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Old 04-05-2010, 04:50 PM #1
monika monika is offline
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Default Help with Peripheral Neuropathy

I really appreciate having a group like this to learn about this condition and to share knowledge, and encouragement.

My husband has asked me to find out as much as I can about his condition. He had this condition since November of 2009, and he is in considerable pain. But in October of 2008 he started having some other symptoms and I am not sure if they are related. He has asked me to find out as much as I can about this, because it has dramatically changed our lives.
My husband is 43, and has never had any problems medically at all in his life. It all started in October 2008 when he started having a weird itching, it was not really bad just annoying. He went to the doctor and they thought he might be allergic to the laundry soap or have allergies. They said he had high blood pressure and he started taking lisinopril. When all the tests came back negative, his itching got horrible bad in July of 2009. He was sent to a dermatologist who said he had a staph infection in his skin. He was on massive amounts of antibiotics and skin creams. Although the staph infection went away, he still has the same annoying intermittant itching like he started having in October of 2008.
Then in November of 2009 he started having numbness and tingling of his feet. By December it got alarmingly painful. They did a series of tests, and found he had peripheral neuropathy. He is on gapapentin, and oxycodone and xanax. It is like I am living with a invalid because he is so out of it. But I do not say anything because I know he is just trying not to feel the pain. I did find this supplement on the internet and he started taking it a week ago:
from a website called **

We have an appointment with the senior neurologist on Thursday and hope to get some answers. someone told us that the lisinopril may be the cause so my husband stopped taking it 5 days ago.
Any suggestions anyone would have would be greatly appreciated. I did see on the internet this type of socks that have transmitters to help with the nerves of the feet. I wonder if anyone has tried those and if they work. Thanks so much sorry this was a long post. Thanks Monika
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Old 04-05-2010, 08:52 PM #2
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Xanax is not a good drug if you have PN. It causes a withdrawal like syndrome every time it wears off, and it is very much like PN pain, if not PN pain. It can not be stopped cold turkey without severe physical issues.

I hope your husband can find a cause for his PN. Hopefully the neurologist can assist you.
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Old 04-05-2010, 09:16 PM #3
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Default Was the med Xanax or Lisinopril?

Was it for anxiety or for blood pressure? IF the latter? See this:
http://www.merck.com/product/usa/pi_...rinivil_pi.pdf Go to page 11 and read about the side effects. Do they 'fit'?
I would expect, so don't be disappointed? That the doc is either gonna go no problems found, or set you DH up for a slew of tests! Be sure to take a note pad and write what all will be done...and then web up each test and find out how to 'prepare' for them and then know before you go what's to be done. Results? ASK or even DEMAND a copy for your own records! It can't hurt to have such paperwork back-up for the future-never know when it will come in handy [and it does].
I do know that for myself, Gabapentin and I did NOT get along! I was a walking, sort of talking, semi-zombie when I took it.. It took me 3 more tries drug-wise to find something I could have my mind back on. It worked for a few years, then didn't. So I stopped. I now only take pain meds when it's really bad - most things, even the big ones only take a slice off the top of that pain. I've had this PN for 7+ years and others here, wiser than I, have had it longer.
Monika? I truly hope you get the help you need and soon! Keep at it, it's at times hard work? Often down lots of blind alleys, but getting any part of LIFE back is worth it! The sooner the better and I'm pulling for you and your husband! Quick appropriate treatments can help ever soo much and I am hoping that you find them and can get them! 's - j
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Old 04-06-2010, 10:59 AM #4
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Thanks so much I printed that up for my husband. thanks for your support and encouragement. Yes, I am going to be prepared for this appt. I will bring a note pad. I hope I can contain myself and not get too emotional. I hope they just do not say "sorry there is nothing we can do, go home and suffer." My husband is on his last straw. He has a super high tolerance for pain. We have been together for 20 years, and he never was a whiner, ever. One day he had a job site accident in which a skill saw cut his thigh and he required 30+ stitches, he never complained, his coworkers were amazed. But now every time I look at him he is wincing from pain. We have a freelance business ** but Kurt is unable to do anything right now because the pain is a constant distraction since July 2009. This was our dream. Now we only have one customer, and he is very patient, thank God. I told him what I read on this website, that it can get better. The primary care doctor tells him over and over that the pain and numbness is permanent. This is sooooo upsetting for Kurt to hear.
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Old 04-06-2010, 11:05 AM #5
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Thanks Dahlek, I wrote a long response to this but I think I did it wrong and it will not post. Oh well. Thanks for your encouragement. I printed that pdf. Yes, he did get some of those symptoms. I wanted to ask though the doctor tells Kurt over and over the pain and numbness is permanent. This is very very upsetting for my husband to hear. Is this true? Because I am reading posts that say it does get better with treatment. I will bring a note pad to the doctor appt. What should I ask?
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Old 04-06-2010, 06:56 PM #6
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Default The Appointment

