Small fiber neuropathy and severe axonal sensorimotor polyneuropathy.
Here is my story. One my neurologist passed away. Have not been able to find a good neurologist. He was looking at IVIG therapy almost had gotten it an approval before he passed away. Now being referred to Heidelberg Germany. They have a large specialty of neurologist. I have left foot atrophy. It has affected my kidneys, gastroparesis, pancreas, bladder and not least but my heart. My pulse rate goes above 200 and my blood pressure is 160/60. I take metoprolol succinate extended release three times a day. I go between bradycardia and tachycardia. I can’t have a pacemaker due to the lack of nerves. Isn’t that sweet. My bladder unless I make myself go to the bathroom regularly I can’t tell and will urinate all over myself very embarrassing. No one has told me how this progress and how it will affect me. I am learning as I go. It seems neurologist do not want to discuss long term. By balance is off and I now have tremors in my hands, arms, and legs. My balance stinks. I now choke when I eat or drink. We are hiring an attorney to do a dnr. The electrophysiologist say I do not have much longer but that IVIG therapy could reverse some of the damage. I had iVI G therapy when I was a kid. Anyone else had it?