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??
Interested in more discussions like this? Go to the Brain & Nervous System Support Group.
Sean, I would recommend that your partner is seen at Mayo Clinic if you can do that. These are my suggestions for them.
Has anyone evaluated for spine issues? Have you have any neck injuries in the past? Do you have an MRI that would show the neck and base of the spine? Let me tell you why I ask. I am a patient who had pain everywhere because of spinal cord compression in my neck due to a ruptured disc and bone spurs. 5 spine surgeons turned me down and told me my pain was not related to my cervical spine, but if fact it was the cause. I had "funicular" pain that was caused by bone spurs compressing my spinal cord and it causes pain somewhere else in the body. I had leg pain, numbness, arm pain, chest pain, urinary retention, irregular gait, wasting of muscle, ear pain, neck and head pain…. really everywhere and spontaneous contractions and muscles jumping. Bowel or bladder issues can be caused by cervical stenosis which is when there is not enough room left for the spinal cord to float freely in the spinal canal. I had an offer for surgical help right away at Mayo and that was 2 years ago and it was a couple days there after 3 years of looking for help elsewhere. They are very efficient. It fixed everything, and I've had a great recovery. Since you are young, doctors might not be thinking about spine problems as they are much more common with in people twice your age.
I also have thoracic outlet syndrome that causes one side of my neck to be overly tight and the neck muscles pull up into my jaw and caused uneven pressure going to that ear. A good physical therapist who works with spine surgery rehab could help evaluate and they would need to know if there was any instability in your cervical spine before they work on you. I had neck spasms that moved my cervical vertebrae out of alignment causing muscular headaches, neck pain, and vertigo. All of that was resolved by having spine surgery at Mayo, and the real diagnosis had been missed by 5 surgeons who refused to help me and I just got worse. I still have thoracic outlet syndrome and I work on that in physical therapy, but I don't have any of the pains I had before my surgery. You could see a neurologist who specializes in spine issues. I saw one at Mayo at the request of my neurosurgeon as part of his routine assessment.
What brought me to Mayo was that I was reading the research literature of the Mayo surgeon who became my surgeon, and I found a term called "funicular pain". When I looked that up, I found other medical literature about "unusual cases" that were similar to mine. When my other doctors would not bring this literature to the attention of the spine surgeon who has just dismissed me, I had to go elsewhere. There is no test for funicular pain to confirm it, but when you have surgery that fixes it by decompressing the spinal cord, that is proof that it was happening, and if they do an epidural injection that takes that pain away temporarily, that suggests the existence of funicular pain, and that was true in my case.
Here is a link to that article: http://europepmc.org/articles/PMC3111492/reload=0
My physical therapist also specializes in myofascial release work, which simply is stretching out the tight fascial connective tissue that binds everything together. It can have tightness and restrictions that affect movement and proper body functions. Getting things back in the right place and moving again helps a lot with pain relief. I've had muscle spams in my chest that cause pain, and one side of my chest muscles are too tight which affects my breathing. It doesn't help that one side of my neck and chest are tight where the nerves that control these functions pass through tight spaces between muscles, but therapy is improving that slowly. I've had some facial tingling because of the alignment of my neck and jaw that were affected by tight muscles on one side. Thoracic outlet syndrome causes one side of my body to be tight and it pulls my pelvis out of alignment occasionally and I get tightness all through my ribs to the hip bone on that side. A lot of doctors do not understand TOS, but Mayo can also treat that and can evaluate it. It is often treated just with long term physical therapy and there are different variations of TOS. Surgery for TOS can cause scar tissue and make it worse, but that is a question for a specialist. What you described about using heat and stretching out the chest suggests tight fascia. It takes a long time of working at releasing the layers of tight tissue to resolve it, so I think MFR work could help. You can see myofascialrelease.com for info on that. You can find a therapist trained in MFR on the website, or you can also call Therapy on the Rocks in Sedona, AZ and ask for someone near you who trained there as not everyone pays to be listed on their website. I can share the name of the neurologist who I saw in the Mayo spine center if that would be helpful. If you do decide to be seen at Mayo, they would ask for CD copies of your imaging.
There are also some spine alignment conditions that can affect circulation involving the vertebral arteries and jugular veins and cause eye pain and blood pressure changes inside the head. I was reading about Bow Hunter's syndrome which does this.
This talks about spine alignment causing circulation problems and thoracic outlet syndrome-
Here is some information I found by searching on MayoClinic.org which explains how the blood supply is altered when the a patient turns their head and it has to do with artery compression due to spinal misalignment of the blood supply to the brain. If your vertebrae get stuck in a turned position, it can cause problems. It talks about vertigo, vision problems and tinnitus (ringing ears). Syncope means passing out. That 's the link, and I pasted the text of the abstract below.
"A 60-year-old man presented with a 10-month history of of stereotypical spells characterized by vertigo, tinnitus, blurred vision, left hemibody numbness, and occasional syncope, precipitated by turning his head leftwards. Cerebral angiography and CT angiography of the head and neck with provocative maneuvers did not demonstrate vertebral artery narrowing. However, there was narrowing of the left internal jugular vein due to extrinsic compression from the sternocleidomastoid with leftward head rotation in the setting of hypoplasia of the right internal jugular vein. The patient underwent a cervical venogram which confirmed the finding. Manometric evaluation demonstrated a gradient of 29 mm Hg across the stenosis with the head turned leftwards compared with 1 mm Hg in the neutral position. The patient was treated with myectomies of the left sternocleidomastoid, posterior belly of the digastric, stylohyoid and omohyoid and styloid process removal. Following surgery, the patient reported complete resolution of symptoms. Repeat venography demonstrated resolution of the stenosis and pressure gradient."
I also found this Mayo radiologist (author) who might specialize in that area. He is at Mayo in Rochester, MN. I don't know him, but you could try to contact him or get a referral from your doctor to see him. He is an author on the abstract describing Bow Hunter's Syndrome and I found him as an author on a study on cranial hypertension (high blood pressure in the head).
Here are some other links that might be helpful-
I hope that helps. Let me know if I can answer more questions. I hope you find a doctor who can help.