Hello. My name is Jack. All my life, I felt that something was holding me back. I seen all my friends enjoying sports, running, wrestling, riding bikes, and horse playing like all kids do but I was different. These kinds of activities hurt me, they caused me pain. Please don’t get me wrong. I did try. I accepted what others told me, “oh you are fine, get out there and at least try” and “you are just having growing pains.” I managed. At the age of 18, I injured my pelvis. It put me flat on my back for a week before my mother forced me to go to a chiropractor. He told me I had pulled my pelvic joint out of place and with some manipulation and several follow up visits he had me back to work in a couple of weeks. Looking back now, I feel was the start of my journey that has led me to become an advocating voice for Faces of AS. I also suffered severe headaches as a child. As I grew into my teen years, these headaches progressed into “Migraines’, but were not diagnosed until 1994, at the age of 22. 1994, the year I lost my mother to “GLIOBLASTOMA” and also the year I lost the one person I had always trusted.
I was encouraged at that point by family and friends to seek medical attention due to headaches being so severe that I would vomit for hours and then be unable to function for 24-48 hours after each episode. I did get a MRI of the brain and it ruled out any abnormalities, received the “Migraine” diagnosis but also received a few more because I was a Pepsi drinker and a smoker (at that time). I also had a “chemical and physical addiction” to caffeine and nicotine. (Which kept me from receiving proper medications for migraines, I feel) So I eliminated both of these from my life with no improvements noted to the number or severity of my migraines but knew I was healthier because of these life changes. In 1998, I began to have “back issues”. I began working with my GP to get some relief. She did blood work and referred me to a Neurologist. All reported “within normal limits” and/or “no abnormalities”. So nothing changed. I continued with life to the best of my ability, the same as I had always done.
After several more years passed by with no relief from migraines and no medication for migraines, in 2003 I changed medical doctors. My new GP seem to care, she was willing to try some new medications and was truly working to try and help me deal with my medical issues. She did more blood work, x rays, CT scan and referred me back to the same Neurologist that I had seen in 1998; she also referred me to a dermatologist for some skin lesions that had appeared in the genital area, wrists/forearms, ankles/shins and mouth. I had several of the spots biopsied and was diagnosed with Lichen Planus and given a topical steroid prescription. It really seemed to be no big deal to the dermatologist so I dealt with it. She referenced that it usually runs a course of 10+/- years and then appears to go away or less in frequency/quantity of lesions. The medication worked well for the genital and other topical skin lesions/sores but the oral had not been prescribed medication. I questioned the doctor at a follow up visit and she said to use the topical inside my mouth on the open lesions and also gave Dukes Magic Mouthwash or Swish and Swallow, which ever one it was helped enough for me to live with and only have to deal with flares. I did try the topical greasy ointment in my mouth, can not say if it helped or made worse. It was pretty bad at the point to actually put that nasty stuff in an area full of taste buds with inflamed open wounds lining the inside of both cheeks. Now 10 years later the skin lesions only come few and far between but the oral lichen stays flared up in my mouth. Didn’t really see the point in continuing to see a dermatologist for this and got that feeling from them that with the medications, it was no big deal. So I don’t regularly have the mouthwash/rinses that actually help with this condition. Occasionally I am prescribed one or the other for strep like related issues which is the only blessing out of having to go to the urgent care with strep at always so unusual and inconvenient time just to find out once again I have strep throat.
