Has anyone had this done? Ive looked online and dont know how they determine whether its neurogenic muscle atrophy when sampling the muscle. The MRI says no atrophy, I feel like I'm losing my absolute mind because there is a significant atrophy problem. I want to pursue the biopsy. Is it worthwhile in terms of what it shows?

Yes, I had one done. It was at the same time as my sural nerve biopsy. It was soleous (spelling?) muscle and sural nerve. I have a 5 inch scar on the back of my leg. No big deal. I had mild nonspecific atrophy in the muscle but the nerve biopsy clinched the CIDP.

It was painful for about 5 days to the touch and if I bent my ankle or foot the wrong way. Im about 2 months out now and it doesn't bother me at all - I can run, jump, etc. However, I am numb on the side of my foot, but I am now used to it.

I have also had the muscle biopsy at the same time as my sural nerve biopsy (many years ago).

Mine showed denervation atrophy (where the nerve severs from the muscle). But it also showed a process in some areas of reinnervation of previously denervated fibers (which helps to resolve the atrophy in those areas). According to their comments, it is common in some disease processes to have denervation, then reinnervation, then sometimes even going back to denervation. So there can be active and/or inactive process, all depending on whether it is in the denervation or reinnervation stage.

Not sure if any of this is helpful for you. Are the doctors thinking a biopsy is the next step for you? That is odd if you have obvious atrophy, but the MRI doesn't show it. Maybe Glenntaj has some input that would be helpful in this case.

Thank you both. Apologies for the delay, I've been off neurotalk burying my head in the sand for a while.
Having recently seen a Neuromuscular specialist and having had further MRI's and emg on feet the results are 'no evidence of inflammation or degeneration of muscles'. This 'makes it unlikely that there is an underlying muscle disease accounting for her troublesome symptoms' 'occasionally even though MRI and emg are normal a muscle biopsy can show abnormalities, although this is unusual'

My muscles have changed significantly, I have no padding in my bum and it is like bone to sit on. The structure of my entire legs and bum, hips where Sfn is worst has changed entirely. It looks just like muscle atrophy. I have to pad my lower half out with padded garments. I know this is happening, it has been progressing and doesn't stop. I'm padding out more as time progresses.

Did both of you have certain results that then led to pursuit of a biopsy? We aren't looking at nerve biopsy. Just muscle. Buy the neuro is leaving it for me to decide.

I research all the time but cannot determine how easily MRI's show denervation atrophy (this I believe is what's happening). I just need to know but I know this biopsy is a big procedure.

Has this made a difference to you both I am terms of treatment? I'm diagnosed with Sfn (full body) already

I had MRI's and they didn't show any type of atrophy...yet the muscle biopsy did. I don't think MRI is capable of seeing all types of atrophy.

The muscle biopsy wasn't a big deal. yes, it is invasive, but healed quickly and had no lasting problems (unlike the the nerve biopsy and permanent sensory loss).

I had signs of muscle wasting in my legs...that is why he did the muscle biopsy. They already wanted to do the nerve biopsy due to neuropathy and numbness. It didn't dictate any particular treatment, but added information to the bigger picture...confirming the wide spread neuropathy.

Thanks enbloc. I believe that the MRI is seriously flawed as I have lost two clothes sizes worth of bulk. I know that you receive ivig. Do you feel that the atrophy has been controlled or managed via treatment in any way? I worry they would pick the least affected muscle for biopsy. I also worry I will go through it and they just have a so what attitude and send me home with no options if it is demonstrated.

My atrophy is very well controlled and almost non-existent now. I am gaining strength too. I have to say the IVIG has helped with all this since I have improved so much since starting the higher dose (for neuropathy). I am even involved in equine therapy now to further improve my core strength and balance.

Are they considering a needle biopsy or open biopsy? I had an open biopsy (actual incision). They typically chose a muscle in a problem area, but discuss your concerns with the doctor ahead of time.

Thanks En bloc. The biopsy would be an open one. I'm particularly concerned about pain (the Sfn is already so awful, I worry how this will go during and after) Also healing, with virtually no small nerves in my skin I worry what issues there will be with healing. The skin biopsy site took so long.
The fact that your MRI did not show it too makes me slightly hopeful the biopsy will show what I can so significantly see.
If you or anyone knows why an MRI or the needle in muscle test might not show any of this yet a biopsy would I'd really value your insight. I feel a need to understand this. It's not clear from all I have read.
My main fear is they will somehow find nothing and then I will have to sit back and watch this just carry on and get worse - which it has. I just need to know.