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Unread 12-31-2012, 10:32 AM   #1
Byoungda
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Join Date: Dec 2012
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Default Hello to all!

I am so thrilled to find this forum. I have been reading almost non-stop over the past few weeks and have found such a caring group of people. I feel comfortable sharing my journey and feel I will gain greatly from all.

My diagnosed ailments are Sjogrenes, Raynauds, GERD, and now Peripheral Neuropathy. My journal began about 6 years ago when my fingers were white and then an awful blue. The doc said it was Raynauds and began lots of tests trying to determine the correct auto immune disease. Finally after a couple of years it was determined to be Sjogrenes as well as GERD (which also included hiatal hernia, asthma and dry eyes, mouth). I was put on a Protonix (PPI), Procardia, Proventil, and Lasix and sent to a rheumatologist.

This last year the nightmare has begun. Started with not being able to tolerate the sheet touching my feet at night. They were cold "inside" but warm to touch. Doc said PN and started me on Neurotin. Then worsening symptoms. He just kept increasing dosage until I felt wonky all the time and didn't like my own personality any more. I've never had a great tolerance for meds so I began a quest to find alternative measures to no avail.

It's a nightmare to go to work each day when I can barely walk. I tried buying shoes with a wide toebox, then tried diabetic socks buts the texture hurts to walk on. I try to explain this to others and get "the look." After reading here, I know I'm understood.

Here's what I believe I need to start. Please add or steer me on a different course if needed.

Add Benfotiamine, Alpha Lipoic Acid, Acetyl-L-Carnitine. I already take fish oil, multi, B complex.

I want OFF the Neurotin as well as Protonix (PPI). I did stop the Procardia and now take Cinnamon capsules (it works and I can now make it through the grocery store without going white)!

ANY and ALL advice will be greatly appreciated. The pain is worsening and i'm sitting here at work right now with shoes off and dreading having to get up and even walk with my current socks.

Regards,
"Painful in North Carolina"
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Unread 12-31-2012, 10:41 AM   #2
mrsD
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Welcome to NeuroTalk:

Are you still taking that Lasix?

It will deplete magnesium, potassium and thiamine B1 when used frequently.
You are already on the benfotiamine, and that is good. It will take a month or two to fix any thiamine loss.

But I do think you need a magnesium supplement.
Choose any chelate, except for OXIDE form, which does not work.
You can get SlowMag easily OTC and use it twice a day or use a lotion like Epsom-It --which is available online from several places. The body lotion form has no fragrance and probably would be better for you.

Then you need testing for B12 and Vit D. Get the NUMBERS for your results because labs in US are still reporting lows as "normal" and doctors don't understand this. If you are less than 400pg/ml consider an oral supplement of high dose activated B12 called methylcobalamin.

If you are low in Vit D don't use the RX D2 form, and get OTC D3. Doctors fail at this one too.

This is our PN forum, where there is lots of information to read, and a subforum above it, with most of the information posts:
http://neurotalk.psychcentral.com/forum20.html

This is my magnesium thread:
http://neurotalk.psychcentral.com/thread1138.html

Acid blocking drugs like Protonix will block absorption of
B12
folic acid
zinc
magnesium
iron
calcium

This is what we know so far. All are dependent on acid being present for normal absorption from food.

Hope to see you at PN....
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Unread 12-31-2012, 10:59 AM   #3
Byoungda
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Default

Yes I'm still taking lasix but will be more than happy to stop. I had a strong feeling that I was not getting the benefit from what I was taking. Can't wait to get online and start 2013 on the right course of action.

I'm so excited! Just to know i'm not in this boat all alone is exciting as well! I'll keep reading and will update the forum on my progress.
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Unread 12-31-2012, 11:45 AM   #4
Byoungda
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Default Thanks for information

Thanks so much MrsD. I found my last test results and you are so right. My Vit d was 24.2 and even on the report says insufficient but doctor said normal. My B12 result was 562. I'll stop the lasix.

I will begin with your suggestions for what to order online and keep reading the links you provided.

If I could just keep my toes from touching I would be a happy camper today.

I'll keep updating and learning more from the group.
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Unread 12-31-2012, 11:57 AM   #5
mrsD
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I think you should be taking 300mg of benfotiamine for a couple of months, then as you improve, you can back down to 150mg a day.

The magnesium is critical. Lasix is a major depleter!
You can soak in epsom salts, daily and that will help faster.
Don't use HOT water, --use lukewarm only.

You'll notice an improvement right away, I betcha!
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aka mrsdoubtfyre
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

.
Gray squirrel doing a one foot maneuver to the suet feeder. Hubby calls him the Cirque du Soleil squirrel. LOL
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Unread 01-01-2013, 02:05 AM   #6
Darlene
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"Painful in North Carolina",

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.
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Unread 01-01-2013, 08:04 PM   #7
Rrae
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Quote:
Originally Posted by Byoungda View Post
I am so thrilled to find this forum. I have been reading almost non-stop over the past few weeks and have found such a caring group of people. I feel comfortable sharing my journey and feel I will gain greatly from all.

My diagnosed ailments are Sjogrenes, Raynauds, GERD, and now Peripheral Neuropathy. My journal began about 6 years ago when my fingers were white and then an awful blue. The doc said it was Raynauds and began lots of tests trying to determine the correct auto immune disease. Finally after a couple of years it was determined to be Sjogrenes as well as GERD (which also included hiatal hernia, asthma and dry eyes, mouth). I was put on a Protonix (PPI), Procardia, Proventil, and Lasix and sent to a rheumatologist.

This last year the nightmare has begun. Started with not being able to tolerate the sheet touching my feet at night. They were cold "inside" but warm to touch. Doc said PN and started me on Neurotin. Then worsening symptoms. He just kept increasing dosage until I felt wonky all the time and didn't like my own personality any more. I've never had a great tolerance for meds so I began a quest to find alternative measures to no avail.

It's a nightmare to go to work each day when I can barely walk. I tried buying shoes with a wide toebox, then tried diabetic socks buts the texture hurts to walk on. I try to explain this to others and get "the look." After reading here, I know I'm understood.

Here's what I believe I need to start. Please add or steer me on a different course if needed.

Add Benfotiamine, Alpha Lipoic Acid, Acetyl-L-Carnitine. I already take fish oil, multi, B complex.

I want OFF the Neurotin as well as Protonix (PPI). I did stop the Procardia and now take Cinnamon capsules (it works and I can now make it through the grocery store without going white)!

ANY and ALL advice will be greatly appreciated. The pain is worsening and i'm sitting here at work right now with shoes off and dreading having to get up and even walk with my current socks.

Regards,
"Painful in North Carolina"
Welcome to NT!

You've found the perfect place for support and understanding!
When I first came here feeling all alone, I felt as tho I hit a goldmine when I found the Peripheral Neuropathy forum! It is LOADED with great support and lots of information.

Hope to see you there!
It's great to have you!

Rae
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