 P

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Hi! I just found this team today and decided to join. I have had symptoms of Peripheral Neuropathy since I was in high school. I mentioned some issues to my doctor when I was only 18 but he brushed me off saying I was overweight, lose the weight and I would feel better. I was 30 pounds overweight at the time. I saw several doctors through the years, telling them of various problems, they all said I was fine and everything was normal or they blamed my weight. In the early 90's I tried a new doctor and by then I was having some major issues...severe neck pain, bad headaches, and my clothes were hurting me.....I really couldn't hardly bear someone touching me. I was diagnosed with migraine. She said my neck pain was tension from stooping over books as I was in college. My clothes hurting me, well, she said that clothes do not fit overweight people as well as they do normal size people. I knew this was wrong as I had been overweight most of my life and my clothes had never hurt me before. At that moment, I felt so defeated. I gave up. I never went back to that doctor. When I got a new doctor I did not mention my mysterious illness to him....I did not see the point. As the years went by, I became more super sensitive to touch and had stinging pain that radiated out. The past four years were very rough on me. I struggled to work, care for my dying mother, and was exhausted all the time. The last year I worked I missed at least 50% of work days because I just could not get out of bed because I was exhausted and in pain. Last June I got so bad that I was in horrible pain all over my body and could barely walk from my bedroom to my recliner. I finally went to see my mother's doctor....she had tried to get me to go to him for years before she died. I was stunned when he could SEE that I was in pain. He knew immediately what was wrong with me...another stunning moment for me. I thought I had fibromaylgia. I never saw it coming. I have Peripheral Neuropathy and a great deal of permanent nerve damage....symptoms since high school and I was 53 at the time I was diagnosed. I went through my symptoms...told him everything...and was also diagnosed with Fibromyalgia and Allodynia. This doctor told me that the headache I have had for more than 20 years is caused by the neuropathy. I am no longer able to work and even with treatment my pain level prevents most exercise....I can get into a swimming pool and move around but not really swim. I am on strong medications but treatment is limited because I can't tolerate some of the meds used to treat my illness. I am making the best of a no win situation and hopefully I can lose some weight and that would help my function level as I would not have to carry around all of this extra weight. I am sorry this post is so long....I am very verbal and I think I just needed to tell my story to someone that can really understand what I am going through.

Edited by: DEBBIE84 at: 7/18/2016 (14:42)
"Decide what you want, decide what you are willing to exchange for it. Establish your priorities. And go to work." - H.L. Hunt

no pain, no gain.....No Pain, No Gain .....NO PAIN, NO GAIN



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LINDAF49's Photo LINDAF49 Posts: 13,341
7/11/16 11:08 P

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Information is a bit over whelming isn't it. I got my original diagnosis May 5, 2015 - I will never forget the Dr with poor bedside manner that told me the big words and that mine was severe and nothing could be done for it - go home and prepare for life in wheel chair, paralyzed with loss of bowel and bladder function.... and don't fall...loosing 30# immediately will slow the progression but not help you ... pretty harsh but maybe I needed that to challenge me to find other Dr, other tests, even to go through a surgery that would lead me to being addicted to pain med for a short time and yet still brought out the fighting side of me today I walked .
I study the subject at least a half hour a day...many sites are real "snake oil" but many of then have similar trains of info and treatment ideas and I explore them and will continue to learn and treat as best I can - I have a Dr that is willing to work with me, is encouraging and wants me to check back in with a neurologist now that I am 7 months post-op and have met my goal of walking a therapeutic 5K [3.1miles] with two canes and 4 rest stops to check cardiac status.
There are so many sources out and about - Facebook has several and then this one here and then the internet is full of articles and Drs and pills and oils.

Recognizing symptoms and learning to define our own is very important to explain things to Dr. And then keeping an attitude of gratitude and willingness to work hard through the pain and frustrations. People sk if I am glad I went through the surgery and I smile and say yes... I have had this much more time NOT in a wheel chair and NOT wearing a diaper and when it is time for me to accept that level of this dis-ease the Lord will still use me for His purpose and His glory.

Edited by: LINDAF49 at: 7/22/2016 (17:07)
Linda in WA state ***John 10:10b Jesus came to give me life, an abundant life!
*Gluten free, Heart Healthy, Anti-inflammatory, Diabetic Low Carb way of eating and life structure
Jan 1 2019 immediate goal of 199.5# = ONEderland Long term goal of 160#


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KITTYDIVA's Photo KITTYDIVA SparkPoints: (662)
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11/14/15 9:34 P

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I was just diagnosed with idiopathic progressive neuropathy a little over a week ago. I had some labs done, but not all of the results are in yet. So I'm not sure where we go with the treatment. The doctor did say that I am deficient in vitamin B6 and B12 and that he wanted me to start taking a B complex pill for now. After the other tests come in, we'll decide then what other treatments to try.

I also have RA (rheumatoid arthritis). From what I've read in the past week or so, it sounds to me like autoimmune diseases may play a role in the development of neuropathy. I had symptoms of neuropathy, but thought the issues were because of the RA. But when I became unsteady and had some falls, my doctor referred me to a neurologist. So now I guess I'll be trying to deal with both of these problems as well as osteoarthritis.

I hope there are people here who have more info than I have.

