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Old 04-10-2013, 03:52 PM #21
Msmull Msmull is offline
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Originally Posted by Sallysblooms View Post
Not eating meat started my problems. Make sure you get tested for B12 and get all of the amino acids, carnitine etc you miss.

I saw a nutritionist years ago and then started eating meat again.
It's interesting that you say that. I was wondering if my not eating meat the last 3 years had something to do with my feet getting worse. I have to rethink everything. Since the last message I posted I got results from two blood tests I had the other day for Glucose. Fasting and Postprandial and both were high. With my high triglycerides and low hdl cholesterol as well, we might be getting to the root of my issues.
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Old 04-10-2013, 04:10 PM #22
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Lightbulb

You will lower your triglycerides by up to 1/2, with the fish oil, if you take enough.

It would be useful to know your A1C reading too, besides fasting glucose. A1C tends to go up age and reflects a 3 month time period instead of a small window.

Cholesterol readings are not likely to be affecting your PN IMO, unless you take a statin, which WILL affect and cause some PNs in some people.

High triglycerides thicken the blood and impair circulation. So if you are over 300 with those, getting them down will improve blood flow to your feet. (avoiding high fat meals, will also do the same as high fat meals thicken the blood as well).
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Old 04-10-2013, 04:20 PM #23
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Oh yes, triglycerides tell a story about sugar, as well as cholesterol. My glucose levels are always very good but for nerve health my integrative MD told me I should stop refined sugar, gluten and bad carbs. BOY did my next triglyceride etc testing come back good!

Learn all you can about your blood sugar and diet. Sugar/carbs are not good for the nerves and blood sugar, even if you have normal testing like me. It is great for everyone to have level blood sugar. Otherwise it is toxic to our nerves.

Good carbs are important but the processed ones, rice, potatoes,etc spike blood sugar.

Diet and supplements are really important.

I do think you are getting some good answers that will help.
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Old 04-10-2013, 08:44 PM #24
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Welcome to NeuroTalk:

Were you taking vitamins when this test was done?
If so and you didn't discontinue them, for about 7 days this could
be a false elevation.

Can you give us more information about yourself?

Some autoimmune neuropathies begin to affect the autonomic nerves that supply the stomach and heart. But not all of them.
And not all neuropathies are due to low B12 either.
You could have a DNA methylation mutation that results in failure to methylate (activate) B12...so it cannot work properly.
There is another test called the MMA...which will demonstrate if your B12 actually works. Or you could have run into a lab error.

Many things are possible, therefore.

So please give us a history of what you were doing when this started, including all medications and vaccines you took or are taking.
Hi. I was not on Vit B12 and was not on them when this test was taken. B12 makes me nauseated.
I started getting numb, pain and tingling on my left side back in 2005 and have continued to go to the doctors since then trying to get help and figure this thing out. They thought a stroke. I have symptoms of Memory loss and Gait Disturbance but have all of these other issues that we can not find a reason for. Pain in fingers, knuckles, wrists, ankles, knee's, behind knee's, hips, upper back pain stiff, neck very slow to turn...stiff and grinding, jaw pain, feet burn on bottom and pain on top and bottom, toe joint pain, headache, left temple pain, eye twitching, twitching, dry eyes, fibro foggy thoughts, bad memory loss, sleep problems, cold sensitive, heat sensitive, light and noise sensitive, joint pain, my skin even hurts, muscle pain, thrush, incontinience, hoarse throat which causes hoarse voice, scratchy throat, feet and hands feel like gloves on with tingling & pain and knumb....hurts very much, fatigue, My hole body feels inflamed from head to toe, anxiety, limbs numb tingling.

Medications

Metoprolol 25 mg twice a day
Lorazepam 1 mg 3x's a day or as needed
1/2 benedryl bedtime
Plaquenil 200 mg twice a day
Ibuprofen 600-800 mg a day
CoQ10
Fish oil
Folic acid 800
biotin
2 81mg ec aspirin a day
Stool softeners a day
Fiber
Nasal spray as needed
Oxycodone as needed
magnesium
calcium
potassium.
I am Iga and Igg deficient but not too bad. Throughout have thought possibly lupus but just same symptoms. Ana is elevated always. Antihistones elevated. IBS. Always feel like I have severe inflammation. I have almost every single symptom of fibromyalgia and am told that I have it. Some doctors say that is not a diagnosis until this last one who say's it is a diagnosis. I have had depression since my very 1st memory when I was 5. I have taken so many medications for depression and pain that either do not work or cause severe reactions. Even some vitamins cause problems in my brain.
I have recently started myself back on lexapro due to my anxiety and depression. The doctor wanted me to start effexor and we were to discuss it next app. that I do not have scheduled yet. I didn't feel I could wait until an appointment to start effexor and I still had some lexapro. I have a ton of stress and all of this seems to be much worse with the stress. Night time is so much worse with pain. Different weather totally effects my inflammation. A 4 month stay in Florida for my husbands treatments was a total surprise that I had no pain or inflammation and felt like I had never felt in my life......which was wonderful to live without pain in that time. If I could go back............I would stay.......but I can not. Sorry so long. Hope this helps.
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Old 04-11-2013, 06:43 AM #25
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Lightbulb

If moving to a warm location helps, that would suggest cryoglobulinemia. Have you been tested for that?
This is a peptide protein from the bone marrow that clogs up in cold temps, and dissolves in warmth. When clogging up the little blood vessels, there is ischemia therefore at tissue sites, with
pain and damage.

http://en.wikipedia.org/wiki/Cryoglobulinemia
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Old 04-21-2013, 06:50 AM #26
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In your experience have you heard of any Neurologists suggesting any of these supplements? Neither of the Neurologists I've been to so far never mentioned anything other than drugs. I went to an Orthopedic Surgeon who specializes in feet and he suggested I take B6. He's the only one who suggested anything other than drugs.
I had a fairly thorough check-up by a neurologist a few years back when I was trying to get to the bottom of the pain that was at that time dx'd as fibromyalgia. We hadn't yet focussed in on neuropathic pain but he did know I have type 2 diabetes. The only thing he recommended at that time was Alpha Lipoic Acid or R-Lipoic Acid (a stabilized form of Alpha Lipoic Acid). When I asked what dose to take, I found his answer smile-worthy, he said, "any dose."

Evidently he knew of a patient who felt it really helped him, but didn't know of any specific dosing parameters.

So yes, I have first-hand experience with a neurologist suggesting a supplement!
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Old 04-21-2013, 08:09 AM #27
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Default Hi Msmull

I am sorry you have PN. I do too, but I have found some relief. MrsD is correct about B12. For over a year, I have seen a doctor called a physiatrist. The deal with pain first, then try to treat the whole body at a cellular level. This doctor reduced my pain. Last summer I had to be pushed in a wheelchair at the state fair...this summer I am walking much better.
I take B12 injections weekly, and a few other suppliments. Also know that I didn't believe in suppliments at all. My PN was caused by a surgery that didn't go very well, and three torn tendons in my ankle. I have healed wrong.
I can't say that my symptoms are gone, but they are definately better than what they were. Yes the suppliments can be costly, but there are sites recommended on NT. for the best prices.
I hope you find some answers that work for you. Keep hope alive that something can be done. ginnie
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