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Old 06-04-2012, 07:45 AM
Idiopathic PN Idiopathic PN is offline
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Join Date: Jan 2012
Location: Jacksonville, FL
Posts: 793
10 yr Member
Idiopathic PN Idiopathic PN is offline
Member
 
Join Date: Jan 2012
Location: Jacksonville, FL
Posts: 793
10 yr Member
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Quote:
Originally Posted by en bloc View Post
I believe you said in other threads that your skin biopsy was done at Hopkins, so I'll assume you are referring to a clinic at Hopkins for the MRI. I don't know whether a 'technician' will know about the DRG Protocol. The radiologist that actually read my MRI was Avneesh Chhabra, MD. He specializes in MR neurography (even wrote a book with the same title). I don't know if you mention a name whether it would help get you this specialized test or not...but it can't hurt. I would ask your neurologist about it (if he is at JH), not the MRI clinic. My test was ordered through my neurologist.

I will add that my neurologist specifically asked them to look at the DRG due to my Sjogren's diagnosis. I have also asked a radiologist on this forum about this protocol. He said he had not heard of it specifically under that name, BUT that a strong enough magnet could definitely see the DRG.

I understand (I really do), the need for a 'cause', but treatment is the key. IF you can find something to alleviate your pain/suffering, then the cause is just a name. It took years and years for a diagnosis of Sjogren's for me. Even though I had known in my mind that there was ONE cause for all my secondary diagnosis, I had given up hope of ever finding out what it was. I was always more concerned with finding a means to control my symptoms. I think we have ALL considered diagnosis for ourselves at some point in our medical journey. Being your own advocate with your doctor is the best thing you can do for yourself. Stay on top of your testing and learn about your symptoms so that you can have productive discussions with your doctor.
My skin biopsy was done here in Jacksonville by my neurologist. However, i was informed the specimen was sent in John Hopkins. The result has the name "THE JOHN HOPKINS MEDICAL INSTITUTION" on its written report . I called the Cutaneous Nerve Laboratory of JOhn Hopkins to get my report which shows the "numbers", but I was asked for a reference number from my doctor.


I agree with you that treatment of the symptoms is very important. But, I am really hoping, while I am still in the "early" stage of my neurological symptoms, to at least find teh cause. I always read that treatment of the cause of the nerve damage is crucial. I am thinking that if we could find the cause now, I may still have the chance to improve. Along side the efforts of finding the cause, I am taking taking actions to alleviate the symptoms by taking the supplements that can help heal the nerves.

Thank you en bloc for all your answers. I hope you will not get tired of replying to my inquries.
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