Muscle involvement
 

Hi all,

I have SFN from head to toe and its believed to be an autoimmune ganglionopathy. Ive complained to doctors about my shrinking legs for some time and my new neuro (who is by far the best I have encountered) recently
ordered an MRI. I see him in a few weeks to discuss the results. I already know that this is happening as I can see it and it has caused more distress
than the pain if Im honest. I asked my neuro what if anything we would
discuss when the results come in and show atrophy. He said the next thing would be a muscle biopsy. I have figured that he wants to determine whether its nerve damage or damage to the muscles directly themselves. With the full body SFN, most severe in my legs, I feel certain this is nerve related and not just damage or atrophy to the muscles by other means. So I wonder if there is any point in having a biopsy. Id rather not be cut open and go through the
worry of poor wound healing and ongoing pain issues because of having some muscle removed. Particularly if they offer no hope in terms of trying to treat this.

I don't know what this means in terms of a diagnosis. I am worried about where this heads and what it means for the future. Does the atrophy just continue until there is only skin and bone. I am so worried about this, it is really hard to watch happening. Does this ultimately mean my mobility will be affected and I wont be able to walk properly? Can treatment do anything to try arrest this or do the muscles just disappear into nothing despite any efforts to treat. I have good strength in my legs at this stage.

I know I need to ask the experts but the experience and expertise of those of you on here may offer some insight?

hi Joanna. I haven't got any answers sorry but I just wanted to say I'm really sorry to hear how difficult things are for you right now. I also have muscle atrophy on my right leg and it really affects me psychologically looking at my two very different legs. So I maybe have a bit of a sense of how it's feeling for you. this has all happened more recently for me so I'm only learning as well. If I find anything that is helpful as I begin to research about atrophy I'll check in with you.

I'm glad the neurologist you have sounds good. That can make a big difference. I hope they can help you. Hang in there. All the best.

Hi Indigo,

Thank-you for your reply. I'm sorry you are also dealing with this! I relate exactly when you talk about a psychological impact. It's really distressing I know.
I hope we both get somewhere with regards to what it means. I hope it stops for both of us :-(