I will be truthful. I have had several neurologist tell me this mimics Parkinson’s and MS. This has truly been a frustrating road for me. My sed rate, CRP, C3 and ANa all inflammatory markers have been elevated. The doctors have it narrowed to RA, lupus and Sjogcrns.
My symptoms on the neuropathy dizziness, balance problems, feet feel like burning, fire sometimes and I have lost the feeling in my whole leg. My score for the severe axonal sensorimotor peripheral polyneuropathy is a 9.5 they told me the EMG/ nerve conduction test does not ever need to be repeated because 10 is the highest it goes. I have been tested for small fiber neuropathy positive. My other symptoms cardiac autonomic neuropathy confirmed by cardiologist and electrophysiologist bradycardia/tachycardia and having a hard time regulating my blood pressure it got as high as 159/99 they put me on blood pressure medication and then my blood pressure fell really low making me sick. Today 130/70. These are the other problems I have gastroparesis, kidney, bladder along with tremors. My hands shake so bad my husband has to cut up my food. Since, I can’t feel my hands I have cut them several times with a knife and have had to have stitches.
When you take all the symptoms and look at the two together it’s interesting. I do not have the antigens for Parkinson’s. Then we have the non regulation of body temperature freezing when it’s 110 in Texas. My husband says when I wake up in the morning my body is so hot it feels like he is sleeping with a radiator gee thanks. He comes to me to get warm. My hands are so hot they feel good when he puts his cold hands on top of mine.
I don’t know if you saw my previous post but I have learned neurologist have now became specialized. I was told to see a neuromuscular neurologist, They specialize in neuropathy. A regular neurologist could not answer my questions about my symptoms. I flew to Boston to see a research neurologist. Dr. Oaklander has some good lectures on YouTube. She told me I needed a neuromuscular neurologist, neuromuscular physical therapist, immunologist and a rheumatologist. That’s a lot of doctors left my head spinning but it explained why no neurologist could treat me. Anxiety also goes with neuropathy. It makes sense the first time I woke up in the middle of the night and could not feel my legs. I started hyperventilating and it took me awhile to settle down. I had a girlfriend with MS a lot of our systems are the same. She was in a car wreck and passed away.