Are EMG and nerve biopsy tests necessary year after year?

I preface this by saying that this is not a medical opinion, but I would say yes to continuing the EMG's and nerve biopsies because, as I understand it, and not to scare you, the nerve damage "could" get so bad that it could lead to amputation. This is a fear of mine, which propels me to continue to find a Dr who will actually stay on top of it. Again, only my opinion, and from my negative experiences, I think you are lucky to find a Dr who wants to stay on top of it. From my experiences with Drs, if you have a condition like PN, which does not have a cure, Drs seem to lose interest quickly and aren't good about followup. Just saying.....
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It lets them know how the neuropathy is progressing. I personally hate the EMG and nerve conduction test along with the punch biopsy. To me they hurt.

I’ve had several different Neurologists over 7 years, due to relocations. including two Medical University hospital consultations. It seems at first that all felt they had to do their own EMGs (3 in my first 6 months!) as if they weren’t allowed to rely on those by others. I moved to NC and my new Neurologist there did one, and I asked him to compare to the one previously done and he said he couldn’t because the previous report results (from Medical University) was a different reporting software (or something like that) where it wasn’t easy to compare them side by side. I was a little puzzled but I doubted anything significant changed. It has now been over 2 years since I had that EMG, and I moved back to SC, and hooked up with an old Neurologist from the Medical University I had seen as a previous consult 6 years earlier and asked if she could compare the EMG she did in 2016 to the one my NC Neuro did in 2021. Her response wasn’t that she wasn’t able to (so I don’t know if that is part of it like the NC doctor said), but she actually said It Did Not Matter! She said if it showed I was getting worse, there would be nothing she’d be able to do about it, since she can’t help my PN, so there was no point in comparing them.
I’m not sure how comfortable I am with that response. Perhaps SHE sees no benefit to HER knowing because there’s nothing SHE can do about it for HER self, but I guess we need to answer for ourselves, what might WE THE PATIENT be able to do with knowing if there’s been momentum in getting worse (or better) over the time we’ve been dealing with our conditions? Would we continue exactly what we’ve been doing or would we consider new therapies to help offset or prevent continued loss, like increase Physical therapy, make our homes more accessible, improve diet/vitamins? Will we do more things now & in a hurry vs putting them off because trends may show consistent decline over years of testing that tells us we better do it now? Should we be managing our finances and home purchases differently because of what tests could obviously be telling us, IF the tests are done?
So I guess my point of view is if a doctor offers you that test, YOU have to decide if the results would be useful to you in managing your quality of life and affairs. I think I know what I would do, but we all think differently. I’m not thinking about it at the moment, because that last doctor proclaimed the results wouldn’t help HER, and apparently that’s all that matters to HER, so the choice isn’t mine. Good luck with your decision!

I'm new to this forum and I'm wondering where I've been so long. Your answers have been extremely helpful. Thank you!

@dbeshears1 Well Debbie, again you make a lot of sense on your comment, all of it. My last EMG was Feb 2020. In late 2022, I asked about one, suggesting an update and was told "what for". I thought an update would be of interest, helpful, apparently not. Doc said we know what you have and to me, looks like it hasn't progressed. OK, so now we go by looks. That was easy. I know it has progressed despite what it "looks like". We all know, we just need to think back about what we did just 2, 3, 4 years ago and compare those prior abilities to today. I'm not the same, many of us are not. So, we make the best of it, try to remain positive and keep moving. I hope to see my neuro doc in next month or so, let's see if she suggests and EMG? If so, I'll likely ask "what for"??

Ok, I just don't get it because I thought severe PN in the feet could possibly lead to amputation? I was sure I was told, or read that. So, I just looked it up and here is what I found: "People with poorly managed peripheral neuropathy are more likely to experience foot ulcers—painful sores on the feet that don't heal well—whiPch may lead to infection and amputation." So, why have Drs stopped doing annual EMG's, etc., to be sure of what is happening, not just "looks ok to me" type of attitude? I just don't get it!! MEDICINE TODAY.....Ugh!!
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@pkh3381 I see a podiatrist every 3 months paid for by insurance because of my PN. He does a complete foot exam and may as well get the nails cut, at times, while I'm there, right? I also check my own feet a few times a week. I'm not a diabetic, my wife is so we're aware of foot issues. I know some diabetics need to be careful when it comes to protecting feet and be aware of sores and blisters.

I've had neuropathy for 3 years. I had the nerve conduction early which diagnosed this. The neurologist was reluctant to do biopsies but my PCP pushed. It was helpful to know areas of involvement. I haven't asked for more. I know it's getting progressively worse but I continue to have a great life with meds. I can see why docs don't wanna give more tests AND I also get why some monitor. Tracing progress may help with validating a patient statement and then changes to treatment. In my case symptoms were occurring outside of the bodily area where testing was done - mid back burning. I may ask to be tested again but just don't feel the need. My new neurologist and I work together to create plans to alleviate pain. She's a good. Great topic to bring up!

This is a great question, and the answer applies to most other diseases that are chronic, the cause is unknown and have no "cure".
I have idiopathic small fiber PN, meaning the cause is unknown. The only treatment is for my symptoms (pain). Other types of PN can be treated more specifically (diabetes, B12 deficiency, etc.) because the cause is known. The treatment is for the underlying cause.
In my case (and others) the diagnosis is assumed from the results of the EMG/NCS, blood tests, etc., which is typically normal in small fiber PN. My neurologist wasn't enthusiastic about a biopsy, but I insisted, just because I wanted to "know for sure". It was done, and it confirmed the diagnosis. I insisted because of the reasons noted above in other posts, but in the end, I gained nothing useful from the biopsy in treating the disease.
As in the cases described in the posts above, there is no need to repeat the tests, because now that the diagnosis is known, there is nothing new to be learned from repeat tests, and thus far, there are no new treatments. As far as progression (getting worse), that is determined from your symptoms; the tests can confirm that you are getting worse, but you already know that.
I am not generally in favor of doing tests simply to "know" something for which there is no corresponding treatment. After all, there is a downside to the testing (it can be uncomfortable, expensive, time consuming and even lead to complications and false results).
Regarding amputation, that is a result of chronic wounds, usually from diabetes. Further testing for peripheral neuropathy when that is also due to diabetes will not prevent you from getting foot ulcers. Treating the underlying diabetes is the answer

I agree. Those tests, especially biopsy, are beneficial for diagnostic purposes. In some cases EMG could be useful to determine progression but there are simpler tools available. I wouldn’t repeat either test unless absolutely necessary.