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06-06-2018, 11:42 PM | #1 | ||
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Newly Joined
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New here. I have a brief introduction, and two questions for anyone who'd care to respond.
I began manifesting signs of neuropathy just three weeks ago: numbness and tingling in all 10 fingers, both feet from the ball of the foot forward, and sometimes my tongue. No pain, however. But I'm scared. I'm a writer and artist by profession. My typing has become clumsy, and when I hold a pencil, I feel I'm no longer in total control. This illness could cost me everything. I just came out of two days of tests in hospital. They confirmed what my condition is not: It isn't from diabetes, MS, a stroke, or B12 deficiency. They wanted to do a nerve biopsy, which would render me permanently numb in an area of my ankle, so I told them to get lost. Making a long story short, I strongly suspect my statin medication as the cause of PN. It was the only medication I was taking, until I threw my pills in the trash last week. First question: is there any discussion or dependable research regarding statins and peripheral neuropathy? Second question: I've searched this forum and elsewhere for knowledgeable discussions of non-pharmaceutical treatments, specifically for reversing PN. There is a lot of information out there. If I took all of it seriously, I'd be consuming around 50 supplements daily, from exotic new B12 formulas to ayurvedic medicine. All of which I'm open to, but I don't know where to begin to sort through what might work best, and proper dosages. Currently I'm trying out the following: • B12 (methylcobalamin) (500 mcg) • Folic Acid (400 mg) • Vitamin C (1000 mg) • Vitamin D3 (2000 iu) • CoQ10 (100 mg) • R-Alpha Lipoic Acid (200 mg) • Acetyl L-Carnitine (1000 mg) • Magnesium (1000 mg) • Apple cider vinegar (1 tbsp) • Turmeric (1/4 tsp) • Chili pepper • Red onion (for Quercetin) • Cinnamon • Sulphur (MSM) • Coconut oil • Flax seed Not all taken together, but at various times of day. I do notice a fair but temporary alleviation of symptoms after taking the top half of the list. But it's been only 10 days. I absolutely will not take any pharmaceutical for this condition, full stop. I feel I've been poisoned by the allegedly-safe statins, which I always suspected I didn't need anyway. Most PN medications are meant for pain relief, and thank goodness I'm experiencing numbness rather than pain. Since the condition for me is still new (though the neurologist told me PN strikes from 6-12 months before you feel any outward symptoms), I'm determined to fight back and free myself. So, can anyone here who is far more experienced than I am advise me or point to some reliable, expert resources for reversing non-diabetic PN with food and supplements? |
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06-07-2018, 01:24 AM | #2 | |||
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Grand Magnate
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Hi Billingsgate
Welcome to NeuroTalk . There is some evidence that use of statins can be a risk factor for PN but the prevalence of it is not clear. Here is some information which might help. WHO Drug Information Vol. 19, No. 2, 2 5: Safety and Efficacy Issues: Statins and peripheral neuropathy Statin Neuropathy – Therapath Neuropathology Association of statin use with peripheral neuropathy in the U.S. population 4 years of age or older. - PubMed - NCBI
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06-07-2018, 06:24 AM | #3 | ||
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Thank you, Kiwi33.
The WHO report is particularly interesting, in that it reports a 52% rate of recovery for those who stopped the statins. Although the drug I was taking, rosuvastatin (Crestor), wasn't listed, it gives me some small glimmer of hope. |
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06-07-2018, 07:06 PM | #4 | ||
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If I read MrsD's recommendations right(someone please correct me if I'm wrong) you can take way more Methyl B12(I'm doing 5000mcg right now) and back off as soon as the symptoms calm down.
If you read(it's long) her thread on B12 deficiency you will find that normal tests don't necessarily catch true and proper B12 issues: See link sticky at top of threads. My cocktail is similar to the top half of your list and I am feeling relief after just a few days. I will back off my Methyl in a few more days.... |
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06-07-2018, 07:07 PM | #5 | ||
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06-08-2018, 02:40 AM | #6 | ||
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06-08-2018, 11:24 AM | #7 | ||
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My husband had a good response to Alpha Lipoic Acid. I think he was taking 600 MG/2Xday. This was before R-lipoic acid was available.
I would up the dosage of B12 and look at replacing the folic acid with a good bio-available B complex that has the active form of folate as well as the other B vitamins. Also, look into adding K2 with your vitamin D3. The K2 helps the calcium get to where it belongs. |
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"Thanks for this!" says: | Billingsgate (06-08-2018) |
06-09-2018, 06:22 AM | #8 | ||
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Junior Member
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No, not at all but keep in mind I am basically experimenting with vitamins and might be taking too much of one and not enough of the other. We are all not created equal, what caused our neuropathy(idiopathic for me, so the field is wide open) didn't cause it in others. So what slows/stops/reverses it for us most likely will also be patient(guinea pig)/vitamin specific.
Fortunately, the others that have gone before us that have recorded their journey here on this forum and others like it allow us to consume huge quantities of information. Just like hormone's, I think vitamin research is in it's infancy. So at least for us PN sufferers, the way I see it is that it's up to us to get the lid back on Pandora's box. I'm going after know triggers and known things that reduce my neuropathic symptoms. I wish I had written down 4 years ago the exact specific symptoms in some type of log every 6 months without looking back at the previous entry. Mine has been slow 'moving' like spilled molasses on the front porch in Febuary, so noticing a change has been difficult. I'm actually kinda glad mine "flared up" a few weeks ago since it got me off my research **** and forced me to make changes in my vitamin intake. Ok, so I started out 4 years ago on the perscribed Metanx, switched to Costco's Kirkland brand Super B Complex multi Vitamin which was fine until the flare. I am now on these once a day: Costco multi: ....sorry it refuses to rotate.... And I have some left over Metanx, so I am taking those once a day too until they run out. I started out with the 5000mcg Methyl B12, and am now switching to the 500mcg Methyl B12 since things have calmed down. The flare caused me to loose ground...damage done. My right foot numb area is now 50% larger than pre-flare. I have never had any reduction in numbness and it's hard to describe what positive effects the vitamins have but it's almost like my foot swells behind the numbness with no physical swelling occurring. It's almost as if the trigger just irritates the numbness or everything else around those nerves making them hyper sensitive to the numbness. The cocktail has localized that numbness making it possible to ignore. It has also completely stopped the flushing feeling, which is like standing in warm water and having someone raise and drop the level of the water from the foot to the knee. |
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06-09-2018, 06:23 AM | #9 | ||
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Junior Member
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Good grief...sorry for the ginormous photos....will try and fix that.....
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06-15-2018, 04:45 PM | #10 | ||
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N/A
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OP: I see your list of supplements and one I would add is grape seed extract and I've been taking it 23 yrs and personally developed some neuropathy from hip replacement 7 yrs ago and then some from staph infection in knee and the drugs and then the arthroscopic cleaning of the knee...I think it was wrong to do that. I had been on 2 months of IV abx drugs for the infection.
A friend with 20+ yrs of neuropathy is doing better with grape seed extract and off her gabapentin which caused so many side effects..... I take a lot of supplements and in good health and I'm heading to 80 soon. |
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