I have no idea! Maybe if you asked on the Food threads here, a Brit will recognize it and respond. It seems to be basically from England.

HI.

I'll do that when I get a chance. I also found out it comes from mold. I don't think I'll be putting this in my body any time soon.

But I will go and check out the Food threads later on.

Right now, we are getting ready to go into New York City. Getting primped and prepped and Alan has his shoes all ready. He'll be showing them off tonight. Since everybody at the meeting has some kind of neuropathy, they ALL wear special shoes. These shoes make him over 6 feet tall. I always liked walking with a TALL man.

lol

Will update about the meeting. They are going to have a pain management specialist giving a lecture.

Will advise later on.

Melody

Mrs. D. I have to tell you something absolutely fascinating. Do you know that there are people with diabetic neuropathy who wear special custom molded shoes, are on disability, cannot have one day without pain and were never told "you have neuropathy". I had breakfast with such a person this morning. I know him for years. He's 49 and has diabetic. He's also 300 lbs and eats what he wants. He has his reasons. He always says "My feet always hurt me, I wear these shoes I Have LOTS of pairs of these shoes"

I noticed his feet (they were flat) and he wore custom molded shoes.

I said "Do your feet burn?" what kind of pain?" He said "All I know is that they hurt me from my ankle to my toes." All day long, every day and the doctor won't give me anything. I pulled out my jar of Lidocain (which I carry and I have no idea why because I only use it for an ingrown toenail when I go to the podiatrist so he doesn't hurt me, lol). I showed him the lidocain ointment and said "why not ask your doctor if you can use this, I mean, you aren't using ANYTHING".

I then said "Have you ever been told that you have diabetic neuropathy, I mean, were you given a diagnosis as to why your feet hurt you?"

He said 'not really, I never understand the doctor and I know I"m diabetic".

??????????????????????????????

I then went on to describe the various meds that might be indicated for neuropathy such as lyrica, neurontin and the possible side effects. He acted like he knew what I was talking about but then he dove into his plate of potatoes.

So I just continued enjoying breakfast and went on to other topics.

I am amazed that he has never had any kind of emg, whatever kind of test.

Next time I see him (which will be tomorrow morning), I'll ask him if he has ever had the filament test and the tuning fork test by his podiatrist. I mean the guy has custom molded shoes and his feet kill him every day. He's on disability due to his feet.

My goodness

Melody

It is absolutely appalling how people with PN are treated...or should I say IGNORED by the medical community at times!

In the UK its hard as hell to go Gluten free , we are ruled by global entity otherwise known as T-E-S-C-O which is an anagram for COSTE and no Gluten free for you.

m

I sadly agree Mrs. D.

But on another note, I just came back from the PN Support Group in NYC. What a great meeting. We had a pain management specialist giving a presentation on the spinal cord stimulator and he even gave a talk on pumps. And I got the word out to the diabetics to "control their blood sugar", and all about Methyl B-12. All the new people were writing everything down.

It was a good meeting.

Melody

What can you do, other than try to have whistle blowers in there like wikileaks did to report their mismanagement ?

m

I have had quorn and found it horrible. It was the aftertaste and also did not agree with my stomach. I can't really describe the taste. You may like it though. What about making your own bean or veggie burgers? Do you have tofu?