Crazy neuro pain that no one can figure out. Help!

I’m suffering from the oddest medical situation I’ve experienced, and I’m hitting a wall with doctors. So, I’m turning to others for help.

In March of 2013, I was diagnosed with Testicular Cancer. I’m a 28 y/o white male, so I fit right in the guidelines of the average TC victim. The cancerous testicle was removed and it turned out to be a localized seminoma, stage 1. In other words, if you’re gonna get TC, it’s the kind you want. It didn’t spread and it’s the least hazardous. I was also advised by my team of doctors to do one dose of Carboplatin chemotherapy (5 weeks after the surgery) for various reasons. I’m not sure if any of what I just told you has anything to do with what I’m going thru now, but in case it did, I wanted to put that out there.

In mid-November, I had one of my cancer checkups, and I got the all clear. Yay! I also saw a Neurologist because of some headaches I had been having (an MRI showed no tumors), The neurologist put me on Gabapentin (1 pill a day for the first week and working up from there), and the medication worked wonderfully - the headaches vanished. Right before Thanksgiving, I travelled out of town for work, and the day after Thanksgiving, all of a sudden, in the middle of the day, I got a burning pain on my right lower abdomen, about an inch to the right of my belly button. It was the oddest burning feeling, and then hours later, the pain appeared on my back, sort of around my kidneys. The pain on the back, instead of feeling like skin burning, felt more like really intense muscle spasms - the kind that left me double over in pain. The pain would spend a few hours back there, then loop back around to the front. A slight rash showed up, but nothing intense. It was sort of like a toaster oven - when the pain got really intense, the area on my skin where the pain was would get really pink, and then go away when the pain calmed. I lived with this until the next night when I went to the ER to see if they had any advice. When I was in the ER I wasn’t having any of the crazy pain (of course), but they did a urine test to see if was having kidney stones. The test revealed I did not. The pain crept back in the next day, where it appeared on and off. It was exhausting. I called my Neurologist thinking that I was having some averse reaction to the Gabapentin. She said said it sounded like Shingles, which that medicine actually helps cure, but just in case, to stop taking the medicine. On Dec 2, I went to a walk in clinic where the doctor said that it was shingles. He said it was odd that there was no typical shingles rash and that the redness just came and went with the pain, but he put me on Valtrex and Prednisone for about 9 days. Two hours after I took the first pill of both medicines, the pain went away. It never came back…

until…

January 3rd, 2014 I was still out of town for work. This time the pain appeared on my left side. Exact same pain and pain schedule as before. This time, it woke me up at 2:30 in the morning. I had no medicine, all I had was a refill of the Valtrex on my prescription, which I called in and walked over to the 24hr pharmacy immediately to pick up. I took the first Valtrex pill, and actually felt some relief. I stayed on the Valtrex alone, because I just didn’t want to go on the Prednisone again so soon, and while it didn’t get rid of the pain entirely, the pain did go down some. However, it started to get bad again, and by the final day of the Valtrex, the pain was back in full. A different doctor at the Walk in Clinic saw me and said he didn’t think it was shingles, but didn’t know what it was. He put me back on the prednisone, this time by itself and within an hour the pain was gone.

When I got back home in the 3rd week of January, I saw the Neurologist from before to describe what I had gone through. She literally had “no clue” and just said to come back if the pain got bad again. She said to stay off the Gabapentin for now since my head was feeling better anyway.

February 6th. I woke up in the middle of the night with the pain appearing again on the left side. This time, since I was home, I took a Vicodin pill from the stash I had left in the house from my cancer surgery. That worked and I was able to get back to sleep, but over the next few days, the Vicodin was the only way I could get through the day. A few days ago, I saw my GP, (who I had been updating about this when I was out of town), but he really had no clue what this was or could possibly be. I had an ultrasound of my kidneys which came back clear, and he feels that other than where the pain is occurring, my symptoms don’t match up with shingles. Because I didn’t treat the pain this time with Prednisone (or Valtrex), the pain has spread. What I’m experiencing now is the burning feeling on both the front and back of the lower half of my torso, along with crazy shooting pains that go down the left leg. The pain has also made it’s way over to the right side of the front of my torso, and on my back it’s creeping closer to my spine. I usually take a Vicodin before the pain gets really bad, but even when the pill is in full effect I get the pains. Clothing can even irritate the skin so badly that I have to walk around with my shirt off. It’s completely debilitating. The rash is consistent with before, but even less noticeable. Little tiny patches of pink flare up when the pain is really bad, but that’s about it. It’s not even a solid pink, it’s more of a polka-dot pink if that makes sense. The rash is not raised or textured.

My GP has put me on Gabapentin (starting with 1 pill a day for the first week, and building up from there), and he said to use the Vicodin when needed. Since starting back on the Gabapentin I’ve had a few days where I haven’t needed Vicodin at all, and some where I’ve needed it 3 times a day. I’m meeting a new Neurologist in just over a week. No one seems to have answers.

I need my life back. Any thoughts?

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