My neurologist seemed to be very concerned because complaints of back/neck/shoulder pain continued but objective data was not supporting subjective data. So she referred to a neurosurgeon in 2004. I had my first MRI of the cervical spine. My neurosurgeon and one his new partners went over the MRI with me and my wife. I remember him saying something to the effect of, “slight bulge at C5-6, that it was not bad, that it would probably not give me any trouble may even heal itself, and that most people my age have the same thing”. I do remember making one last ditch effort to explain the pain that I was feeling to him and his partner. I was basically told the pain that I was reporting DID NOT match the image that we were looking at. As a man will often do at this point, I shut up, sucked it up and it was back to work and life as usual. (This was when I began to think I am on my own and no one can or was willing to help)
But my GP was caring and continued to encourage me to NOT give up. She referred me to a Rheumatologist in 12/2005. He did his workup and long story short, I was released from his care by 1/2006 because I was not showing any clinical signs of “arthritis”. I did receive a copy of the lab results from this visit. They got filed with all other important paperwork. I never looked at them in detail because I had been told that all labs were “normal”. I was happy to hear to that I had no life long disabling diagnosis because….my wife had just found out we were pregnant with our 3rd child and she would be graduating in May with a bachelors degree in nursing. (NOW, I KNEW she would AND could take care of me, if anything ever did arise)
Again, several more years passed by (very quickly may I add, our oldest child was 15, our middle was 9 and a newborn in August. Not to mention a BRAND NEW RN). Now in 2011, I have a new GP because my previous GP only treats pediatrics now. One of the PA’s in his practice referred me back to the neurosurgeon that I saw in 2004 (the new partner). In 06/2011, I was told that I have a herniated disc at C5-6 with cord compression and bilateral nerve compression that would require surgical intervention. WOW, finally the picture matches the verbal complaints of pain. 10/2011 I have a follow up visit so that we (my wife and I) could discuss all options. I was having “BACK” pain and understood the C5-6 to be one issue in itself. So I questioned my neurosurgeon, could this be what is going on in my lower back because the pain “felt” the same as in my back/shoulder/neck area. It was very clear only ONE problem at a time. This did frustrate my wife. She insisted on a second opinion. On or about 01/09/2012, I requested a copy of my medical record so I could seek a second opinion without making my current neurosurgeon upset for doubting his knowledge and ability. On 01/12/2012 my “physician/patient relationship” was terminated by my neurosurgeon because I “decided not to fulfill my obligations to them” per letter from neurosurgeon. I did contact practice administrator only to be told that I “would never be seen by anyone in this practice again.” I was so confused, scared, unsure, and disappointed. Now what do I do? Where do I go? As stated earlier, I was terminated from my Neurosurgeon in GreensboroNC on 01/12/2012 with a 30 day “emergency only” grace period so I returned to my GP for guidance as to what to do next.
After explaining the situation and reviewing the medical records from the neurosurgeon. My primary doctor gave me work restrictions which resulted in me using FMLA for 12 weeks (and ultimately loosing my job because in 12 weeks I had not got anywhere with my healthcare condition to have work restrictions changed or my Return to Work/Fit for Duty form completed) and I was referred by GMP to Orthopedic Specialist in Asheboro NC for evaluation of surgery for HNP C4-5, arthritic type symptoms, and HLA-B27+.
Appointment was made and after first visit was told surgery was a possible choice but would need to need to re-evaluated (or the original 2nd opinion that we were seeking when previous relationship was terminated) by another referral to the Orthopedic Surgeon/Spine Specialist in Greensboro NC. After several visits another MRI was obtained in 03/2012, which did show improvement to the area but was also in the flexed position more so than the original cervical MRI obtained in 05/2011 (which was more hyper extended so to say I guess. I was then referred to a physiatrist for injections or medication for “pain”. After 1 visit with him, he basically said that he could not inject all over and after evaluating cervical MRI for himself decided to refer me back to Spine Specialist for a re-evaluation for surgery due to majority of complaints were mylopathy and radiculopathy related and also increased me to the max dose of Lodine that the spine specialist prescribed for me. So back to the other side of the building as these doctors are located within the same practice. On my return visit, he basically deemed the pain to be related to my shoulder and gave me an injection of some kind in my shoulder. Let me add here-Two days later I was in the ER with a migraine that did not resolve with the treatment given and after about another 8 hours of vomiting, dry heaving, and continuing migraine my wife insisted I go back to ER, I refused to go back to the hospital that I went to the first time- the treatment and understanding was not to my standards. I had c/o chest pain so on arrival an ECG was done that showed abnormal reading with a possible digitalis effect, blood specimens were obtained but no labs were ordered by the ER doc to so I have no idea if something may have shown this particular time. So she decided to take me to a larger university hospital located about 50 min from our house but we did not make it. I was vomiting out the window as we exited off the highway there was a local area hospital which was also ran by the university hospital we were headed to so she decided to take me there. The ER doc there was very compassionate and did get me some relief as much as to be expected after having a migraine for 3 days and vomiting with dry heaves for 2 ½ days. So needless to say I am not in favor of any more injections. I am not sure the injection was related to the migraine but it was an experience that I just am not willing to chance again to try and figure out.
