Hi Erin, Ryon is describing the exact pain I had, lower right abdomen. I am a T10 complete paraplegic, 30 years post injury. The pain came on suddenly about 6 years ago. I had all the tests Ryon did over a period of a couple of years and the doc’s were baffled. Then my primary care doc ordered a blood panel and it showed I was anemic. I had an endoscopy—tiny camera fed down the throat into the stomach and small intestine and it showed I have celiac disease—an auto immune disease where your body attacks the small intestine if it detects gluten—a protein found in wheat, barley, and rye. A blood test confirms this.
Although it is unlikely that this is what is going on with Ryon—celiac disease has nothing to do with spinal cord injury and only 1 out of ever 133 people have it—but I just thought I’d throw my experience out there. It is easy to test for—a blood test—and rule out. Just a thought. Bob V > On Jun 2, 2015, at 3:19 PM, Erin Shackelford <erin...@me.com> wrote: > > Thank you so much everyone. > > Ryon is pretty sure that it is not neurological pain... But I'm not convinced > it isn't. He always shows the doctors where the pain is and how it feels. I > try my best to allow him to speak for himself at the doctor, but I always > clarify to the doctor that we don't know for sure if he is really feeling the > pain where he thinks he is, because his injury level is c4. > > He has been being treated for neurological pain for over a year now. First > gabapentin, then slowly increased the dose, then lyrica and then that dosage > maxed out as well. We stayed on the lyrica for over a year, but I finally > asked the doctor to take him off of it, because I was paying $75/month for > it. > > The spasticity does increase when the pain increases. The pain never worsens > or betters when eating or drinking more or less. The types of food he eats > doesn't have any effect. > > We are from a small town in the northeast corner of Kansas, called Elwood. We > are about 40 minutes north of Kansas City. We are right on the Missouri River > and receive all of our medical care in St. Joseph, MO. This has just recently > caused us problems. When Kansas Medicaid changed a couple years ago... All of > the specialist we previously saw in St. Joseph are no longer covered by our > new insurance. Medicaid is Ryons secondary, blue cross blue shield primary, > but it's easier for the doctors to accept both insurances. > > We are currently trying to form a new team of doctors at KU med, but the > problem with that is that it is an hour south of us and we don't have the > most reliable van to get there. But we will make do. > > We go back to Craig July 10th. Hopefully we can get some help this year. They > weren't helpful last year, they acted like it wasn't a big deal, but now it's > been 2 years of pain and I have got to get something figured out for him. > > Whoever asked about my parents being alive... They both are still. I think my > dad is anyway, I haven't seen her for 4 years or so. Remember... I moved out > when I was 16 and never looked back. > >> On Jun 2, 2015, at 12:28 AM, Erin Shackelford <erin...@me.com> wrote: >> >> I'm not sure if this posted the other day. I didn't know there were rules. >> My first message had images... Oops! >> >> Hello all. I subscribed to this list a while back and very much enjoy >> getting the emails and reading the responses. I figured I better introduce >> myself instead of lurking in the darkness. >> >> First off my name is Erin Shackelford, I'm 29 years old, married to my >> wonderful husband Bret, we have an 18 month old daughter named Bria. I >> myself am not a quadriplegic, but I take care of my little brother who is a >> c4-c7, incomplete quad. >> >> Our journey: We had a pretty rough life growing up. I moved out on my own >> when I was 16, was homeless at times, slept in my car at times, have been >> working my ass off since I was 16 and dropped out of college after my >> freshman year to work even more so that I could get my own place and take >> care of my brother, who was 16 at the time. Ok, so I get him through high >> school, into college, and after two years, he decided college wasn't for >> him. He signed up for the Air Force in 2011, at the age of 21 and was >> waiting for his call, to go to boot camp. He went to a party on June 14th, >> 2011 and dove into a shallow swimming pool, almost drowned and was taken by >> ambulance to a hospital and treated for intoxication and fluid in his lungs. >> He was sedated and intubated. After 12 hours, they removed the tubes and >> asked him if he wanted a drink. The nurse became frustrated when he wouldn't >> grab a cup from her. He informed her that he couldn't move his hands and >> couldn't feel his legs. He was rushed off for an MRI... He fractured c4 & c7 >> and crushed c5 & c6. His spinal cord was only bruised. After being in the >> hospital for 2 weeks, he was transferred by an air ambulance to Craig >> Specialty Hospital in Denver, Colorado. >> >> While at Craig, Ryon had two surgeries on his neck, and rehabbed from June >> to October. We are forever thankful for the treatment we received at Craig >> and still go back yearly for re-evaluations. >> >> While I was in Denver with my brother, my husband worked his butt off making >> our home accessible for my brother. Ryon came home to an accessible home and >> still lives with me to this day. I wouldn't have it any other way. >> >> I am his only caretaker and it can be quite challenging at times. I no >> longer work outside of my home and even managed to care for him throughout >> my entire 9 months of pregnancy. In September of last year, when my daughter >> was 9 months old, we discovered that she was bilaterally, profoundly deaf. >> So for the past 9 months we have been very busy with her. She received >> bilateral cochlear implants in February and is now almost 3 months post >> activation. She is progressing leaps and bounds. Ryon has luckily remained >> healthy, for the most part since my daughter was born, but we have been >> struggling with a small issue, which isn't life threatening, but >> aggravating. He's taken a backseat during the past 9 months, but things have >> finally started to slow down and we have become accustomed to our hectic >> life. >> >> Ryon has been having a stomach pain for the past 2 years and it is getting >> progressively worse. He's had X-rays, ultrasounds, ct scans, and been >> treated for neurological nerve pain. To no avail. It is in his lower right >> abdomen, definitely not bladder or kidneys, all of his blood tests come back >> normal, he's not septic, his white blood count is normal, it doesn't >> correlate with eating, or bowl programs. >> >> We are at a complete loss for what it is. When I say that he's been dealing >> with this for two years, we have seen many doctors and specialist, a >> neurosurgeon, urologist, gi... Just about anyone you can think of. Has >> anyone experienced anything like this? >> >> Thank you all for letting me be apart of this group. >> >> Erin Shackelford >
