SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
Neuropathy DX ????? New Here
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This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

Founded by MrsAristotle on October 2, 2009
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Neuropathy DX ????? New Here

Hello to all of you! My name is Geneva, aka Gege. I started having numbness, tingling, & crawling senations in both of my hands, face (starting at my chin) slowly moving up my arms & up my face up to my eyebrows. This was November 19th 2012. Seen a neurologist on the 26th. Had blood work done, MRI (no contrast) MRA of neck, EMG/NCS of left arm. Everything came back normal. Since the 26th my sensations have changed, they are isolated to certian areas of my arms & face, but no longer consume the entire limb. I do have pain that runs up & down my left arm. I have taken Neurontin (gabapentin) for over 1 year for that. Never before have I had these sensations in my right arm or face. It was only my left. Now I have these sensations in my feet & ankles. Muscle twitching, tremors. Sometimes I feel like I'm shivering (like I was cold, but feel warm), other times it happens when I try to press down on the gas/brake pedal. Left arm & hand is weak. Today I spoke with a lady from my Dr.'s office who told me that my Dr. has DX me with neuropathy. My appointment with him is on the 31st of this month. My question is, How could he come to this conclussion with these normal results? Should I request something else? Should I find a new Dr.? He has ruled out everything in his "specialty". But has not tested or ruled other neurological disorders. I'm kinda lost. Just need advice.

Thank You, Gege
1 Comment
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1530171_tn?1362547225
Hi Gege and welcome to the forum.

Neuropathy is not really a disease, but rather a combination of symptoms,
with a wide possibility of causes.
In your case it would be likely classified as  Idiopathic Peripheral Neuropathy, if you like to look it up and see if it resonates with you.
(as the cause is unknown and is affecting mostly your Peripheral Nervous System.)
One thing that needs to be ruled out is various deficiencies like
D3, B complex specially  B12 , Tissue Minerals specially Magnesium levels, Potassium, Neurotransmitters etc.
Also heavy metal toxicity need to be ruled out.
Have you been tested for HLA?(as some types are linked to various auto-immune conditions)

Also in the absence of other findings in standard tests, underlying undetected low grade infections are suspect.
The pathogens involved in these infections can wreak havoc in the nervous system and  sometimes almost impossible to detect with standard testing.

Please give us your thoughts and if you can offer us a more detailed
account up to this point, including any significant events prior to the onset of your Neuropathy, it might be helpful.

Meanwhile enjoy your friends and family during the holiday season,
as much as possible.

Cheers!
Niko
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