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Old 07-23-2008, 12:48 PM #11
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Smirk B-12 Methyl

Thank you, thank you, thank you!

I had severe burning all weekend. My sweet husand went on a made dash and found some for me. May all be in my mind...but I do feel about 50% better today! Enough to go back to work...

Had a dr. appt this a.m. and he asked about the B-12. He said "well, okay, it can't hurt..." Wish I had a hammer....I'd have hit him. The B-12 is doing a darn site more than the neurontin, tramadol and the amitiptylene he perscribed....

Leslie
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Old 07-23-2008, 01:27 PM #12
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Hi:

Can someone tell me when the best time of the day is to take Methyl- B12? and with food or without?

Thank You
Nancy
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Old 07-23-2008, 03:03 PM #13
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I take it upon waking up in the morning (ON AN EMPTY STOMACH). It has no food to interact with, so it gets absorbed. That's the same question I asked when I first bought it and I was told to take it in the a.m. on an empty stomach.

Others do it different and take it before bed time.

But for me, (and I've been doing this over one year, I believe). it does the trick.

And you will rarely ever find a physician who will say: "oh, yes, go out and buy Methylcobalimin and it will stop your burning".

THEY DON'T DO THIS. They practice medicine. They haven't really delved into supplements, and minerals, and vitamins, etc.

But we do and we learn lots of cool stuff in this forum.

I know I did.!!!

Take care,

Melody
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Old 07-23-2008, 04:10 PM #14
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Hi Melody:
Thank You for your reply. I was reading somewhere else to avoid coffee when taking it. So I just wondered when others were taking it.

My husbands B12 level is 239. His feet are numb and tingling and his one hand a couple fingers on it has started to be numb also.
Thanks again
Nancy
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Old 07-25-2008, 09:40 AM #15
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Default Lyme Disease video!

Hi Terry,

I saw this YouTube video yesterday about a guy who has Lyme disease and had fluid on the knee as one of his major presenting symptoms I will post the link:
http://www.youtube.com/watch?v=tiZOF_jQe50&feature=user

Have you ever had a tick bite, which is the basis of Lyme Disease? There are lots of YouTube vids on Lyme.

Obviously there are probably many reasons for fluid on the knee but seeing that you have also been diagnosed with PN just thought I'd mention it!
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Old 07-25-2008, 10:09 AM #16
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I take it with just a glass of water, about 40 minutes before I go out to have breakfast. I have only one cup of coffee in the morning. That's it for me for the day.

Regular coffee, with a bit of french vanilla thrown in. It's heaven.

Since I don't have any caffeine for the rest of the day IN ANYTHING, I don't feel I have to give up my morning coffee.

But if I had heart palpitations or anything like that, well of course coffee would go out the window.

But for now, I enjoy my coffee, and it doesn't interfere with the B-12 that I take first thing in the a.m.

Take care,

Melody
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Old 07-25-2008, 04:40 PM #17
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Thanks Melody he has been taking 2000mcg quite early in the morning (5am).

He also is still taking the other kind cyanacobalamin with his supper, don't know if any of it is doing any good but we will use them up .

So along with the injection once a month I hope it helps. He has only been on the Methyl a couple of days ans says he can't tell any difference yet in either being less tired or the numbness.

Thanks again
Nancy
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Old 07-25-2008, 08:51 PM #18
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2000 did not do ANYTHING for me. I noticed the difference right away.

I take 5000 under my tongue in the a.m.

For me, this is the correct dosage.

Just wanted to share.

Melody
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Old 08-12-2008, 06:46 PM #19
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Default Question Erythromelalgia

Quote:
Originally Posted by TerryH View Post
I am so glad I found this site! I was diagnosed with PN 2 months ago. I am still going through the battery of testing to see if the cause can be determined. So far all tests are negative for any problems. I have a glucose tolerance test scheduled for next week even though my neuro doc said I didn't need it. The blood test he did for diabetes was a 95.

I took celebrex for two years becasue of a diagnosis of arthristis in my right knee. I quite taking it the first of June because the ortho doc indicated I don't have any arthritis but fluid on the knee. Has anyone heard of Celebrex causing PN?

My seems to be spreading quickly. I have tingling, numbness and buring in both legs and feet, both arms and hands, right side of my face and in my back.


Hi Terry,
As your symptoms sound similar to mine I am wondering if you might have a form of PN called erythromelalgia. Although this condition is most common in the feet it can also spread to other parts of the body. There is a genetic form of the condition but it can also be idiopathic. The main symptoms are heat, redness and burning sensations that are usually worse with activity and often worse as the day progresses. It is usually considered to be a form of small fiber neuropathy and can start gradually with slow progression or come on quite suddenly and severely. Symptoms are often relieved with cooling.
The usual PN drugs are used and can help to a greater or lesser degree - one has to experiment. There is an on-line support group for EM. Can provide more info if you wish.
Priscilla
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Old 08-12-2008, 07:21 PM #20
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Quote:
Originally Posted by Capsilla View Post

Hi Terry,
As your symptoms sound similar to mine I am wondering if you might have a form of PN called erythromelalgia. Although this condition is most common in the feet it can also spread to other parts of the body. There is a genetic form of the condition but it can also be idiopathic. The main symptoms are heat, redness and burning sensations that are usually worse with activity and often worse as the day progresses. It is usually considered to be a form of small fiber neuropathy and can start gradually with slow progression or come on quite suddenly and severely. Symptoms are often relieved with cooling.
The usual PN drugs are used and can help to a greater or lesser degree - one has to experiment. There is an on-line support group for EM. Can provide more info if you wish.
Priscilla

Priscilla - thank you! I would love to have more info. When I wake up in the morning I actually have little or no symptoms of PN. You are correct, as the day progresses (and activitiy) I begin to burn more and more. My toes now feel like I am walking in the snow and the tops of my feet burn. My shins burn as do my forearms. The palms of my hands now sorta throb (that is the best description I can think of). The top of my hands burn also...

I would love to find anything that would help with this.
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