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-   -   Skin biopsy questions (https://www.neurotalk.org/peripheral-neuropathy/241239-skin-biopsy-questions.html)

Starburst 10-22-2016 05:20 AM
Skin biopsy questions
 
Do I really need this and will it change the outcome of my treatment? I was told that I would need a skin biopsy to see if I have neuropathy affecting the small nerves. I had reservations but now I've read what the biopsy entails, I'm even more horrified.

Local anaesthetic does not work for me at all and as a result, I've had some very traumatic procedures. Earlier this week, I saw a specialist in autonomic neuropathy who asked about local anaesthetic and said it's very common alongside my Hypermobility Syndrome diagnosis to experience what I describe.

I don't want to be awkward but neither do I want to cause myself distress and trauma. I have a history of....unpleasant things happening to me. I tolerate most things but I draw the line at having a procedure where the anaesthesia is not effective.

Just after some advice please. Thank you.

Summerfun 10-22-2016 07:36 AM
Quote:
Originally Posted by Starburst (Post 1226993)
Do I really need this and will it change the outcome of my treatment? I was told that I would need a skin biopsy to see if I have neuropathy affecting the small nerves. I had reservations but now I've read what the biopsy entails, I'm even more horrified.

Local anaesthetic does not work for me at all and as a result, I've had some very traumatic procedures. Earlier this week, I saw a specialist in autonomic neuropathy who asked about local anaesthetic and said it's very common alongside my Hypermobility Syndrome diagnosis to experience what I describe.

I don't want to be awkward but neither do I want to cause myself distress and trauma. I have a history of....unpleasant things happening to me. I tolerate most things but I draw the line at having a procedure where the anaesthesia is not effective.


Just after some advice please. Thank you.
Hi, I can tell you that when I asked my neurologist for a skin biopsy he agreed to do it but said it would not effect the treatment regardless of the outcome and thus far it hasn't. It did give me confidence however that the diagnosis was correct. My skin biopsy showed me at <1 percentile of nerve fibers for my age group and my diagnosis small fiber neuropathy/ganglionopathy. Taking 2700 mg gabapentin daily. Hope this helps in some small way.

en bloc 10-22-2016 10:15 PM
If your doctor will treat your SFN based upon 'clinical' findings, then there is really no sense in having it done. But most doctors don't do this and/or insurance won't cover the treatment unless you have proof of SFN (and skin biopsy is the ONLY proof). So, YES, it can and will change the way your condition is treated.

Not to mention, that the skin biopsy is an excellent way to gauge progression as it can be repeated down the road to see if your treatment is working.

But if you cannot tolerate the procedure, then this needs to be a consideration and other means of performing the test explored.

Starburst 10-23-2016 02:16 PM
Thank you for the replies. My doctor wants to establish if my autonomic dysfunction is caused by Hypermobility Syndrome or whether it's autoimmune related (I have rheumatoid arthritis). I suppose I do need this done but I need a detailed discussion when I see the neurologist.

stillHoping 10-23-2016 03:55 PM
Quote:
Originally Posted by Starburst (Post 1227103)
Thank you for the replies. My doctor wants to establish if my autonomic dysfunction is caused by Hypermobility Syndrome or whether it's autoimmune related (I have rheumatoid arthritis). I suppose I do need this done but I need a detailed discussion when I see the neurologist.
I'm not sure the skin biopsy will answer this question, the results can confirm small fibers damage, but usually it doesn't explains the cause of it.

Since you have RA maybe he need a positive biopsy to justify expensive treatments such as IVIG or Rituximab.

en bloc 10-23-2016 11:28 PM
Stillhoping is correct...the biopsy will NOT tell you whether the small fiber damage is caused by any particular condition. It only tells you whether the small fibers are (or are not) damaged.

Healthgirl 10-24-2016 08:26 AM
I can tell you that once I had the diagnosis that my nerves are in fact damage, my condition is taken much more seriously as far as getting pain meds and seeing specialists to run tests to help me find a cause.
If you already have a diagnosis of RA, you have autoimmune activity going on, so the biopsy and small fiber nerve damage might get you IVIG.
I would say that if you have extreme pain levels, that the diagnosis would be useful for getting an arsenal of pain meds and muscle relaxers for flares to keep you out of the ER. If you already have all this covered, then I don't see a point in the biopsy.
I had one from my ankle and one from my thigh. It is over very quickly and nothing compared to an EMG or a sjogrens lip biopsy.

Starburst 10-26-2016 03:26 PM
Thank you for all your replies. I'm still feeling really mixed up. I've also been referred for urology tests and intenstinal mannometry which are quite invasive and lacking in dignity. The combination of all this is just messing with my head. :(:o I'm still awaiting the treatment plan from the autonomic specialist, so I'll see what he suggstes before making any decisions based on emotions.

tj71 11-17-2016 07:14 PM
I am in the same boat and decided to not do it, as I have all the symptoms of SFN and there is no benefit to taking an eraser head chunk of skin out of my ankle!!!

JoannaP79 11-18-2016 07:27 AM
Quote:
Originally Posted by Starburst (Post 1226993)
Do I really need this and will it change the outcome of my treatment? I was told that I would need a skin biopsy to see if I have neuropathy affecting the small nerves. I had reservations but now I've read what the biopsy entails, I'm even more horrified.

Local anaesthetic does not work for me at all and as a result, I've had some very traumatic procedures. Earlier this week, I saw a specialist in autonomic neuropathy who asked about local anaesthetic and said it's very common alongside my Hypermobility Syndrome diagnosis to experience what I describe.

I don't want to be awkward but neither do I want to cause myself distress and trauma. I have a history of....unpleasant things happening to me. I tolerate most things but I draw the line at having a procedure where the anaesthesia is not effective.

Just after some advice please. Thank you.
HI Starburst,

I found the skin biopsy quite uncomfortable, it was the local anaesthetic injection mainly.
Having that diagnosis has been helpful in accessing a trial of treatment. Also, it has supported my health insurance claim. More importantly it affirmed in writing with no room for error what is going on. I feel like I am often doubted, I've had anxiety thrown at me as a cause of the pain I described and a recent suggestion of psychosomatic with regards to other issues I now mention. For me it was essential I had this proof.
If you have a clear diagnosis without the biopsy then that is great.


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