[caroline2]

I'm dealing with a nasty Nerve Damage from Anterior Hip replacement and talking with a naturopath last week, she recommended 4 supps and I bought two and started on them. Sphingolin for Myelin Basic Protein and Inosine for Nerve Growth Factor.

Do any of you know of these and if they have worked for you. I'm so open to try almost anything...I take MOST Vit B's so am very up on these B's..


The other 2 which I have not purchased are: Nervagesic and Flex NP.

Thanks for any comments.

[caroline2]

I'll also add here a friend I play bridge with deals with what she calls Ideopathic Neuropathy and had been taking Neurontin for like 9 yrs and once she got on grape seed extract a couple yrs ago, on my constant talking about it, she got off neurontin and feels some improvement. I often think she has latinent diabetes but her docs say no.

I am taking grape seed ex going on 20 yrs soon. My feet issues are OA and the Femoral Nerve Damage is the hip replacement mess.

[mrsD]

http://www.centerforfoodsafety.org/i...in-supplements

I am on my phone which is difficult to search with.
But I did find one article for sphingolin..

Given the risks for prion disease bovine tissue supplements
Pose substantial risks.
Did you know that brain surgery spreads prions since sterilization
does not remove prions from used instruments? We see articles
About people being infected from these instruments in the news.

I'll look up the other mentioned supps
When I return to my computer.

[mrsD]

Before looking up the other three you mentioned, Caroline....

I had damage to the Lateral Femoral Nerve from a C-section.
This is called Meralgia Paresthetica.

Here is a good explanation:
http://www.aafp.org/afp/2000/0401/p2109.html

There is a nice medical illustration (figure 2B) showing the two main nerves in the front of the body, and where they exit the abdomen.
The Lateral Femoral nerve exits along the side of the thigh, and is sensory only. It does not affect the strength of the muscles.

The femoral nerve carries both motor and sensory data.
http://teachmeanatomy.info/lower-lim...femoral-nerve/

Do you have any pain with your surgical injury? Or muscle weakness? If only numbness, then that would be something to live with. Many patients with MP get searing awful pain.... like I did. As nerves grow back any numbness may turn into unwanted and intermittent pain. They end up getting the Lateral Femoral Nerve severed, and when it grows back, the terrible stabbing lightning bolt pain returns.

So anyway....

1) the Sphingolin seems iffy to me and too risky. The bovine sources are often not identifiable as having Mad Cow. I believe a young cow was recently found with the disease. The Prions are difficult to find, and impossible to kill (instruments used on patients for open head surgeries, are thrown away... because they cannot be sterilized). I myself would never take any bovine or other animal organ derived supplement.

2) The Inosine seems low risk. There is a chance of raising uric acid (which causes gout), but that can be tested for with blood work.

3) The Flex NP has a boatload of Chinese herbs in it:
http://kirstinscounter.com/store/chi...s/flex-np.html
When using such a long list, it becomes impossible to know what may be helpful or not or interact with any RX medications you may be taking:
http://www.drugs.com/slideshow/herb-...eractions-1069
Besides, China has been sneaking drugs into its herbs to make them "stronger"... phenylbutazone is often found in herbs used for arthritis, Viagra in herbs for erectile dysfunction, and digitalis in cardiac products. So people need to beware of Chinese herbal products in general, IMO.

4) Nervagesic:
This link shows what is in this product:
http://www.mediherb.com/articles/L02...ostcardWeb.pdf

You can look up therefore the ingredients and check them out for interactions with your medications at this drug checker...
http://www.drugs.com/drug_interactions.html

While this drug checker is fairly complete, it is not 100% so and neither are any others. This topic is always changing and requiring updates.

WebMD now has some herbal and supplement monographs which are sometimes helpful.
http://www.webmd.com/vitamins-supple...ntname=inosine

As well the Maryland University Alternative site, can be useful too.
http://umm.edu/health/medical/altmed

Herbs are minidrugs...and some are quite potent. Just because they are natural is no guarantee they are all safe to use. Keep this in mind. People wanting to avoid Big Pharma...for toxicity reasons sometimes believe that all supplements are "better and safer" and this is just not true. There are risks on both sides of the fence.

One natural substance that is getting tremendous attention by the research community is Curcumin.
The newer highly absorbable forms that were used in studies are now available affordably OTC... like CurcuBrain by NOW and others. (these have the LongVida product in them currently.
I am using this and finding it helpful for my osteoarthritis, so you might want to try it too. I get mine on Amazon.

