Lipoatrophy/fat loss
 

I am writing alot about my atrophy issue so please bear with me. The overwhelming suggestion from the consultants I have seen is that it's unlikely my muscles are atrophying. En block, we have discussed this alot and I feel in my heart this must be happening based on what I see and feel. I'm in a major quandary as I'm being steered against it and more recently the Neuromuscular guy said there is all possibility it won't change anything as it may not be treatable. I feel I could still be in the wilderness so to speak even if it shows denervation (which is what I suspect). I am extremely worried about the pain of the of it. I'm hyper revved up to pain as it's a constant and I understand that the muscles can't be numbed, only the skin. He suggested a one inch incision which is better than some cases I've read about.
My neurologist mentioned Lipoatrophy, ie fat loss under the skin as a possible explanation. But it appears you cannot directly test this. I've read what I can about it. It can appear the same visually as atrophy from muscles. Can all these problems cause this. Does anyone else have fat loss to the extent it has changed the actual structure of parts of your body? I'm talking more than just appearing slimmer.

I'm going to stop going on about this eventually everyone. It's one of the most devastating aspects of this whole thing on a psychological level.

I noticed 3 years ago at 38 that my muscles that were hard firm and shapely began to lose tone despite my intense work out routine. That was when I started experiencing raynauds and autonomic symptoms. Now its been 2 years since I've been able to much besides a senior citizen routine, but I still do what I can. I can tell you that my shape and muscles have changed due to the neuropathy and blood circulation problems every where. I don't know how old you are but I do know that women after the child bearing years can naturally lose their shape and fat distribution on the bottom so there is a hormonal component here too. Have you been to an endocrinologist?

Thanks Health girl. I'm 37. I had my son 4 years ago and all hell broke lose not long thereafter. I originally put it down to changes following childbirth but my body went right back to normal. Then I got sick as anything, and I Sfn kicked in and then these changes became evident and have just continued to progress. I haven't seen an endo. I've had my thyroid tested numerous times. It really is bizarre to see the structural change. I also can't sit on my bum without a pillow or cushion. This has progressed significantly.
Im losing fat padding or muscle in select places where the Sfn is particularly bad, like my bum cheeks. I don't know if I will ever get answers if a biopsy comes back clear. If your issues aren't directly the muscles then I'd guess like me the autoimmune process is doing something to tissues padding parts of the body.
I also live like an old age pensioner these days

I am reading and finding some information on tethered cord syndrome that can present in adulthood. Pretty interesting and looks like it could relate to some of us. Also, it can cause atrophy in the butt and legs. You've probably discovered this, but its new to me, so I figured I'd mention it as I continue my research.

Tethered Cord Syndrome - NORD (National Organization for Rare Disorders)

says EMG only detects it when it is at the advanced stages.

Thanks Health girl. I had actually not come across this before. The link was helpful. I need to read a bit more on diagnosis. Am sure it's another hard one to diagnose. It mentioned MRI scans. I'd imagine they'd have to be quite specialised. I have MRIs on lower spine to monitor the A.S. My old rheum said I couldn't have ganglionopathy because the MRI of my lower spine didn't show it. It was only later that I realised he was talking nonsense and the type of MRI needed to show ganglion damage is so specialised they don't even do them here.