Searching for a diagnosis

[bluemoves]

Hello all. Any advice would be appreciated. Here is my story. My first symptom began about six months ago with nerve pain in my right calf. It was a stabbing, shooting pain. It got to the point where I couldn't rest my leg against anything - beds, seats, etc. Later, this nerve pain moved to my left calf, and bottoms of my feet. About four months ago, the pain moved to my thighs, particularly my right thigh. It became VERY difficult to sit. About three months ago, discomfort began in my groin. At first, it was just "discomfort." It felt like the skin between my legs and butt were being pinched. Within a few weeks, this "discomfort" turned to extreme pain in my groin. I can't sit for more than a few minutes without pain. Walking hurts. I can only take small steps. Climbing stairs hurts. I try to stand to relieve the pain in my groin, but the nerve pain in my feet and legs gets worse. Laying down is the only thing that helps. I'm in little to no pain when I wake up in the morning. Lumbar MRI comes back normal. EMG of legs comes back normal. My neurologist says I just have "sensitive" nerves. He offers no advice except for taking gabapentin or lyrica. I'm a woman, age 47, 4'10, 119 pounds. The pain in my groin is only in the area around my genitals, and in the area where my butt turns into my legs. My thighs also hurt. My genitals feel fine. My anus feels fine. I have no sexual dysfunction or constipation.

My ideas -- pudendal? piriformis? I've suggested piriformis to several doctors, but they say the pain wouldn't be that bad, and it wouldn't be on both sides of my groin and leg. But if it's pudendal, then why do I also have pain down my legs and in my feet? And why did the pain start in my legs and feet? There's a peripheral nerve disease called Small Fiber Neuropathy that sounds somewhat similar to what I'm going through, but it's only diagnosed with a skin biopsy. I have the biopsy scheduled for September.

I have several doctors lined up -- 1. A pelvic pain specialist on the 24th. 2. A pain doctor on August 1st. 3. I'm waiting for the approval to see a piriformis specialist in New Jersey-- hopefully sometime in August. 4. In September, a neurologist at Johns Hopkins who specializes in peripheral nerve diseases. 5. In August, a peripheral nerve surgeon who decompressed the nerves in the tops of my feet about 15 years ago. 6. I'm traveling to Rhode Island next week to try something called Calmare treatement for nerve pain.

Any advice? Does anyone else with Pudendal also have pain in their legs and feet? Thank you!

[AAB]

Hi Bluemoves-

I'm sorry you are having all these issues. Years ago, I had similar symptoms in my legs and feet. They were numb, they hurt, and I also felt cold sensations. I did not have the groin or thigh pain at the time, but I did have a pain in the solar plexus area that seemed to radiate to the back. The neuro said to take extra strength tylenol and it could take a year to go away. He was really a lot of help .

It wasn't until 6 years later a very diligent PCP and Ortho ran test after test. They decided to do an MRI with contrast of my entire brain and spinal cord. It was then they found the answer. My point being, in my case, eventho the problem materialized below, the actual cause was much higher. Most doctors would dismiss your symptoms as lumbar b/c of the nerve distribution. I found out later that nerve tracks, that run up and down our cords can get haywire if there is an issue present.

I'm not saying you have something really bad, just that maybe a full MRI w/contrast may give the doctors more to work with.

Best of wishes and I hope you get your answers quickly.