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-   -   Repeat Skin Biopsy (https://www.neurotalk.org/peripheral-neuropathy/235295-repeat-skin-biopsy.html)

Summerfun 04-28-2016 05:31 AM

Repeat Skin Biopsy
 
Does anyone know how long you should wait in between skin biopsies to see if there is any change? My results at both ankle and thigh were zero 4 months ago. Thanks!

boiler1993 04-28-2016 10:33 AM

Summerfun - I am no expert here but I think usually people wait a little longer for repeat testing. I am also curious about this actually. I got my first biopsy 3.5 years ago and since have seen slowly worsening in symptoms...thinking it is time to see if a biopsy proves what I am feeling....

stillHoping 04-28-2016 01:17 PM

Quote:

Originally Posted by Summerfun (Post 1209516)
Does anyone know how long you should wait in between skin biopsies to see if there is any change? My results at both ankle and thigh were zero 4 months ago. Thanks!

Why do you want to repeat it ?
Have you got any treatment that suppose to regenerate the nerves ?

en bloc 04-28-2016 03:17 PM

As Stillhoping asked...why do you want to repeat it? In most cases, the biopsy is repeated AFTER the use of a treatment that has hopes of increasing density or repairing nerves...like IVIG.

Even if you did have a treatment that may change your biopsy results, you should wait at least 6-9 months...sometimes longer...all depending on the what treatment you have been using.

Can you give us a little more information, so we can better answer your question??

Summerfun 04-28-2016 07:33 PM

Thanks everyone. No I am not receiving treatment. On Gabapentin. While still working with idiopathic diagnosis it is leaning toward a post infectious cause either directly related to the pathogen or molecular mimicry. From reading these posts it seems there might be hope for slow recovery in these cases. I was just wondering how long it would be until improvement started to show IF it were going to improve. Just thought (hoping) a skin biopsy might show slight improvement. Neuropathy started August, 2014. No change in pain level since it started.

en bloc 04-28-2016 09:10 PM

I honestly don't think you'll see a huge difference in just 4 months. Nerves take a very long time to heal...it's a SLOW process.

stillHoping 04-29-2016 02:15 AM

Quote:

Originally Posted by en bloc (Post 1209607)
I honestly don't think you'll see a huge difference in just 4 months. Nerves take a very long time to heal...it's a SLOW process.

When there is an improvement due to treatment, how long does it take to feel it and to see a difference in the biopsy ?

glenntaj 04-29-2016 05:58 AM

I would suspect--
 
--that if one is getting improvement (slow nerve regeneration), one might have trouble distinguishing initially, as often the process of small fiber nerve growth cones fighting past and through other tissue can produce parastheses and other weird sensations that might well make one think that one is actually having a flare or getting worse.

In long term retrospect, though, if one is getting regeneration these sensations usually calm as the brain gets used to interpreting signals coming from the new connections. But that may take months or longer.

I would think, given the really slow rate of nerve regeneration even under the best of conditions, one shouldn't rely on seeing different skin biopsy results month to month. Annual repetition seems a good interval (unless one is convinced one is having an acute process that is getting rapidly WORSE).

Summerfun 04-29-2016 07:17 AM

Thank you
 
Makes sense. Very helpful information. When I have a flare, I will think positive and say to myself "I am getting better." :). I wish everyone a good and pain free day!

Healthgirl 04-29-2016 08:38 AM

Quote:

Originally Posted by Summerfun (Post 1209597)
Thanks everyone. No I am not receiving treatment. On Gabapentin. While still working with idiopathic diagnosis it is leaning toward a post infectious cause either directly related to the pathogen or molecular mimicry. From reading these posts it seems there might be hope for slow recovery in these cases. I was just wondering how long it would be until improvement started to show IF it were going to improve. Just thought (hoping) a skin biopsy might show slight improvement. Neuropathy started August, 2014. No change in pain level since it started.


Would you mind if I ask questions? I was diagnosed at the end of 2014 after experiencing mostly autonomic symptoms that began to turn into nerve pain, numbness, tingling, etc. I wound up so bad I could barely function for 6 months. I have recovered somewhat.
Do you remember having the virus?
How did your neuropathy start- what symptoms, how did it progress?
What are your symptoms now?

Summerfun 04-29-2016 08:48 AM

Mine started......
 
with pins and needles in my fingers, then toes that lasted about 6 weeks and stopped. Then 3 months later my body exploded with weird sensations everywhere. Face, tongue, thighs, truck, arms, etc. very scary! The whole thing started the afternoon on the day after receiving the Hep A shot in preparation for travel. I did not have a virus. I later tested positive for Lyme (not per CDC but per Igenex). So I suspect it was either vaccinations as I also received the Shingles vaccine and the flu shot all within 9 months OR Lyme but I will probably never know. I do not as of yet have autonomic issues at least that I know of. I hope that helps. Feel free to ask additional questions. Hang in there!

Summerfun 04-29-2016 09:14 AM

Clarification.....
 
Quote:

Originally Posted by Healthgirl (Post 1209656)
Would you mind if I ask questions? I was diagnosed at the end of 2014 after experiencing mostly autonomic symptoms that began to turn into nerve pain, numbness, tingling, etc. I wound up so bad I could barely function for 6 months. I have recovered somewhat.
Do you remember having the virus?
How did your neuropathy start- what symptoms, how did it progress?
What are your symptoms now?

I did not have a virus but I did test positive for Lyme. I know I was bitten by a tick in Nov 2011 but my primary care physician did not treat it. That was a long time before SFN symptoms in March 2014 but I read it can be latent until a trigger sets it off. My symptoms are tingling, burning (especially thighs), deep ache in big toes, ear flutter, razor like cuts along side of calf, lots of weird things. My symptoms have remained the same but I OD'd on B6 from my LLMD so maybe I would have improved if not for that. I take 2700mg gabapentin daily and keeps the pain around 3 PN a 1-10 scale. Hoping for improvement someday! Best to you!

Healthgirl 04-29-2016 09:46 AM

Quote:

Originally Posted by Summerfun (Post 1209664)
I did not have a virus but I did test positive for Lyme. I know I was bitten by a tick in Nov 2011 but my primary care physician did not treat it. That was a long time before SFN symptoms in March 2014 but I read it can be latent until a trigger sets it off. My symptoms are tingling, burning (especially thighs), deep ache in big toes, ear flutter, razor like cuts along side of calf, lots of weird things. My symptoms have remained the same but I OD'd on B6 from my LLMD so maybe I would have improved if not for that. I take 2700mg gabapentin daily and keeps the pain around 3 PN a 1-10 scale. Hoping for improvement someday! Best to you!

I took my multivitamin randomly and still wound up with elevated B6 as well and wonder if that contributed as well.
Seems like you also have many clues and possible causes.
Are you able to exercise? I miss that the most. Because of the autonomic stuff, it is not possible for me.

Summerfun 04-29-2016 01:10 PM

Quote:

Originally Posted by Healthgirl (Post 1209665)
I took my multivitamin randomly and still wound up with elevated B6 as well and wonder if that contributed as well.
Seems like you also have many clues and possible causes.
Are you able to exercise? I miss that the most. Because of the autonomic stuff, it is not possible for me.

Yes I can exercise and I do as much as possible every day. I am scared that one day I won't be able to so I try to enjoy it now. My heart goes out to you because I know how devastated I would be not being able to exercise. I guess the most important thing is to try and find something you like to do whether it is reading, sewing, listening to music whatever. Change is always difficult and we must continue to live life in the happiest way we can. Hang in there....there is light at the end of the tunnel!:)


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