Quacks and charlatans - or genuine advice??
 

Hi to all followers on this forum.

I am still relatively new to the neuropathy "journey" having just been diagnosed with neuropathy (EMG Test) in my feet - constant burning and pins and needles - but my condition is rapidly deteriorating. Currently walking using crutches whereas four months ago was walking 2km in hiking boots without any pain

Probably like all others on this site I am struggling to find a knowledgeable and understanding neurologist experienced with my condition. In addition we are looking for every bit of information we can get our hands on, and self-help / sharing sites such as this are invaluable.

With life in general, where there are desperate people, I find there are two types surrounding them: those who are genuinely seeking to assist them, or the "snakes" who are out to take advantage of their situation and exploit them.

In searching the web, I have come across two potentially helpful products and wondered if any fellow forum members are able to give their views on each, either positive or negative. Not sure if it is permitted to comment on specific products on this site, so will leave this up to the moderator.

1. *admin edit* a product called Neuropathy Support Formula containing Vitamin B1, B-12 and Alpha Lipoic Acid.

2. *admin edit* Dr Randall C Labrum and a book titled "The Peripheral Neuropathy Solution".

Any comments as to weather these are "Genuine" and helpful products, or fall into the "Quacks and Charlatan" category??

*admin edit*

All the Best!!!

Lots of threads here on ehlpful supplements
 

Hello PN Friend!

Compared to others here I am new to this field yet have done lots orf reading and this forum contains information about vitamins that have proven helpful re neuropathy.Perhaps searching under the vitamins you may be taking would give you lots of information.As mayn people here advise it does pay to read current research artcles or surf the Neruopathy Association website or (UK) the Neuropathy Trust website. There are some famous pain researchers based in Australia who have written books called "Understanding Pain" (Lorimer Mosely or Morsely I think). They also offer classes and may be good contacts for you.Best Elaine55

Over the years we've had many discussions on various fixed combinations of Neuropathy products and treatments.

Just plug in your keyword(s) to our search engine and those threads will come up in a list.

The search is at the right top of each page here, and the general search link is in my signature in every post I make.

Hint: Fixed combination products do not address individual needs where PN is concerned. Some of these "remedies" have herbs in them, which are questionable too.
Also anyone who says they can cure PN for a price....should be
suspect. (anyone with a real cure would not have to advertise for years and years either). So IMO that is your answer who profess "cures" for a fee.

There is alot of people trying to make money off PNers. I've found even some who abandon their first effort, and then move shop and rename from another location.

Quacks & charlatans??
 

Thanks for your wise words MrsD.

I guess, deep down, I was hoping for a potential "quick fix" I am beginning to understand there is no "quick fix" on the PN journey.

I am still exploring this vast site and continually discovering new gems of wisdom and advice from your wonderful members. The amount of empathy shown to fellow sufferers is amazing.

Cheers

Aussie51

If you tell us more about yourself, in detail.... some of us can perhaps point you in a direction for some comfort and pain relief, minimizing progression if possible, etc.

Each person has different needs when it comes to using supplements, Lidoderm patches, Salonpas patches, Magnesium lotion, even magnets (which I tend to use alot--and yes I have a post about that too).

Sometimes lifestyle changes help tremendously, but doctors do not pay attention to that either. :rolleyes:

Don't feel bad about that—it's par for the course, along with other parallel paths we take. ;)

Some find it helpful to be aware of the Kübler-Ross stages of grief as applied to chronic illness.

Doc

Thanks MrsD - just looked up your profile - 25,000 posts!!! Wow. You should call yourself WonderWoman.

I am in my early 60's, onset of my problem has been quite rapid, Four months ago I could walk 1-2km quite OK, now on crutches and do not walk more than 100metres. I am overweight but now drastically improving my diet, losing weight slowly but surely. (height 6'3" was 134kg, now 122kg) - but much more to lose yet.

My feet are constantly burning, have electric-like shocks through my big toe, and the base of my toes feel red-raw, like there is no skin on them. Currently on 150mg Lyrica twice a day, and thats ok if I don't walk around too much. My best pain relief is bathing my feet in cold water for about half an hour in the evening, then bliss!!

