Head/Eye Pain, Leg Pain, Etc - 2 Years and no diagnoses
I’m writing this on behalf on my fiance. For the past 2 years, he has been going through medical issues. Different things, one after another. He was a perfectly healthy 27 year old, and then out of no where, all this stuff hit him at once. He has seen so many doctors, that I’ve lost count. He’s been on medical leave for almost 2 years now (with a short break in between where we thought he was okay, but then something ELSE popped up)… As his partner, it really scares me that no one can diagnose what he’s going through and we really want some resolve…
I’ll start from the beginning, but I’ll try not to make this too long.
It started off with him having bowel issues. He would go to the bathroom 9-10 times a day. Sometimes he would be in the bathroom for half an hour. We thought maybe it was IBS. Maybe Crohns Disease. Eventually, they did a colonoscopy and an endoscopy and they found inflammation in his intestines. Gave him meds, and now the inflammation is gone and we don’t worry about that anymore. However – during this time of his bowel issues – he also started getting chest pain, and side/flank pain. After his bowel issues resolved, his side pain is gone, but he still gets random chest pain. No one can figure out why. They did x-rays and EKG’s on his heart. It’s all good. I looked some stuff up and thought maybe it was pleurisy? Doctors said, very vaguely, he has inflammation in his muscles. One doctor chalked it up to asthma. Another said it was anxiety (which he doesn’t have). The only thing that seems to help temporarily is going to a chiropractic neurologist who helps him stretch his chest out. That, plus applying heat to the area. However, it doesn’t resolve the issue permanently, and STILL no one can tell us WHAT exactly it is and what is causing the pain. It comes and goes in waves.
Fast forward to this past July – he got an ear infection. Didn’t worry about it too much. However, he was complaining of INSANE ear pain. We put garlic oil and a couple homemade remedies in his ear to try to help still thinking the pain was from an ear ache. Eventually after a week or so, we took him to the doctor for the second time and they told us that the ear infection was gone. Ok – so what is causing the pain? They said perhaps its a damaged nerve. So they referred him to a neurologist. First one told him “it was all in his head”… Needless to say, we were NOT happy hearing that. So he started seeing a different neurologist. This new neurologist says MAYBE it’s “migraines”. From what he’s telling me, what he’s feeling is like lightning shocks of pain in his face. They come on unexpectedly out of the blue, then it subsides. Aside from that, sometimes the left side of his face just hurts and he says it feels like his left eye is bigger or feelings like it’s “coming out”, due to the pain only on one side of his face. He’s got blood work done, xrays, a brain scan….. Nothing. We thought MAYBE it was an autoimmune disease? So he tested for a bunch. All came back negative. Cancer came back negative. While all of these tests coming back negative is a great relief because it tells us what he doesn’t have — it also causes a lot of grief because NOTHING is telling us what he DOES have.
And as if that isn’t enough – he recently started getting random leg pain. Every day. His legs will be so sore to the point where he doesn’t want to move. He CAN move, but he doesn’t want to. All were hearing is a lot of guesses, but NO DIAGNOSES. Neurologist says “maybe its a migraine that’s so bad that its affecting his legs”….. But, I just don’t think this is a migraine.
So to sum up: He’s suffering from random chest pains that come and go, face paint on one side of his face, and extreme leg soreness.
We’re at the end of our rope here. I found Mayo Clinic and I know they deal with rare conditions. I’ve read articles where people who haven’t been able to get diagnoses for years, and then they go to Mayo Clinic and get a diagnoses within a week of being there. We’re so fed up with the doctors where we live and having no answers. Is it worth the trip to come out to the Mayo Clinic??