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-   -   Questions to Ask at First Appointment (https://www.neurotalk.org/peripheral-neuropathy/239277-questions-appointment.html)

catra121 08-26-2016 02:40 PM

Quote:

Originally Posted by glenntaj (Post 1221727)
--for a skin biopsy to test for small-fiber neuropathy to be done only on the upper extremity, as the majority of small-fiber neuropathy cases are length-dependent--that is, the longer nerve fibers in the legs and feet are affected first. Usually, samples are taken from just above the ankle and the mid-thigh, and also sometimes from the back of the elbow and the gradients compared. If there is also NOT a length-dependent gradient, that also has implications for diagnosis. But the comparisons should be done, as it is possible to have "local", non-systemic nerve damage/axon loss, often from injury, and that would likely show on a skin biopsy as damage to one area but not another. For instance, axon loss in the upper arm, but not in the thigh or calf, would be consistent with nerve injury to the brachial plexus or the cervical spine roots, and in the latter case most likely caused by either acute disc injury or more chronic neural formainal narrowing due to disc herniation/osteophytic bone spur overgrowth.

And, there's also the RSD history to complicate matters.

It would be wonderful if you could post the language used in the imaging reports--we do have people here well versed in that who could provide perspective.

Thank you so much for this information! I really know very little about small fiber neuropathy and unfortunately I suffer from problems with my concentration as a result of the RSD...making it very hard now to read through some of the information I CAN find. I will definitely be asking about this at my appointment. I did have trauma to my neck and back as the result of my fall...one metal bar I landed on was right behind my neck and the other just behind the shoulders. I don't have a copy of the reports...but I will see if I can get them so that I can share that information with everyone.

catra121 08-26-2016 02:43 PM

Quote:

Originally Posted by mrsD (Post 1221747)
Hi Catra...

I've been searching the connection between CRPS and SFN, and there seems to be one:

Skin biopsy in complex regional pain syndrome: case series and literature review. - PubMed - NCBI

and
Complex regional pain syndrome - Diagnostic workup

So I guess a question to your new neuro would be if your biopsy is a separate issue or connected to your RSD/CRPS.

Thank you for the links! Helpful as always. :)

Just one more way that RSD complicates my life...trying to sort all of this stuff out. Is it caused by the RSD? Is it caused by the trauma? Is it caused by the trauma worsening the RSD? Will there ever ACTUALLY be an answer to these things or will it all just be speculation? Nothing to do but keep moving forward and gather as much information as possible.

Thanks again!

dogwalker 08-27-2016 01:34 PM

Quote:

Originally Posted by catra121 (Post 1221523)

Thanks for reading and any insight or suggestions would be greatly appreciated.

My response is in regards to meds (which I realize you want to get off of). However, I've used amitriptyline for both CRPS and SFN and wonder if you've tried it at any point? I had SFN in my feet for a year starting in 2005; then the following year developed CRPS resulting from thumb surgery. (Fortunately I recovered from that in 9 months with lots of hand therapy). For the CRPS I took 75 mg. amitriptyline divided through the day, and for the SFN which has returned, I take a single dose of 60 mg. before bed time. The only significant side effect has been dry mouth. It definitely helped with the CRPS pain. I don't think it helps with my SFN pain, but my pain is mainly at night and the amitriptyline does help me get to sleep and stay asleep. This and medical marijuana have allowed me to avoid having to try any other meds which I fear would have worse side effects. Good luck with finding answers and relief.

catra121 08-27-2016 03:50 PM

Quote:

Originally Posted by dogwalker (Post 1221882)
My response is in regards to meds (which I realize you want to get off of). However, I've used amitriptyline for both CRPS and SFN and wonder if you've tried it at any point? I had SFN in my feet for a year starting in 2005; then the following year developed CRPS resulting from thumb surgery. (Fortunately I recovered from that in 9 months with lots of hand therapy). For the CRPS I took 75 mg. amitriptyline divided through the day, and for the SFN which has returned, I take a single dose of 60 mg. before bed time. The only significant side effect has been dry mouth. It definitely helped with the CRPS pain. I don't think it helps with my SFN pain, but my pain is mainly at night and the amitriptyline does help me get to sleep and stay asleep. This and medical marijuana have allowed me to avoid having to try any other meds which I fear would have worse side effects. Good luck with finding answers and relief.

Thank you so much for your reply! I did take Amitriptyline for about 6-7 months at one point for my CRPS when I wasn't sleeping at all (like no more than 15 minutes at a stretch because the pain was so bad) and it helped me sleep and I was consistently getting 3 consecutive hours with that. It unfortunately did not do much to help with my pain levels...but I know for a fact that when I am better rested that I can cope with the pain much better. I was able to get off of that after doing tDCS treatments which helped me get 6-8 hours of sleep a night without meds. Now with this new stuff after my fall that all went to heck...but they have me on Tizanidine which is helping me get 4-6 hours of sleep a night and I am grateful for that.

Thanks again for your reply and your insight into this issue!


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