My local doctor, called a GP (General Practitioner) in Australia, has tested for diabetes, c-reactive protein, iron studies, cumulative electrolytes (serum), liver function, red & white cells and platelets, vitamin C, vitamin D, Vitamin B12, c-peptide, and insulin. All considered normal except my insulin level is marginal - hence his stern direction to lose weight. My B12 is 368 pg/ml, a little low by your suggested standards, but considered ok in Australia where 200 - 1000 is classed as normal. I have read your B12 thread and take your comments and suggestions on board THANKS!!!!. Have also had MRI scans on lower back, quite a bit a wear where the feet nerves exit the spine, but unlikely to be causing the pains according to a specialist neurosurgeon.

Compared to many of your forum members, my current condition is mild - if I start feeling a little sorry for myself, I just read about the chronic pain experienced others on this site and give myself a kick in the pants (literally that is!!)

My current aim is to find what is causing the deterioration of my condition - my doctor has come to the end of his knowledge and has referred me to a neurologist, who conducted an EMG test, tersely told me I have neuropathy, then promptly left the room. He is totally disinterested and it requires several emails to get a response to conduct further tests. I am desperate to find a knowledgeable and experienced neurologist in my State of Western Australia - hence my post "Neurologists in Australia" a few days ago hoping for suggestions from members. I have a couple of leads to follow up. One of the great things today with the internet, consultations can take place over the web via Skype and other technology, so your neurologist can he thousands of km away, even in another country! As is it I have an 800km round trip to visit the neurologist, leaving at 4.30am and arriving home at 10pm.

Thanks MrsD (WonderWoman)

Thanks for your suggestion Dr D - yes that is very interesting, I am still at the denial stage, but sensible enough to actively try to do something constructive to seek help and further diagnosis.

PS - absolutely love your picture - I am a dog lover myself and your image is a classic.

Thanks for the extra information.

I'd start with lukewarm epsom salt soaks to see if your feet respond to that. Don't put too much in the water, as it might sting your toes.

If your pain is confined to only under the toes, I'd try using a good antifungal cream there for 2 weeks. Sometimes fungus can be deeper in the skin and not very visible yet. That is a cardinal sign of athlete's foot. It would be good to get that out of the way as a potential causative agent.

There is also a very cooling product called BioFreeze. I don't know if you have that in Australia...but if you do give it a try.
It is a gel that helps menthol penetrate into the skin and activate cold receptors which then block the feeling of burning. It can last about 6 hrs, but does not heal anything, and when it wears off
the burning returns.

you can look at it here:
http://www.iherb.com/BioFreeze-Cold-...?ic=2&flt=0000

Amazon also has it, but I don't know about Australia. Our Amazon is much less $$ than the iherb link. But iherb does ship to Australia. Here it used to only be available from chiros and
physical therapists-- which is where I got mine originally when I had PT for an injury.

I've used Biofreeze for years for my burning episodes. It is quite nice.

Were you exposed to vaccines, or antibiotics or other drugs?
Do you take a statin for cholesterol? It is helpful to find out what your trigger is, so you can then perhaps use specific supplements to help.

Let me introduce you to some of my colleagues... :D

Doc

They're all absolute classics Dr Smith - and gave me a real chuckle!! But I still think your own pic is the best - there's a touch of friendly wisdom to the image. A bit like my old grandma in her rocking chair, who when answering one of my silly childhood questions, would look over her glasses, give a deep sigh, and say "now where did you get that idea from…"

NOT that I am suggesting you are elderly of course!!!!!!!!!!!!!

Cheers

Aussie51

Thanks MrsD - The toe fungal issue is one I have had in the distant past so know what to look for, and have treated that successfully, so I think that is not the current problem.

Yes BioFreeze is available here in Oz so will order a bottle to test. The cold water treatment is very good at the moment - and its free!!. Also I have read some people use a those blue gel-like freezer packs on their feet for pain relief so that is worth a try too.

All these are only for temporary relief, but finding the cause is THE KEY - so that is where my energies are directed. Finding that trigger as you suggest.

Regarding Vaccinations - Vivaxim for Hepatitis A / Typhoid in Feb 2013 when travelling to Easter Island. No other antibiotics that I can recall.

You're a real gem - love your holiday pics too.

Cheers from Oz