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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? |
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"Thanks for this!" says: | indigo (05-14-2016) |
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