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Old 10-18-2011, 08:29 AM #21
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There is a fancy medical word for just about everything!

One word you won't hear from doctors is "iatrogenic".

I've been wondering about your daily activities. What do you do for a living and for fun? Sometimes people get exposed to things in the environment, that can cause problems. Even going to the gym too much can cause strains, or pulls.

We are seeing articles now about chlorinated water (swimming pools)
Hot tubs, even wearing dry cleaned chothes alot is implicated in PN.
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Old 10-18-2011, 08:36 AM #22
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Originally Posted by mrsD View Post
There is a fancy medical word for just about everything!

One word you won't hear from doctors is "iatrogenic".

I've been wondering about your daily activities. What do you do for a living and for fun? Sometimes people get exposed to things in the environment, that can cause problems. Even going to the gym too much can cause strains, or pulls.

We are seeing articles now about chlorinated water (swimming pools)
Hot tubs, even wearing dry cleaned chothes alot is implicated in PN.
I dont do anything like that. My life has been pure hell for the last 15 months. I Pretty much work from home and go into the NYc to my sales office 1-2 times a week. I dont work out at all. I just go for works. I am really starting to loose it. I am crying alot because I am scared and in pain. I do see a therapist to help me cope. I wish this nightmare would end.

I want my life back.

this makes nonsense. How did I wind up with this pain? On paper I am healthy. My upper back is burning most of the time, god forbid It gets touched.

Its my sons birthday today and I dont even know how I am going to put on a happy face for him.
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Old 10-18-2011, 08:50 AM #23
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Biofreeze is very cooling. It has a special gel with Menthol and an antioxidant, which block burning signals, for several hours.

Have you tried it? With pain localized in one place it is a good option to try.
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Old 10-18-2011, 09:01 AM #24
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Biofreeze is very cooling. It has a special gel with Menthol and an antioxidant, which block burning signals, for several hours.

Have you tried it? With pain localized in one place it is a good option to try.
On my chest it worked great. On my back I makes it 100x times worse burning.
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Old 10-22-2011, 02:22 PM #25
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MRs. D
Is the ALA and other supplements safe to take long term?

Is there any blood tests I need to take to ensure nothing else is effected by these new vitamins I am taking?
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Old 10-22-2011, 02:40 PM #26
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If you have normal kidneys, the supplements we use here are pretty benign. I don't recommend anything problematic.

ALA is made by your own body. If that starts to fail, the ALA supplement takes over. There is a decade of research on ALA on PubMed...take a look for yourself.

You need to read up a bit on your own and learn about things involving nerves, and how they function.
This thread for example:
http://neurotalk.psychcentral.com/thread121683.html

The drugs people take for PN that they get from their doctors are potentially far more serious than any supplement here.

What I see basically from your posts, is a long term use of Nexium. Then use of SSRIs. Then several invasive mechanical tests involving instrumentation. Be aware that "scopes" used in testing have been contaminated and patients have suffered just from that.
And then after all that, you have a NEW symptom!
http://www.cdc.gov/mmwr/preview/mmwrhtml/00015286.htm

http://blogs.hcpro.com/osha/2010/09/...paign=20100901

This is alarming, and may not be your problem, but you have to realize your current issues have resulted AFTER your procedures.

So if taking ALA or other supplements worry you, then don't.

We offer information here for people to evaluate for themselves.
Several of us know where to find the current research and we share it here. It saves you time, but in no way do we intend for you to follow it all blindly.

Sometimes it is difficult to be objective, and the fresh eyes here can see what you can't. Your first post went into great detail about your testing. I think that is very interesting and revealing and may be a huge clue to your current problems.

I will say I saw recently on another thread of yours, that you went to a masseuse--more than once? I had a masseuse once trigger my shingles ganglia...which for me is in my neck (the shingles went down my right arm initially and that is where my pain is). I'd stay away from massage for a while, to see if that triggered you.

Dr. Latov who is considered the PN expert doctor (with books he has written) is in NYC. You could always consult with him, and take your tests with you that you have so far.

http://www.weillcornell.org/normanlatov/index.html
These are his screening tests:
http://www.questdiagnostics.com/hcp/...eralNeurop.htm
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.

Last edited by mrsD; 10-22-2011 at 03:10 PM.
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Old 10-22-2011, 03:10 PM #27
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Quote:
Originally Posted by mrsD View Post
If you have normal kidneys, the supplements we use here are pretty benign. I don't recommend anything problematic.

