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Old 06-01-2017, 12:16 AM #1
liquidz1 liquidz1 is offline
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FML ...Went to do the nerve conduction test and got results from the doctor.No Nerve damage and no blood abnormalities,now hes thinking restless leg syndrome.Even though im burning/tingling 24/7 both feet and hands and keeps spreading.Dont know what to do now...feel so lost.
Here in Australia they don't to nerve biopsy or at least that i know of,only sweat test,which not many places do.
At the moment im on like 450 mg of lyrica which is doing jack all.Im only 27..
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Old 06-01-2017, 07:37 AM #2
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Nerve biopsies are available here.

The phone number at the bottom of this link might help you to track down somebody who does them in a place which is convenient for you Nerve pain diagnosis | healthdirect.
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Old 06-05-2017, 01:16 PM #3
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Hi and welcome.
From my understanding of Restless Leg Syndrome it does not include burning. It usually occurs at night and causes the person to have an Uncontrollable need to move usually their legs. That's why their magazine is called "NightWalkers."

I have read that people can have peripheral neuropathy and secondary RLS. I don't believe it is that uncommon and in fact I've been diagnosed with both. Pubmed had some studies that I remember seeing about this.

Hope this helps. If you want PM me. I had first thought my primary condition was Restless leg syndrome and did some research I could share. This being a PN forum I would not post it here. Carol
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Old 06-06-2017, 09:27 AM #4
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Quote:
Originally Posted by liquidz1 View Post
FML ...Went to do the nerve conduction test and got results from the doctor.No Nerve damage and no blood abnormalities,now hes thinking restless leg syndrome.Even though im burning/tingling 24/7 both feet and hands and keeps spreading.Dont know what to do now...feel so lost.
Here in Australia they don't to nerve biopsy or at least that i know of,only sweat test,which not many places do.
At the moment im on like 450 mg of lyrica which is doing jack all.Im only 27..
If your emg is normal, you may have small fiber neuropathy.
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Old 06-06-2017, 08:46 PM #5
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My Immunologists says:

"We use the tests we have, not the tests we need."

Remember, many of the conditions we CAN diagnose today, didn't even exist 75 years ago, because there was no knowledge, or research, or ultimately tests and diagnosis. People of course were SUFFERING, but almost in total isolation.

AND good testing and diagnosis do NOT mean treatment or cures.

We live in an ever expanding universe of understanding of the Immune System, but the Universe is only partially mapped.

Many of us live our lives in the 'unmapped areas'.

I was 72 years old before I was diagnosed with Primary Immune Deficiency Disorder and began treatment (IVIG every 4 weeks) which actually does boost my immune system. The treatment cost is over $20,000 every 4 weeks, for life. This is the pricetag of freedom from constant infections and illness.

But bolstering my Immune System so I don't get sick, does not prevent it from attacking my organs/systems.. To date there is not treatment or prevention of the damage to my ears, my moisture system (mouth and eyes), lungs, bladder, and the major nerves in my legs (PN) and the Small Nerves in my skin (SFN).

On EMG I have NO signal from two major nerves (Profound Neuropathy) and very poor signal from the third (Severe Neuropathy). I walk with a walker and am very disabled.

I take 3600 mg of gabapentin a day to keep me almost entirely free from the 'cage of fire' that is my skin from the SFN.

So if you are not finding the cause of your misery and doctors are frustrated and perhaps 'dismissive', know that you are absolutely NOT ALONE.

I recommend the book How to Be Sick by Toni Bernhard.

Regards, Elaine
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