Hi all, things have become so desperate that I don't want to carry on anymore. I have a small son so I will keep on but I just cannot cope with not knowing or understanding what is happening and the rate of progression. The exceptional sfn pain is one thing, and it's severe from head to toe, face, spine, legs, feet, lips, nose, everywhere. But, what has progressed terribly and taken this to a level of terror are problems with muscle energy and being able to move parts of my body. My body is tiny having shrunken significantly despite eating a lot. Muscle mass has basically disappeared everywhere, most prominently legs, hips, thighs and upper arms. What's happened on top of the shrivelling body size is a pain and fatigue like no other deep within all my muscles to the extent that I cannot move sometimes over the last week. I can move but the mental strength I often have to muster to move my body, put one leg in front of another and raise my arms during a flare of this new progressing issue is terrifying. MRI and nerve conduction are showing nothing beyond Sfn so I'm only officially diagnosed with sfn. (Also have ankylosing spondylitis). My neuro accepts my explanation of full body symptoms but any explanation or diagnosis beyond the Sfn is limited. Sfn pain is now at a point where every part of me feels like hell. Paraesthesia in every part of my entire body without exception is possibly worse than pain and drives me to insanity. Even the nerves within my teeth and nasal passage are agonising me. I've had abnormal heart rhythms through the roof this week whilst the other symptoms have ramped up.
The neuro can't feel what I feel so won't take me beyond what we have already tried - two loads of ivig and 5 day steroid infusion. He won't try cellcept as he is worried about making me more sick. (With all this nerve and rheumatic stuff happening I am already systemically sick, feeling unwell and ill to the core of my body. I see his point. But, I feel like this is going to kill me or paralyse me from the neck down in a short space of time and I can't stop trying everything I can. I have a small son who needs me. I am his primary carer on my own and I cannot bear just sitting here becoming increasingly disabled whilst he watches.
Whatever I have is really serious and I just want to keep trying everything. Please, if anyone has any suggestions as to what the hell to pursue next I would really value your input.
The last letter from a Neuromuscular specialist said that MRI and nerve conduction are clear! So I'm kind of feeling on my own now. He suggested muscle biopsy but felt the likelihood of showing anything was small. I feel instinctively within my gut that my time is running out. Please, I am desperate for some advice as to what route to pursue next