Can you get a biopsy for sfn in your arm?

[waif]

I'm too tired to type up my entire medical history but my entire hand and portions of my arms have been numb for 10 years now...like 24/7

I'm scrambling to get a biopsy before I lose my insurance. But now that I'm Googling it I just see they talk about taking a sample from leg/calf etc. I don't care if it hurts to biopsy my arm. My pain tolerance is ridiculous at this point

Does anyone know if it's possible to get your upper body/arm biopsied? I'm in Atlanta

Thanks all!

 

[Zebra]

Yes! Proximal and distal arm can be biopsied.

My neurologist used a Therapath Kit, and here's a link to biopsy instructions, which include acceptable biopsy sites.

https://www.therapath.com/services/small-fiber-neuropathy-testing/small-fiber-procedure/

 

[waif]

Omg phew. I was googling on my phone and all I saw were freaking feet. I'm going to show this to him... possibly try a different rheum. Or maybe a neurologist.

Thanks so much

 

[ryan31337]

There'll be zero pain with appropriate local anesthesia. When I had mine done there wasn't really any discomfort from the wound afterwards either.

They will be comparing your nerve fiber density to established norms for that part of the body, in others your age. The Therapath link @Zebra posted above suggests Therapath have normal data for other sites and can say confidently what is normal/abnormal. You might find a different clinic using a different pathology service does not have that capability and will insist on the leg.

With all that said, I understand small fiber neuropathies are usually quite widespread and it is not that important that you take a sample from the main affected region, usually abnormality will show all over the body.

 

[ryan31337]

Oh and I noticed from your sig you have hEDS. Make it known this may cause resistance to lidocaine, if you're like me you may need twice as much and a much longer waiting period for it to work.

 

[waif]

Blah, well it turns out I already asked my rheumatologist who I like for a biopsy. Years ago. I forgot. He just referred me to a neurologist. unfortunately I'm only going to have health insurance for like a couple months so I scrambled to get an appointment with a new probably crappy neuro. I need to research this because apparently they send the biopsy to Emory. I wonder if I can persuade the neurologist to send it to therapath.

@ryan31337 you're saying it would show up in my legs. They check multiple areas..... so to compare my own leg/hopefully arm to itself and then also to other people my age?

My hands are literally numb 24/7 and my feet don't really have issues. I get a little itching and needles randomly but compared to anything in my upper body it's sooooo mild. Id never avoid walking whereas with my hands and arms I avoid everything.

I have stretch injuries to my brachial plexus which I read could cause sensory neuropathy. That's part of why I'm so dead-set on my arms. I have an article I'll post....

So if the injuries exacerbated the sfn in my hands I wonder if that would show up on a biopsy? As a greater degree of sfn? I assume they test like upper arm/leg in addition to lower because the further out the worse the sfn. I guess my biggest fear is they test my legs and it shows up as very mild.

I'm a redhead too which makes anesthesia weird lol. I have lidocaine patches and I remember them working but I left them slapped on.

(I have IR but I'm not getting into it with them. I'm too skinny and nobody will believe me)

 

[ryan31337]

@ryan31337 you're saying it would show up in my legs. They check multiple areas..... so to compare my own leg/hopefully arm to itself and then also to other people my age?

So if the injuries exacerbated the sfn in my hands I wonder if that would show up on a biopsy? As a greater degree of sfn? I assume they test like upper arm/leg in addition to lower because the further out the worse the sfn. I guess my biggest fear is they test my legs and it shows up as very mild.

The SFN literature suggests checking multiple areas, especially if you have a patchy presentation. Your arm to normal arm, your leg to normal leg etc. What happens in practice depends entirely on the clinic. I went to one of only 5 specialist SFN centers in the UK and all they wanted to do was a leg biopsy and told me if you have SFN you'll see reduced density all over the body. That sounds a bit simplistic to me though and their approach might be this way because they send equivocal cases on for a separate Microneurography investigation, which is supposedly more sensitive than biopsy, especially for autonomic SFN.

I'm afraid I don't know how SFN and traditional large fiber neuropathy might overlap. I would guess you'd need to treat them as two separate issues, with a traditional nerve conduction test and imaging alongside the SFN investigation? It sounds like you have all the necessary indications to do the lot.

Ryan

 

[waif]

Thank you. It sounds like, even tho it's a bit oversimplified... it's definitely better to get a leg biopsy than nothing at all. I'm not going to a SFN center (in the us). I could look around but my health insurance won't last long. So I'll mention my arm but try not to stress if they only do my leg

Also, it's both my hands. They both went numb at the same time.

I've had multiple emg, ncv, MRI of neck, brachial plexus, even upright MRI, physical therapy etc to cover large fiber issues. I agree I need to go the small fiber route. I'll keep you all posted. The symptoms resonate with me. I have full "strength" in my arms but they're heavy and numb, itching burning stiff. I get all of that. My pt thought I had RSD but I don't relate to excessive sweating or any of the pics I saw.

 

[waif]

Gah sorry quick question


http://neurology.emory.edu/research/laboratories/neuromuscular/index.html

Muscle biopsy....this doesn't sound like they test for small fiber?

Also I did a reverse search for doctors who have ordered therapath. So I have one appointment with doctor who uses Emory and then the doctor who's ordered therapath. Might just cancel the Emory one. I only have so much energy

 

[ryan31337]

Hard to say what a particular clinic will have expertise with.

I can say that when I saw a myologist (muscle disease specialising neurologist), she organised a muscle biopsy but had to send me to colleagues for traditional large fiber nerve studies and SFEMG. She also had no interest investigating SFN because she thought it didn't lead anywhere in terms of treatment.

You've got to see the super specialists with active research interest in a specific area to really get anywhere with these poorly understood & emerging conditions.

 

[waif]

I don't agree with the myologist... like even if there's no treatment I still want to know so I can rule out other things.

Great point, need a super specialist who's intellectually curious.

 

[waif]

Thanks to you guys I'm getting my arms biopsied this Tuesday. I'm ecstatic. I will be happy regardless of the results, if I have it that will give me a peace of mind and if I don't have it then that will give me peace of mind.

 

[waif]

sitll waiting for my results, i'm nervous it's taken over a month and i lose my health insurance soon

 

[pattismith]

sitll waiting for my results, i'm nervous it's taken over a month and i lose my health insurance soon

I didn't know it was so long. I would be happy to be tested too!
My C3 is in the normal ranges but close to the minimum normal. How is yours?

 

[waif]

I don't have the labs handy but one time they tested completely out of the bottom of the range both c3 and c4. The other two times it was in range but at the very bottom. Both c3 and c4, not just one. I haven't tested them in over a year though.

The nurse read the results on the phone and said my biopsy was normal! I requested a copy and I'll scan it and let you guys see. I'm curious what the report actually says. It's with therapath.

So now I'm back to the drawing board. It's possible my low c3 and c4 aren't related to my hands being numb 24/7 and that's from h-eds. My shoulders are extremely droopy/thoracic outlet syndrome but it's *not* a compression issue...it's stretching.

My entire body gets itchy and tingly tho so idk how much I can blame on hypermobility.

The only other test I could ask for is MS (spinal tap idk) and too worn out to pursue that rn plus im losing Obamacare

Another quirky thing about me is I'm thin with insulin resistance. And I've had it for over a decade