Is there a new blood test to determine cause of neuropathy?

Posted by arflmi33 @arflmi33, Jul 19 2:06pm

Someone just posted on Facebook that their neurologist had ordered "a new blood test from Mayo" that can determine what *caused* their peripheral neuropathy. There was no specific information provided. Does anyone know whether there is actually a new blood test from Mayo that can do this?

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Profile picture for SusanEllen66 Susan McMichael @SusanEllen66

@johnbishop Demyelinating neuropathy is different than your “everyday” version I believe.

My father had CIDP, Chronic Idiopathic Demyelinating P….. (I forget the word). Anyway, he was in terrible pain because the myelin sheath was wearing away off his nerves.

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@SusanEllen66
Hello-
I was told I have CIDP and get terrible foot pain which makes it very difficult to walk. It can last days then it goes away until I do something that irritates it. My doctor thinks I should consider an infusion and I’m afraid to try it. I’m currently taking gabapentin that helped a little but doesn’t seem to be doing much now. I do not want to up my dose. What did the doctors suggest for your father? Anyone else in this group have CIDP?
Thank you for any info. I’m frightened by this since I have so many other medical issues going on at this time

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How helpful would it be to know the cause of your neuropathy since there are no cures and treatment doesn’t seem to vary much as far as I can tell. Unless it’s caused by a vitamin deficiency which is detectable by a simple blood test, what can be done?

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Profile picture for daj3333 @daj3333

How helpful would it be to know the cause of your neuropathy since there are no cures and treatment doesn’t seem to vary much as far as I can tell. Unless it’s caused by a vitamin deficiency which is detectable by a simple blood test, what can be done?

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@daj3333 I finally found the cause of my small fiber and peripheral neuropathy after 10 years. I found the right neurologist who did 3 hours worth of testing and tests later, he was able to tell me things that have changed my life. Is there anything that I can do about the past nerve damage no, but the supplements I am taking are helping me and the tumor on my spine is not causing me any problems at this time. I found this neurologist when I was visiting my dermatologist so it was a coincidence but a divine intervention for sure. This happened in the last few months so I'm still trying to make adjustments and going to PT since December. I have a brace that was made for me and will be here on Friday so I can't wait to learn how to use it and see if it doesn't help me get around better.

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Profile picture for daj3333 @daj3333

How helpful would it be to know the cause of your neuropathy since there are no cures and treatment doesn’t seem to vary much as far as I can tell. Unless it’s caused by a vitamin deficiency which is detectable by a simple blood test, what can be done?

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Profile picture for positivethinking @positivethinking

@SusanEllen66
Hello-
I was told I have CIDP and get terrible foot pain which makes it very difficult to walk. It can last days then it goes away until I do something that irritates it. My doctor thinks I should consider an infusion and I’m afraid to try it. I’m currently taking gabapentin that helped a little but doesn’t seem to be doing much now. I do not want to up my dose. What did the doctors suggest for your father? Anyone else in this group have CIDP?
Thank you for any info. I’m frightened by this since I have so many other medical issues going on at this time

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@positivethinking I’m sorry to hear about your pain.

My dad did go for monthly infusions. He wouldn’t take the Gabapentin because you can’t drink alcohol.
He was an alcoholic. So, he was in pain much of the time.
12 years ago today, he got hit by a car while crossing the street and died. He was 85. I believe he was walking too slow, and the driver didn’t see him.

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Profile picture for SusanEllen66 Susan McMichael @SusanEllen66

@positivethinking I’m sorry to hear about your pain.

My dad did go for monthly infusions. He wouldn’t take the Gabapentin because you can’t drink alcohol.
He was an alcoholic. So, he was in pain much of the time.
12 years ago today, he got hit by a car while crossing the street and died. He was 85. I believe he was walking too slow, and the driver didn’t see him.

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@SusanEllen66 I’m so sorry to hear about your father. How tragic

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Profile picture for positivethinking @positivethinking

@SusanEllen66
Hello-
I was told I have CIDP and get terrible foot pain which makes it very difficult to walk. It can last days then it goes away until I do something that irritates it. My doctor thinks I should consider an infusion and I’m afraid to try it. I’m currently taking gabapentin that helped a little but doesn’t seem to be doing much now. I do not want to up my dose. What did the doctors suggest for your father? Anyone else in this group have CIDP?
Thank you for any info. I’m frightened by this since I have so many other medical issues going on at this time

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@positivethinking

I was diagnosed with CIDP 3 years ago. I have had the IGIV infusion for 1-1/2 years and didn't see much improvement. Then I went on 12 weeks of corticoid steroids. Nothing. I am then went to Rituximab infusions every 6 months. I see improvement right after the infusion, but only for about 3 months. Currently I am waiting to get into a Clinical Trial. I take 200mg of Gabapentin every night to alleviate some of the pain. I don't like being foggy headed, but I have to have some relief.

I went to the Mayo Clinic in Rochester, MN and was confirmed as CIDP.

Good luck to you. I am always around to talk.

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Profile picture for crnelson @crnelson

@positivethinking

I was diagnosed with CIDP 3 years ago. I have had the IGIV infusion for 1-1/2 years and didn't see much improvement. Then I went on 12 weeks of corticoid steroids. Nothing. I am then went to Rituximab infusions every 6 months. I see improvement right after the infusion, but only for about 3 months. Currently I am waiting to get into a Clinical Trial. I take 200mg of Gabapentin every night to alleviate some of the pain. I don't like being foggy headed, but I have to have some relief.

I went to the Mayo Clinic in Rochester, MN and was confirmed as CIDP.

Good luck to you. I am always around to talk.

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@crnelson
Thank you for the info. I don’t hold out much hope for relief. Hard to find a good neurologist locally

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I fired my 1st neurologist. I have a good, aggressive one now.

Where are you located?

So little is known about CIDP and so few doctors that are in the know that I pretty much think we hit a wall all too often. That is one of the reasons that I went to the Mayo Clinic. They were wonderful and I really felt that they listened to me. They are working with my team of doctors here, so that is comforting.

C

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