I was also referred to ENT by my General medical provider because I was also having issues at this time that were really affecting my ears and sinuses. I was having popping, cracking, ringing (tinnitus), water in the ear feeling, with vertigo and nausea. Twice within a 45 day span, he diagnosed me with strep and possible allergic rhinitis, prescribed steroids, antibiotics, and steroidal nasal spray twice and said I might be a possible strep carrier. He also referred me to a cardiologist in BurlingtonNC.
I did follow up with the cardiologist and he requested a follow ECG from the previous abnormal ECG from 03/18/2012 in the ER and a cardiac stress test. But again due to my financial situation at that time was unable to have these tests performed.
I also called my eye doctor and had my yearly exam. He stated that I had lost acuity and could use a prescription strength corrective lens. I explained my loss of insurance recently and my wife does not carry vision on her plan so if I did not HAVE to have them now it would be better financially for me to wait with all the other medical bills that I am incurring right now. He said that it could wait but expect it for sure by next year if not before.
I also thought that I would see a dermatologist to follow up on any current information concerning Lichen Planus and I recently had this hard nodule show on my RLQ, about 3-4mm in size, only sore/tender with manipulation, no redness, and not open. She said it was benign and nothing to worry about. She also suggested to follow up with my dentist concerning oral lichen planus and said I could call her back if any further skin lesions appeared that I though may be lichen related otherwise she would see me back as needed.
Back to my GP, where else would anyone go? I saw a NP within his practice. She listened and decided that I should have some images of the rest of my back because at this point (to my knowledge) I had only had 1 CT scan of my entire back and 1 MRI of the my cervical region. She ordered labs and x rays of the cervical, lumbar, and sacral. All tests came back “normal” except HLA-B27+. She did order a MRI of the lumbar, not exactly sure why but very thankful. It did show a bulged disc at L4-5 and L5-S1. So I know that I have even more damage to my spine and still no one to diagnose what is happening to me and no surgeon willing to surgically evaluate or surgically intervene since previous neurosurgeon terminated patient-physician relationship.
I did contact original Rheumatologist that diagnosed HLA-B27+ back in 2005, he was not accepting new patients at that time but referred me to a new Rheumy with the practice. I saw him once or twice. He did ultrasound of the wrist and fingers- no evidence of swelling…. He also told me in so many words that he would not diagnose me with a chronic life altering disease (AS) on the first visit but did note that in his documentation that some elements of my health history could be consistent with spondyloarthritis. We did briefly discuss some treatment options if this was the case, Enbrel was mentioned. I was also seeing a gastrointestinal doctor for GI issues and I did disclose this information the new Rheumy. Before I knew it my GI doctor was suggesting a colonoscopy based on “communications” between the Rheumy and him. I did not understand the reasoning of this and was very upset. It seemed to be a very costly useless test for my arthritis doctor to want me to expenditure and endure at the age of 39. Yes, I had GI issues but no evidence of bloody stool. I have bouts of diarrhea but my worst GI complaint is reflux/GERD/indigestion. So I went on to have an EGD after pretty much having it out with GI doctor, confused why this would even be a consideration on his part. He pacified me and compromised with an EGD, he said it would be a good baseline to support an ok to take the meds that I may be looking at if diagnosed with something like AS.
