[sceptre]

Hi,

I found this forum using a search, and am glad to see that there is such a large community of users to share and encourage each other on this condition.

My sister has had this condition (or is it parathesis?) for over 2 years (she gets tingling, vibration, burning sensations in her feet, hands, face, and other parts of her body, and can't walk/use her hands for too long a time), and in that time, has gone through many tests.

Her nerve reaction times, temperature test, have all been ok, and things like Rheumatoid Arthritis, MS, HIV have been ruled out. MRI didn't show any red flags, but they did find some small white matter lesions in her frontal lobe.

We are currently are guessing it may be Lyme or Celiac, and the next step is going to be to get a Celiac blood test. She did a Lyme test already, but the results aren't 100% conclusive.

The treatment for Lyme would be to start an anti-biotic program, but we want to be conservation and make sure we check everything else that it may be before doing so.

I was wondering then, does anyone have any ideas/suggestions what else we should test/look out for? Are there other infectious diseases that it may be? Other auto-immune type things to check? Other things?

[mrsD]

Welcome to NeuroTalk.

I'd get evaluated carefully for low thyroid. Also have a good long glucose tolerance test-- minor errors in glucose metabolism begin the process of nerve damage.

Also get a B12 test and ask for the numbers. Don't accept "normal" from a doctor, as US testing includes very low numbers which may start a PN process. Should be at least 400 and preferably higher. Also get a Vit D3 test. Low D3 has been shown to affect immune status and nerve function.

Celiac and more commonly gluten intolerance may be present. Gluten intolerance is less severe, but over time leads to neurological problems for those who have it. So getting a Celiac panel is a good idea. Our Gluten forum here has posts asking questions about results and their interpretation. Remember getting the test is only 1/2 of the task. If your doctor does not interpret the tests correctly the testing is useless.

[glenntaj]

--as a starting point, the following articles to provide pathways for differntial diagnosis for peripheral neuropathy--

The Poncelet protocols:

http://www.aafp.org/afp/980215ap/poncelet.html

And the Latov/Quest paper of serological testing:

http://www.questdiagnostics.com/hcp/...eralNeurop.htm

[stagger]

Hello glenntaj,
Thanks for the info, I noticed that amitriptyline was mentioned in the drug use causes in the axonal section. I have been on it for six weeks (low dosage 10mg at night) its great for sleep but is causing mood irritation. For the pain I have gone back to using methadone 10mg twice a day as its the best of the lot I have used (Lyrica, Tramadol, Neurotin), also use a creme constisting of MSM and I have added Naproxen Sodium to the creme and rub it into the feet,legs and thigh as there are very sore and stiff. In six years Of having CIDP it has progressed to using a wheelchair. A lot of folks are attending meetings and able to get out and about having this affliction plus being able to work.

[dahlek]

As is Glenntaj [BTW?-that is a GOOD paper!]
I suggest you & your sister read the quest diagnostics paper and think carefully about all the tests she mite have had or..have not yet had? Are more scheduled?
I speak from experience as I was intially diagnosed with 'peripheral neuropathy, the ideopathic kind' to an autoimmune neuropathy as it kept progressing and heaps of testings lead to my diagnosis.
Right now, your sister's stress is from not being able to do much and feeling like a damp worn out dishrag!
Glenn's Quest paper does point the way about which tests mite be done in either the autoimmune or other areas... But, don't overlook that thyroid either! I had both the autoimmune PN kick off then had a super hypothyroid attack that scares me still in the remembering of it.
Be sure that your sis gets to a really good neurologist - This is a good place to start, depends on where you are...tho?
http://health.usnews.com/best-hospit...d-neurosurgery
Also, she should ask her docs about getting some strength back thru Physical Therapy...best kind is w/orders for 'home exercises' that she could do herself at her own pace - I've found I could do more, w/less stress and exhaustion as I rebuilt some strength and endurance.
First off? You are a super sister for asking! And I hope that you and she are able to get diagnosed and get going on a better track! Don't be afraid to ask questions, they're nothing we've not asked of ourselves or of others.
Hugs and hope to you both! 's - j

[sceptre]

Thanks everyone for the comments/information. Yes, it has been a long/difficult/tiring 2 years for my sister, but she's a very optimistic/happy person, so she's trying to handle it the best she can.

The 2 links are very helpful. I'll need to digest the info and speak with her about some tests that may be helpful.

Nothing immediately pops-out (she's done alot of the nerve conduction, temperature, MRI tests already, and alot of the items she doesn't have the symptoms), but we'll try to narrow things down.