[caroline2]

Thanks for all your good research and links. I'm going to stick with Sphingolin and Inosine for at least 3 months, I'm a little over a week now...I've never given the mad cow thing a thought. The company that produces these two I feel is very reputable.

I had looked up the Femoral nerve after I realized this is what happened and YES it's right close to the incision in front on thigh where all the work and trauma happens in the surgery.

Does not have much pain, but tingling now and then, like right now, and could be in more years it will improve, if I'm still alive... The whole thigh is just "dead" and numb for the most part. IT band damage too down side of leg.

The surgeon came highly recommended but I find out NOW that about 15% who do the Anterior hip job can end up with the Femoral Nerve Damage.

I've been using alternatives for over 25 yrs and the only side effect I can ever recall was with st johns wort, it raised BP...I was taking it for depression before my thyroid FINALLY got "fixed"...a whole other long story that would fill a book....

B6 in the P5P form is also what I take for nerve issues, most days I take 150mg in 50mg doses.

I've talked about OPC's for going on 20 yrs soon and OPC's have been the closest to any kind of cure I've experienced...I use Pycnogenol and Grape Seed Extract....have not used an allergy/sinus med in 20 yrs soon....nor gone to an allergist ever again....those drugs and allergist NEVER helped me... I've posted about OPC's here on the vitamins section and mention them in other posts when the occasion arises. C

[mrsD]

I'd be careful with that high dose P5P... 50mg should be enough for most people daily. High dose long term use of B6 is implicated in neuropathies. As a vitamin it has PN when deficient, and also when too high.

If only your lateral femoral nerve is damaged, you should have normal strength in your leg...should be able to walk etc. It is just aggravating. I put mine to sleep and finally remission when the Lidoderm patches came out... 14 days of those and my severe stabbing pain stopped. You might want to consider a compounded doctor ordered transdermal cream for your hip.

Ketamine
clonidine
gabapentin
NSAID like diclofenac etc
anesthetic like lidocaine or tetracaine
amitriptyline

Mixtures of these often help topically and do not cause the side effects of the oral versions of the drugs. Many use these special creams in their specially made transdermal form by compounding pharmacies. Our PN and RSD forums have members who discuss and use this topical intervention.

If your goal is to regrow your damaged LFNerve then amitriptyline is an option. New studies show it stimulates growth factors of peripheral nerves.

And watch heat exposures...heating pads, hot tubs, steam rooms, etc... really flame up my nerve and the remission feels like it will fail. I can only stand 5-10 minutes of any extreme heat.

[caroline2]

Hi again, in all my research I found that P5P is ok to 200mg per day, some days I take less and some more, but I'm aware of that, but thanks for reminder.

Guess I should not use heating pad on thigh, sometimes I do, but usually mostly ice pack.

I don't know what my goal is to regrow etc, yes, I'd like to see some LIFE come back in this leg but don't really want to add more drugs.. I'll look at the amitripytline, it is a script right? I think I took it years ago with I was given the FM dx....I think, back in 1999 timeframe. I have not taken it since, only a short time,

Topricin is a very helpful topical with 11 homeopathic solutions for many pain issues. I use it daily going on a year now...I use others too. C

[mrsD]

Ice is okay in moderation.... don't use too long or it might change your circulation for the worse. 15 to 20 minutes at a crack.

My chiro in the past warned me about heat application to touchy nerves...said not to do any heat treatments more than 10 minutes long.

Many posters over the years with the flaming searing MP pain have often said numbness would be a blessing...and I tend to agree. I have some numbness today, but it is not noticeable to me anymore on that leg.

[Auntie Audrey]

In a 2009 study reported in the Journal of Alternative & Complementary Medicine, inosine at doses ranging from 1000 mg to 3000 mg were given to MS patients daily for one year. There were only 16 patients, and four of them, or 25%, developed kidney stones due to raised serum urate levels. Not sure if anything valid can be concluded from such a small study, but it supports what mrsD said earlier in the thread about inosine and raised uric acid levels.

[caroline2]

I was just talking to some folks on the PN area and talking about the benefits of grape seed extract and nerve issues. I posted some links and don't have time right now to post again but one can google:

Nerve Pain and Grape Seed Extract

There are many links on this topic. I'm headed to 20 yrs on grape seed ex for my overall general health. My nerve mess is from a hip replacement in 2010...femoral nerve just about dead....thigh is awful with numbness and tingling often.