Just diagnosed with PN
 

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.

I just wanted to welcome you. This is a warm and wise community.I have not heard of celebrex causing pn but maybe someone else can offer insight. Have you had other complete bloodwork?Many of my tests have come back negative too. It is frustrating and scary I do know. I will say that my 2nd emg/nc/ssep did show more then the previous one only months before. Well welcome

Thanks for the welcome. I am not sure exactly what all blood tests have been done. The nurse just calls back and said everyting is okay. I will be certain to get copies of my medical file at my next neuro visit. I saw lizajane's list that she developed to capture her medical hsitory. I have downloaded that and will definately use it.

I can honestly say that I am petrified! I have read millions of internet sites with all the bad news. This is the only one that has given me any hope.:)

Hi Leslie & welcome to this forum, a fasting glucose test doesn't test your systems reponse to a glucose challenge like the GT test does, in the beggining of my PN troubles, a doc said my fasting glucose was normal, no sign of diabetes whats so ever but later on when i had the GT test, it showed i was prediabetic & it was the cause of my troubles, i am glad your still going to have it just in case.
Iv'e also have never heard of Celebrex causing PN, actually i was giving 6 celebrex per day in the early undiagnosed days of my pn and they helped a lot.
I wish you my best in finding the culprit.
Brian :)

Thanks Brian, for the info. I didn't think that celebrex was the casue of my PN but was just wondering. I did find a case study that indicated that 1% of those in the test group did develop PN so who knows. How is your PN doing since you found out the cause? Is it getting better?

Hi Terry:

Since you have just been diagnosed, I hope they do a B-12 level test on you. It's a regular blood test and they can tell your B-12 level.

Since I was diagnosed with Diabetic Neuropathy last year, I IMMEDIATELY began taking Methyl B-12. I get it on Iherb.

Stopped the burning (don't know if you have that). I did have the pins and needles for a while, but I only get burning if I am stressed.

In MY case, the Methyl B-12 did the trick.

It gives you lots of energy also.

I take 5000 each morning sub lingually.

Best thing I ever did once I got the diagnosis of Diabetic Neuropathy.

I've been diabetic for 20 years.

It's controlled but what the heck, it comes with the territory. PN I mean.

Some people get numb, some get pins and needles, some BURN.

I got the pins and needles and buzzing first. Then the burning. That's pain in the neck believe me.

So check into your B-12 level.

The levels that THEY SAY ARE NORMAL, well they are not normal.

My last B-12 level test said I have a B-12 level of 2000.

This means I store it well.

So welcome to our glorious group.

Take care,

Melody

B-12 levels
 

MelodyL -

I don't know what blood tests have been done. The neuro said "we did all the standard blood tests and they came out fine." I guess I was to stunned about the diagnosis to ask many questions. I will not make that mistake again. I have appt. this week and will be asking lots and lots of questions...

What should out B-12 levels be? Although they said the blood work for diabetes was fine I made them schedule a glucose tolerance test for next week.

B-12 question
 

MelodyL-

Do you take 5000 mcgs or mgs? I'm new to all this and sometimes misunderstand the "technical/medical" terms you use. LOL

Also, I have read the labeling on several bottles of B-12 to determine which to buy. I can't tell if they have the metyl... or the cyano...can you offer up a brand name so I can make sure I'm getting the right thing?

Thank you!

Hi Leslie, yep, who knows... i read some were that the medication [ Endep ] that is very commonly used for neuropathy patients could also cause neuropathy, i used it for 5 years and it didn't harm my nerves at all... in answer to your question, i am doing real good my neuropathy is 99 % gone these days, i wrote my story up in the " Neuropathy does improve " section, up top on the front page.
With the serum b12 test, the Japanese pn experts say a score of anything below 500 is suspicious of b12 defiency.
best of luck anyway
Brian :)

Hi there.


5000 mcg

Click on this link. This is what I take every single morning. Wouldn't be without it if my LIFE DEPENDED ON IT, AND IT DOES!!!

http://www.iherb.com/ProductDetails....1&pid=117&at=0

Now after I began taking this, and my level reached 2000, I was told that because I store this so well, I could take one every other day.

Tried that (also tried the cheaper brands, WHAT A DIFFERENCE THAT MADE!!!). No, I take the Jarrows forumula and it works just fine.

One of my learned friends on this forum just explained the whole thing to me.

5000ug = 5mg = 0.005g.
5000mg = 5g

I don't understand this. But I'm just passing along the info.

I take 5000 mcg under my tongue each morning.

Does the trick FOR ME.

May not work for other people, but for me, it helped tremendously.

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

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

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

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

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!

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

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 :)

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

Question Erythromelalgia
 

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.

OMG. My PN gets worse over the day too. Being at it's worse at night. My feet are swollen, and burn. The drugs they are using are not doing much.
Do you mind me asking what were your symptoms... like how red were your feet, and is you have to be relieved by elevation/cooling?
Thanks!

Hi I have to say having read this that you are the nicest most positive people I have encountered since my diagnosis. You give hope and really sound advice and somehow you take the fear away, thank you for that. The best of luck in your tests I'm sure now that you know what to ask there will be no stopping you, go for it. x