Patti

You don't lose unless you quit trying.
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2/23/15 3:15 P

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Does walking affect nerve pain in your feet?

I can do all things through Christ who strengthens me.


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LIKINMENOW's Photo LIKINMENOW Posts: 51,476
8/2/14 10:56 P

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I am so thankful for this. I went to a neurologist who thought hat I had diabetes. She found that I have MS and neuropathic pain. But because of my age, she did not want to treat me.

I was very upset with this doctor. Now I am trying to find another neurologist to go to.

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RENIESSPARKIN's Photo RENIESSPARKIN Posts: 9,153
7/16/14 11:48 A

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Many thanks for gathering this helpful information. I plan on posting it on my wall and in my Sleep Diary for future reference. I've also got a friend who does NOT have Diabetes, but has severe Neuropathy. I'll share it with her.

It's a shame that more members don't check this site out. Sigh.

Hugs,
Renie

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GWEN_3571's Photo GWEN_3571 SparkPoints: (2,895)
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7/12/14 7:54 P

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Thank you for the information.




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RODYANNE SparkPoints: (13,040)
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3/11/14 6:33 P

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Through information.


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UNIQDRGNFLY's Photo UNIQDRGNFLY Posts: 1,261
2/21/14 2:36 A

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Good info. Bumping.

All who have neuropathy do not neccessarily have diabetes, I do not.








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DIANESNEWLIFE Posts: 5,902
6/17/09 5:59 P

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Neuropathic pain, or nerve pain, can be caused by injury or an underlying disease, such as diabetes or shingles, that affects the nerves. It can cause an electric or shooting pain, numbness, tingling or a prickling sensation. Many people with nerve pain can't pinpoint an obvious injury or illness that explains their symptoms. Often, the pain is out of proportion to the injury or seems to come from a limb that's been amputated (phantom limb pain). Even light touch or movement may trigger nerve pain.

Nerve pain can be a frustrating and complex syndrome that's often hard to diagnose. It can affect your mood and sleep. It may take some time to find the best treatment. If you have it, though, you're not alone. About one in 50 people have this condition. But most people with nerve pain do respond to treatment and are able to lead productive lives.

Symptoms of nerve pain may include:

Numbness
Being very sensitive to touch
Having an exaggerated pain response
Tingling, prickling or burning pain, especially at night
Electric, sharp or shooting pain
Deep, aching pain
Muscle weakness
Wasting of muscles


In nerve pain, disease or injury causes damage to nerve fibers. These damaged nerve fibers don't work properly. They can often send abnormal or exaggerated pain impulses to the brain.

There are many causes of nerve pain. For example, in people with diabetes, chronic high blood sugar damages nerves. This is called diabetic neuropathy. Other causes of nerve pain include:

~Alcoholism. Deficiency of vitamin B-12 may damage nerves.

~Amputation. Damaged fibers around the site of an amputation misfire, sending pain signals to the brain (phantom limb pain).

~Sciatica. Compression of sciatic nerve roots leaving the spinal cord can send pain down along the leg.

~Shingles. The same virus that causes chickenpox lies dormant, then reactivates inside nerves.

~Multiple sclerosis. An immune system response damages nerves.

~Inherited neuropathies. Genetic mistakes cause nerve damage.

~HIV/AIDS.


How is nerve pain diagnosed?

Diagnosing this type of pain is often tricky and may take some time. Your doctor will start with a detailed medical history. Be sure to tell your doctor:

1. How long you have had the pain

2. Where the pain is located

3. What your pain feels like (such as burning, stabbing, throbbing or tingling)

4. What makes the pain better or worse

5. If your pain is interfering with work or with your ability to socialize or do everyday tasks

6. About any other medical conditions that you may have

You will likely have a thorough neurological exam, which includes testing of reflexes, sensation and muscle strength. You may also have blood tests to check blood glucose levels and levels of vitamin B-12. Depending on your symptoms, other tests may include:

Electromyogram. An electrical test of muscle function.

Nerve conduction study. Test of nerve function.

Lumbar puncture (Spinal Tap) A procedure for removing a sample of fluid that surrounds the brain and spinal cord.

Genetic tests. A blood test that isolates genetic information that may identify inherited conditions.

Imaging studies. This may include MRI or CT scans.

Nerve biopsy. Testing a small sample of nerve tissue for signs of disease.


Treatment

Nerve pain may not always go away completely, but it can often get better with treatment. The choice of treatment depends on the underlying cause. For example, diabetes-related pain requires good control of blood sugar to help prevent further nerve damage. Alcohol-related nerve pain can be treated with vitamin supplements, proper nutrition and an end to drinking. For many, medications can help control pain, including:

Certain antidepressants
Some anti-seizure drugs
Steroids
Narcotics and other pain relievers

In some cases, surgery to block nerve pain may be an option. Transcutaneous electrical nerve stimulation (TENS), acupuncture or other treatments may help. Your doctor may also suggest physical therapy to strengthen muscles and improve range of motion. Counseling can help you cope with chronic pain.

Don't ignore nerve pain. Once the cause is found, treatment can often bring relief, allowing you to get on with your life.

By Louis Neipris, M.D., Staff Writer, myOptumHealth

www.kivitv.com/Global/story.asp?S=10
41
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Edited by: DIANESNEWLIFE at: 6/17/2009 (18:17)
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