neuropathy in 14yo - Mothering Forums

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#1 of 10 Old 07-12-2009, 06:37 PM - Thread Starter
 
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I am wondering if anyone here may have any experience with "neuropathy" expecially in younger people. My 14yo DD was just diagnosed with "some type of neuropathy" by an neurologist.

It started about a month ago in her left hand, with a pins and needles feeling, then a pain that shoots up to her elbow area. Her hand is a little "puffy" (wouldn't call it swollen). It also gets very red, and splotchy from time to time. A few days later the left hand stated it started in her other hand and then finally in both her feet as well, although they are not half as bad as her left hand which is in almost constant pain. The ped. did an x-ray, and blood work that were both negative.The pedi. was "stumpped" (his words), and sent us to a vascular surgeon, who said he thought is was neurological. The neurologist did a nerve test that didn't show anything, but he said what she's decribing was more small nerve, and wouln't have
shown up. So he prescribed her a generic form of Elivil (sp?) which is an antidepressant, but is also used for nerve pain. He said theses type of things usually fallow an infection or injury of somesort, but DD has not had either. He wants her to take the meds for 6wks, then come back, possably for an MRI to see if its coming from the brain.

(Should add that DD has had no other health problems/issues- besides mild acid reflux)

Thanks for reading all of this, any thoughts or similar experiences?? TIA
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#2 of 10 Old 07-12-2009, 08:33 PM
 
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Get her B12 level checked. Peripheral Neuropathy shows as numbness in the arms/legs, hands/feet & is often caused by a B12 deficiency. If she is taking antacids for the reflux that can cause the body to not absorb B12.
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#3 of 10 Old 07-13-2009, 02:10 PM
 
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Personally, I'd see a classical homeopath. You might also consider homeopathic Hypericum, which is for nerve injuries.


Pat

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#4 of 10 Old 07-13-2009, 03:55 PM
 
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I'm going to go out on a limb here... the reflux could be a food intolerance, and it's possible that the food intolerance is causing inflammation which is causing the neuropathy. I didn't know that food intolerances can cause the range of symptoms that it does. I had back spasms for years, and when I went off dairy, gluten, soy, and corn (the top 4 intolerances), I stopped having the 10-12 bouts of muscle spasms I was having a day. I had been on Lyrica and anti-depressants because of all the pain. Is she eating anything new? Has she had any falls or anything? Did she have "colic" as a baby? Eczema? Poor sleep? Anything like that? Does it get better or worse or is it constant?

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#5 of 10 Old 07-13-2009, 08:16 PM
 
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Hi mama!

Sorry to hear about your dd's neuropathy--I just went through a similar thing, which ended up not being neuropathy but spinal cord related. What I learned the hard way is the importance of being your own detective and bringing up issues with the doctor (like extra tests for example) and getting a second opinion.

Did they run blood tests to rule out conditions that could have caused it? I had the following:
serum B12
ANA
sed rate
c reactive protein
serum immunoelectrophroresis
fasting blood sugar
heavy metal screen (urine)

Sounds like they are saying she has small fiber neuropathy, which can only be diagnosed definitively by a skin punch biopsy. Unfortunately even if it is conclusively diagnosed, there is no really treatment, but symptom management unless there is an underlying cause. That's why the blood tests are so important.

Conditions that neurologists typically will not focus on but should be ruled out are also Celiac's/gluten sensitivity and Lyme.

Here are some neuropathy links that are good:
http://millercenter.uchicago.edu/lea...tpn/typesofpn/
http://www.neuropathy.org/site/PageServer

Laboratory Diagnosis of Peripheral Neuropathy



Gluten Sensitivity as a Neurological Illness:

requires registration, but well worth it!

The Gluten File: (Includes some info on gluten and neurological disease)
http://jccglutenfree.googlepages.com/home

here's the neuropathy subpage from the glutenfile site:
http://jccglutenfree.googlepages.com...eralneuropathy

Let me know if I can be of any other help. There is also a really great peripheral neuropathy forum online, I will PM you the link. Many of the people there have been dealing with PN for years and can direct you to a wealth of research online to discuss with your doctor.