Quote:
Originally Posted by monika View Post
I wanted to ask though the doctor tells Kurt over and over the pain and numbness is permanent. This is very very upsetting for my husband to hear. Is this true? Because I am reading posts that say it does get better with treatment. I will bring a note pad to the doctor appt. What should I ask?
Again, may i make mention of the 'Liza Jane' Spread sheets to have with you at your appt. You can print them off....just Google it if you can't find the reference post in the 'stickies' at top of this forum.
By being 'armed' with this, you'll be able to have more ammunition with you in case the Dr DOES do the "I'm sorry nothing we can do" thing. There are MANY things that can be done! And i would NOT accept your Dr telling you this situation is 'permanent'. If he insists on this......have your pad ready and ask him by what diagnostic standards is he making this prognosis. THEN, indicate (Per Liza Jane's spread sheets) WHY can't certain tests be done that haven't been done yet.
Be ready to PIN this Dr DOWN with targeted questions if he's gonna try and write off your husband's situation without digging deeper into PN.
Now maybe you are interpreting your Dr saying "There is no cure for PN" ?
That's One thing. BUT this does NOT mean his condition is permanent!!
Those are two completely separate pieces of information.

And don't worry if you DO get emotional! maybe that's for the better!
This Dr, which I'm sure you are paying top dollar for NEEDS to DO his HOMEWORK and if he CAN'T follow thru, then ask for a referral to another Dr who knows more about PN.
There is absolutely no reason for you and your husband to lose hope.
There ARE answers! There may not currently be a 'cure' for PN.....BUT there are many actions that can be taken to potentially help turn his condition around!
You need definitive reason from this Dr for saying this is 'permanent'. He needs to prove that to you via diagnostic workups and test results.

PLEASE get your hands on these LizaJane sheets I keep harping about! They will equip you with knowing WHAT to ask for !!

Please let us know how the appointment turns out!

Truly caring & Praying
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Old 04-06-2010, 07:03 PM #7
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Default Here is a very insightful link

This is very detailed info about PN:

http://www.ninds.nih.gov/disorders/p...neuropathy.htm

I have a printout of this and refer to it all the time.....

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Old 04-07-2010, 11:29 AM #8
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Yes, I agree, also they have him on oxycontin, which I am very upset about.


Quote:
Originally Posted by cyclelops View Post
Xanax is not a good drug if you have PN. It causes a withdrawal like syndrome every time it wears off, and it is very much like PN pain, if not PN pain. It can not be stopped cold turkey without severe physical issues.

I hope your husband can find a cause for his PN. Hopefully the neurologist can assist you.
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Old 04-07-2010, 12:06 PM #9
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Lightbulb

While the official word of mouth on Fluoroquinolone induced PN
is that it is permanent, Dr. Jay Cohen MD has a communication on his website from a patient who did IV glutathione supplementation, that helped.

http://www.medicationsense.com/artic...ity070508.html

This would not be available from a neurologist, but a holistic doctor or environmental doctor may be doing it in your area.
Glutathione IV is part of a supplement called Meiers cocktails and can be ordered thru some compounding pharmacies.
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Old 04-07-2010, 02:51 PM #10
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Thanks so much I printed that article up and will bring it to the doctor appt tomorrow. Thanks!
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