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-   -   questions re: peripheral neuropathy (https://www.neurotalk.org/peripheral-neuropathy/153265-questions-re-peripheral-neuropathy.html)

flyfishobie 07-08-2011 02:30 PM

questions re: peripheral neuropathy
 
I posted this on general health but am now posting it in the peripheral neuropathy section:
I have had pn for 9 years with it beginning with numbness in my left toe and has since spread up to my lower calves. It is primarily sensory with mild motor nerve involvement. Like most of you, I have had a very thorough work-up with 4 neurologist, including chairman of dept. of neurology at University of Texas Southwestern medical school. Diagnosis, as you might have guessed, is idiopathic axonal peripheral neuropathy. I had a lumbar puncture that showed borderline protein elevation but failed to benefit from a regiment of IVIG.
I have 4 questions:
1.Have any of you experienced improvement of symptoms for no reason followed by a sudden worsening for no apparent reason with this cycle repeating itself.
2. Recently, I've started to experience some numbing of the lips and tongue. Have any of you experienced that.
3. I have had elevated C-reactive protein off and on since I have had pn. Is crp ever associated with any types of pn.
4. Has anyone ever found therapeutic benefit from Tumeric

JB63 07-08-2011 04:39 PM

Quote:

Originally Posted by flyfishobie (Post 784843)
I posted this on general health but am now posting it in the peripheral neuropathy section:
I have had pn for 9 years with it beginning with numbness in my left toe and has since spread up to my lower calves. It is primarily sensory with mild motor nerve involvement. Like most of you, I have had a very thorough work-up with 4 neurologist, including chairman of dept. of neurology at University of Texas Southwestern medical school. Diagnosis, as you might have guessed, is idiopathic axonal peripheral neuropathy. I had a lumbar puncture that showed borderline protein elevation but failed to benefit from a regiment of IVIG.
I have 4 questions:
1.Have any of you experienced improvement of symptoms for no reason followed by a sudden worsening for no apparent reason with this cycle repeating itself.
2. Recently, I've started to experience some numbing of the lips and tongue. Have any of you experienced that.
3. I have had elevated C-reactive protein off and on since I have had pn. Is crp ever associated with any types of pn.
4. Has anyone ever found therapeutic benefit from Tumeric

I was worked up for CIDP, which was thrown out with my negative spinal tap and blood work. It was initially diagnosis and I was told by my neuro that it was a disease that could wax and wane on its own. My motor neuropathy is axonal also, but I am mostly motor, bilateral legs, lumbar sacral nerve inflamation. Cause still not determined.

mrsD 07-08-2011 04:49 PM

Enhanced forms of curcumin are the best, since this active antioxidant is not well absorbed without help.

This one is an example:
http://www.epic4health.com/cuul500mgena.html

one of these a day may work better than non-enhanced types.
The best one out there is by LongVida and around 70 dollars in the past.

https://www.prohealth.com/shop/produ...n=Froogle_Feed

This link above has it for 1/2 that which is a new price.

C-reactive protein is a marker for inflammation in the body.
The only supplement I know that reduces it is Vit C.
Using the non-acidic Ester C, may be an option for you before you have another test. Vit C has shown some neuroprotective effects in trauma/surgical patients having foot or wrist surgery and has prevented RSD, in many patients. So it somehow blocks the damaging free radicals around nerves. It also lowers C-reactive protein about 25%.

JB63 07-08-2011 05:28 PM

mrsD, what do you think about ginger as an anti inflamatory food supplement?

Sounds like a good dish of curry should replace the old apple a day.

I use the generic equivelant of Emergen-C. I find it easy to tolerate.

nocure 07-08-2011 05:41 PM

Quote:

Originally Posted by flyfishobie (Post 784843)
I posted this on general health but am now posting it in the peripheral neuropathy section:
I have had pn for 9 years with it beginning with numbness in my left toe and has since spread up to my lower calves. It is primarily sensory with mild motor nerve involvement. Like most of you, I have had a very thorough work-up with 4 neurologist, including chairman of dept. of neurology at University of Texas Southwestern medical school. Diagnosis, as you might have guessed, is idiopathic axonal peripheral neuropathy. I had a lumbar puncture that showed borderline protein elevation but failed to benefit from a regiment of IVIG.
I have 4 questions:
1.Have any of you experienced improvement of symptoms for no reason followed by a sudden worsening for no apparent reason with this cycle repeating itself.
2. Recently, I've started to experience some numbing of the lips and tongue. Have any of you experienced that.
3. I have had elevated C-reactive protein off and on since I have had pn. Is crp ever associated with any types of pn.
4. Has anyone ever found therapeutic benefit from Tumeric

I cannot imagine suffering 9years with this problem becaus i am ready to go crazy but I have not experience any improvement mines symtoms have gotten worse since my treatment of the pain specialist. My numbness stayes in my leg and travels to my feet. so I feel your pain and hope there is a cure sooner or later

mrsD 07-08-2011 06:31 PM

I've never tried high doses of ginger... but I have used it for nausea control once in a while.

It tends to make my stomach burn sometimes... and if I lie down, I sometimes reflux it...and that is an EXPERIENCE let me tell you!

But it is supposed to work to some extent. You just cannot use it if you take any blood thinning drugs.

Here is a good monograph on it:
http://www.umm.edu/altmed/articles/ginger-000246.htm

It is very inexpensive... Puritan's has it for a "song".


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