ALA is made by your own body. If that starts to fail, the ALA supplement takes over. There is a decade of research on ALA on PubMed...take a look for yourself.

You need to read up a bit on your own and learn about things involving nerves, and how they function.
This thread for example:
http://neurotalk.psychcentral.com/thread121683.html

The drugs people take for PN that they get from their doctors are potentially far more serious than any supplement here.

What I see basically from your posts, is a long term use of Nexium. Then use of SSRIs. Then several invasive mechanical tests involving instrumentation. Be aware that "scopes" used in testing have been contaminated and patients have suffered just from that.
And then after all that, you have a NEW symptom!
http://www.cdc.gov/mmwr/preview/mmwrhtml/00015286.htm

http://blogs.hcpro.com/osha/2010/09/...paign=20100901

This is alarming, and may not be your problem, but you have to realize your current issues have resulted AFTER your procedures.

So if taking ALA or other supplements worry you, then don't.

We offer information here for people to evaluate for themselves.
Several of us know where to find the current research and we share it here. It saves you time, but in no way do we intend for you to follow it all blindly.

Sometimes it is difficult to be objective, and the fresh eyes here can see what you can't. Your first post went into great detail about your testing. I think that is very interesting and revealing and may be a huge clue to your current problems.

I will say I saw recently on another thread of yours, that you went to a masseuse--more than once? I had a masseuse once trigger my shingles ganglia...which for me is in my neck (the shingles went down my right arm initially and that is where my pain is). I'd stay away from massage for a while, to see if that triggered you.
How would the scopes that I had cause the burning in my back?
I am greatful for your help in advising me what Vitamins to take and I have already started to take them for 3 days now. Reason why I asked about blood test to ensure nothing would get out of kilter is because about 6 months ago I was taking B12 500mcg and B6 50 Mg for about 4 months and after getting my B12 and B6 levels checked my B12 was like 1050 and range was from 200-1000 and B6 was 150 and range was 25-125 so I stopped taking them. I just want to avoid having too much in my system.I weaned off LExapro and am just on 1200mg of gabapentin.


I am really at loss as to why I have this god forsaken burning my my back and lower neck. I hope these supplements help but its not like I am defiecent. Plus I dont have any evidence of nerve damage.
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Old 10-22-2011, 03:15 PM #28
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Your B12 was in a good place. You shouldn't have stopped it.

Your B6 is not high either...since the ranges are for people not taking anything. One has to take grams of B6 for long periods of time before any nerve damage occurs. You could get by with your B6 dose 2 or 3 times a week instead of every day if that bothers you.

You really need to read up. That is the only way.

Your burning may be viral...or infectious in some way.

I edited my post you quoted, to give Dr. Latov's reference.
He is in NYC and maybe you should see him.

You are allowing yourself to get upset too much over this. By stressing yourself, you put yourself into high cortisol levels and fuel inflammatory processes. This is a real flare for PNers... all of us understand stress and flare.

Go see a PN specialist and exhaust those tests you did not have yet. There might be answers there for you.
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Old 10-22-2011, 04:25 PM #29
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Thank you. I really appricate all your help.

Its hard to not be stressed when in pain and no one can diagnose whats wrong with you.

I was just about to ask you about Doctors. So for what I have going on he is the best? Anyone else you recommend. I live in longisland and work on NYC so thats nota big deal to go and see him.


*Update* Iwas looking at his reviews at Healthgrades and vitals.com and they are really bad. Has any of the members on this forum used him?
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Old 10-22-2011, 11:53 PM #30
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There are members here who have found neurologists that
are helpful. But by and large, many doctors are not helpful, or even friendly towards PNers.

Some of those members may come on here and share their thoughts. Several have been to Hopkins, successfully.

Glenn goes to Cornell-Weill I believe.

We all have pain to some extent. By learning about PN, we all manage in different ways.

You should be reading the posts here... to get a idea of how you can participate in your own journey with your symptoms.

You have to become a detective of sorts, to find your answers.
And accept the fact that a "diagnosis" may elude you in the end.
There are over 100 causes of PN. Trauma, infectious agents, toxins, drugs, autoimmune and vaccine assaults, metabolic changes, genetic inherited PN, nutritional deficiencies, etc.
In the end when no specific cause can be identified, you end up in the idiopathic wastebasket.
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