Yes! Blotchy skin for years!

April 3, 2011 at 4:30 pm

Hi John,
I too have had blotchy skin! It is mostly on my legs and feet, but sometimes goes to my hands and arms. I have CIDP, which affects the peripheral nerves so, my peripheral body parts are what is affected. What I get is purplish, yellow, uneven skin color. I am extremely white, since my new found respect of the sun and fear of skin cancer, so my legs rarely see the sun. This makes it very easy to notice the blotchiness and uneven skin tone. It is usually followed by temperature change in just that area of the body. I live in Miami wher the temperature is hot and the humidity is sticky. Every part of my body is hot, except for my legs, that once and a while look veiny, purple and yellow and get cold. I tried explaining this to my doctors a few times and they all looked at me like I was crazy. Unfortunately, I have become to acustomemed to this due to thi disease! One day, the Gods were shining down on me and as I was sitting at my doctors office, not only did I experience the blotchy skin and temperature difference, but I experienced it with alternating legs!!! 1 leg was red and burning up, and the other was freezing and purple! My doctor touched my legs and she was blown away!!! She told me she had never seen anything like that to that extreme in her years of practice! I told her that it happens all the time, just never in front of a doctor! I was so happy a medical provider was finally able to document it for me!! She told me that she thought (and she is not a neuro) but her best medical guess was that it was my sensory nerves acting up. Since I have both motor neuropathy and sensory neuropathy, the motor controls the movement and strength and the sensory controls the feeling, including temperature control. So, she thought it was a combination of the sensory neuropathy interfearing with my bodies temperature regulation along with circulation.
It still happens. It’s been a problem for about 4 years and its just getting worse. Now it is not just the legs getting blotchy, purple and cold, but I am also getting flushed, got flashes and completely red on my chest, face and ears. I am 35 years old, so it is not menopause (I hope)! The good thing is that since it is happening more often, my neuro has witnessed it, so has my phi therapist and many other providers.
Although there aren’t any answers as to what can fix it, do know that it is not in your head as I was made to feel for so long! You are also not alone in this! I can tell you that I did find some relief with IVIG.
I will say that once my neurologist saw it, years after my complaints fell on deaf ears, he did say that it was my sensory neuropathy piggy backing on a cardiac issue that he had no clue about because as he said made it clear to me, he is not a cardiologist. My heart sounds fine, I do have palpitations and arrhythmia’s and eventually will be seeing a cardiologist and/or pulmonologist to follow up on this. Right now, I am seeing all the doctors that I can emotionally and physically handle. Every doctors appointment and hospitalization is exhausting to me, so little by little, right. Like the saying goes “How do you eat an elephant? One piece at a time”. I am seeing as many doctors I can handle at this moment. Eventually, once I have eaten the trunk of this CIDP elephant, I will start in a leg (cardiologist and pulmonary). I need to keep my sanity as best I can.
Best of luck to you,