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Severe Sensorimotor Polyneuropathy, Muscle Wasting, Numbness
Neuropathy | Last Active: Sep 17 4:05pm | Replies (21)Comment receiving replies
Hello! I have severe axonal sensorimotor peripheral polyneuropathy, small fiber neuropathy, CIDP, small fiber neuropathy, dysautonomia, and cardiac autonomic neuropathy aka CAN. I have lost the use of my left leg and have drop foot. I can no longer feel my leg when I touch it. The left foot just flops down and my ankle so stiff I can hardy move it. Some days I just start crying.My ankle kills me. I have no feeling in my left leg or hands. The cardiac neuropathy causes my Bp to drop 96/44 or it jumps to 150/100 which I get really bad migraines when this happens. I get dizzy and sometimes black out. I have bradycardia (heart beats too slow) or tachycardia (heart beats too fast). I was given eight years to live by the electrophysiologist. I have two years left. I have lupus, sojourns, mixed connective tissue disease, RA and Hashimotos. They say you can’t die from neuropathy yet you can when it starts moving into your organs.
The lupus has caused seizures in me. Gotta love that one.
Replies to "Hello! I have severe axonal sensorimotor peripheral polyneuropathy, small fiber neuropathy, CIDP, small fiber neuropathy, dysautonomia,..."
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@artemis1886
Does IVIG help at all? I read that you are on IVIG. I dont really understand how it works as Ive read it can restore mobility in some and have heard that from people in support groups I attended. I had hoped that was an option for me as Im wasting from the motor neuropathy and gastroperisis (not diagnosed but not having bowel movements) Do you have any recommendations or anything other than IVIG?
I wander why its the left leg? I wear an afo brace on my left foot and Ive noticed others like you mention the left leg. Reading your post makes me hate this disease even more and solidifies that it needs ****ing more research. So what that it isnt cancer? It kills ones quality of life to nothing. Maybe not for all but I know it can and will. Someone posted on this thread that this disease is no biggie when you get used to it ……I beg to differ. I learned about CAN from your posts and find that can relate to many of them.
With that said I really do not know what to say. I want to say something of meaning and not empty. My mind is fixated on my symptoms constantly so it is hard for me to get words out other than anything disease related. I will leave it at thanks for your reply and sharing. Hoping you at least got some sleep.