Results of the EGD confirmed no cancer but did show gastroenteritis continue with Nexium already prescribed preventively. We also discussed Lichen Planus of the esophagus. Although to find out after EGD and my primary insurance cancelled that my wife’s insurance company will make me change my prescription to Protonix due to price difference and this should be tried first and if this does not work then the next step may be approval for Nexium. Never mind the fact that this is something that I have lived with since adolescence, drinking milk as a child for its coat the stomach properties, then Rolaids and Tums as a teen and young adult and then the “new” OTC antacids meds on into my 30’s. I just now felt pushed to go to a professional doctor about “HEARTBURN/ACID INDIGESTION” with occasional bouts of multiple loose bowel movements which can be severe enough to cause significant weight loss at times. I also had a barium swallow that showed a hiatul hernia and best I can recall like a lazy muscle. Not tremendously bad or a big deal on either GI test. Sort of made me glad I argued my way out of that colonoscopy. UNTIL I learned or read about enteropathic arthritis. Made so much more since well by the time I read about it I had already fired my “new Rheumy” and went to yet another “new” one that was “AS” aware we’ll say. He told me I was flat footed, needed orthodics things in my shoes. He also said that I more that likely had planter fasciitis but an orthopedic would be the one to properly diagnose that and the inserts in my shoes. My feet, ankles, knees, hips, shoulders, and neck had signs of degenerative arthritis yes but nothing that should be so painful or debilitating. He did give a supporting statement that he felt most of my problems from muscle weakness/aches, fatigue, nerve/pain issues, and bladder issues were probably stemming from NHP at the C4-5. He basically said have surgery an you will probably not have half the issues and confirmed that he really felt that they were not coming from osteoarthritis or any degenerative disease that I may have had going on. Yes there may be one but it is mild not showing a tremendous amount of activity objectively via blood work results or image results. ROM and mobility are only mildly affected at this point. This is because; I have just recently gotten to the point of not being able to do my normal activities on a daily basis. I have to pace myself most every day. I have very few days when I feel I can do all that I have going through my mind. This is why I have not worked since January of this year. My wife felt I was being pushed and stressed just to make someone else’s buck. She did not see the worth in my income if it contributed to me becoming incontinent at times with a constant urinary dribble that had become quite a problem. (Which I did see an urologist for back in 2008, I believe. Diagnosed with prostatitis, placed on doxycycline for about 2 weeks, urologist said issue seemed to have resolved and dribble would continue to improve. It never really did, actually hindsight it slowly became worse creeping issues into my sex life. This ultimately led me and my wife to a point where I had to be honest how bad things had gotten with my physical body. I had to be honest or sacrifice our relationship to my body failing in ways that no man is comfortable talking about at the age of 39 (much less early 30’s when the issue really began looking back in those 20/20 vision review mirrors)
I also followed up with another orthopedic in GreensboroNC concerning what the Rheumatologist in BurlingtonNC had advised me about me having flat feet/planter fasciitis and my knee issues. His diagnosis was chrondomalacia of the knee and planter fasciitis bilateral feet.
I would like to include every detail to every doctor visit if not over the past 20 years at least the last 10 but I know that is not possible so I will stop there for now. This is a very quick overview of what I thought was my “normal life in my normal body”. The point is that I have been to numerous doctors. Most with a referral from my GP wanting something investigated further. Multiple visits to each of the following and some include an undisclosed second opinion or follow up from a lets wait and see diagnosis from previous specialist so another doctor chosen second go round with same outcome as the first usually. Neurology, Neurosurgery, Rheumatology Dermatology, Orthopedics, Physiatrist, Chiropractor, physical therapy ENT, dentist, oral surgeon and ophthalmologist. Eyes have always been ultra sensitive to bright lights and have a issue with blurred vision with redness but the eye doctor says everything is fine, I could use a prescription for eye glasses but at the present time have no vision coverage and therefore he said it could wait it is very mild and should be corrected but should not be bad enough to cause me any significant difference until I can afford to buy the script for glasses.
How are we supposed to know that something is not normal if no one talks about “it” and when you do hear “people” talk about “it”, “it” always seems to have a negative, sort of derogatory tone. This tends to make one not want to admit or verbalize any symptoms of “it”. Not to mention being a male, not saying that I am typical but not one to “enjoy” having to go to the doctor for just the yearly check up much less for a specialized interest multiple times just to be told all tests, exams, results are WNL or close enough to not be concerned with. Just saying that I may have denied some signs and symptoms along the way but I did verbalize them to the doctors over the years, they appeared to have been investigated for the most part and ultimately nothing turned up in the lab work, test, exams, or images. What else can a husband, father, son, son-in-law, employee, citizen do but go one with life like we are supposed to… That is until incontinence hit one too many times.
North Carolina United States of America