I hope she is taking supportive supplements to promote nerve healing. At the most basic level these would include a b complex but there are many others that can help...you just have to do a little research (I can't think of the others off the top of my head right now since I gave up the peripheral neuropathy chase a while ago!)
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#6 of 10 Old 07-14-2009, 01:34 AM - Thread Starter
 
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Quote:
Originally Posted by CarrieMF View Post
Get her B12 level checked. Peripheral Neuropathy shows as numbness in the arms/legs, hands/feet & is often caused by a B12 deficiency. If she is taking antacids for the reflux that can cause the body to not absorb B12.
Thanks, I read this as well. she stopped taking her antacids awhile ago...but I will still get the B12 checked.
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#7 of 10 Old 07-14-2009, 01:48 AM - Thread Starter
 
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Quote:
Originally Posted by kjbrown92 View Post
I'm going to go out on a limb here... the reflux could be a food intolerance, and it's possible that the food intolerance is causing inflammation which is causing the neuropathy. I didn't know that food intolerances can cause the range of symptoms that it does. I had back spasms for years, and when I went off dairy, gluten, soy, and corn (the top 4 intolerances), I stopped having the 10-12 bouts of muscle spasms I was having a day. I had been on Lyrica and anti-depressants because of all the pain. Is she eating anything new? Has she had any falls or anything? Did she have "colic" as a baby? Eczema? Poor sleep? Anything like that? Does it get better or worse or is it constant?
Thanks for your reply kjbrown92.
We have explored the food allergy/intolerance issue fairly thoughly in the past everything from classic RAST testing, skin tests, and elimination diets. She's always had a "senative stomache", but nothing really specific- no excema, asthma, colic, etc. Her brother had/has multiple food allergies, so we thought we really had something there, but everything was negative or inconclusive. Maybe we should try again, there are a few foods that bother her, she knows what they are but she will still eat them once in awhile- she is VERY STUBBORN! Maybe now she will realize how serious it can be!
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#8 of 10 Old 07-14-2009, 01:50 AM - Thread Starter
 
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Quote:
Originally Posted by WuWei View Post
Personally, I'd see a classical homeopath. You might also consider homeopathic Hypericum, which is for nerve injuries.


Pat
We'll look into it - Thanks!
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#9 of 10 Old 07-14-2009, 02:14 AM - Thread Starter
 
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poetesss- Wow!
Thanks you so much for taking the time to give us all of that information! I will be asking for more testing. I'm really not happy with how the doctor left it, with the typical "medicate" and hope it goes away attitute. I also have to get the blood test results (that were all neg.) and see what exactly they tested for already etc. Unfortunatly we're going out of town tomarrow for two weeks, so we'll have to wait to arrange it, I will be reading all of the info you gave us. (Hopefully I'll have access to a computer some of the time!)


Quote:
Originally Posted by poetesss View Post
Hi mama!

Sorry to hear about your dd's neuropathy--I just went through a similar thing, which ended up not being neuropathy but spinal cord related. What I learned the hard way is the importance of being your own detective and bringing up issues with the doctor (like extra tests for example) and getting a second opinion.

Did they run blood tests to rule out conditions that could have caused it? I had the following:
serum B12
ANA
sed rate
c reactive protein
serum immunoelectrophroresis
fasting blood sugar
heavy metal screen (urine)

Sounds like they are saying she has small fiber neuropathy, which can only be diagnosed definitively by a skin punch biopsy. Unfortunately even if it is conclusively diagnosed, there is no really treatment, but symptom management unless there is an underlying cause. That's why the blood tests are so important.

Conditions that neurologists typically will not focus on but should be ruled out are also Celiac's/gluten sensitivity and Lyme.

Here are some neuropathy links that are good:
http://millercenter.uchicago.edu/lea...tpn/typesofpn/
http://www.neuropathy.org/site/PageServer

Laboratory Diagnosis of Peripheral Neuropathy



Gluten Sensitivity as a Neurological Illness:

requires registration, but well worth it!

The Gluten File: (Includes some info on gluten and neurological disease)
http://jccglutenfree.googlepages.com/home

here's the neuropathy subpage from the glutenfile site:
http://jccglutenfree.googlepages.com...eralneuropathy

Let me know if I can be of any other help. There is also a really great peripheral neuropathy forum online, I will PM you the link. Many of the people there have been dealing with PN for years and can direct you to a wealth of research online to discuss with your doctor.

I hope she is taking supportive supplements to promote nerve healing. At the most basic level these would include a b complex but there are many others that can help...you just have to do a little research (I can't think of the others off the top of my head right now since I gave up the peripheral neuropathy chase a while ago!)
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#10 of 10 Old 07-15-2009, 03:47 AM
 
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B12, definitely! Although what you described doesn't sound like typical MS (the puffiness, redness, etc.) I wouldn't rule it out. (I have MS and it started as pins and needles in one hand which spread to my arm, torso then half my body.)

Me (37) ~ DH (39) ~ DS (3) ~ TTC #2 since 4/10
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