Jennifer McAlpin Olberg
My AS Story, By: Jennifer McAlpin Olberg
I am 41 years old. I started having severe lower back, SI joint, and sciatica nerve pain during my first pregnancy, at age 19, in 1990. I started having this pain mostly during my third trimester and mostly on my right side. I knew that most of this pain could be normal near the end of a pregnancy, but as my due date came and went I was at the point where I could barely even walk. I went to my primary care physician because of the amount of pain I was in. The doctor actually put me on Demerol pills for the rest of my pregnancy, which ended up being ten more days.
After my daughter was born, the symptoms and pain seemed to go away for a little while, (Maybe 3 months) and then one night as I was leaning over her cradle to pick her up I was brought to my knees from the lower back pain and pain that shot down my leg. I went to see my doctor, and he first had me referred to a neurologist, as he thought it was a sciatica nerve problem. All along, this had not been a constant pain and I would refer to the episodes of pain as “flare ups”. The Neurologist did their normal routine examination and testing and found nothing so I was then sent to an orthopedic doctor who did x-rays (which showed nothing) and said he had no idea what was going on and couldn’t help me. For the next year and a half I just dealt with the fact that I had these random “flare-up’s” that were causing severe pain in my low back, buttocks and pain that went down my leg. After my second pregnancy which was in 1992, Things seemed to be about the same and not getting worse so I was just dealing with it as the “flares” were happening every few months and lasting about a week. I would just take Ibuprofen at the time at that seemed to take the edge of enough for me to take care of my babies, although some days I did need help.
Finally, in or around 1995, I switched doctors because the flares were getting worse and more often and my doctor seemed clueless as to what to do next. The new primary care suggested I see a Rheumatologist. The Rheumatologist did MANY different sets of blood work, x-rays, bone scans and MRI’s, to name a few of the tests. His first thought when I was explaining everything to him was that I had AS. He said it would be hard to prove this and confirm this as a diagnosis, but that this was the route he was going to go in treating me. All of tests came back normal, even the HLA b27 came back negative the FIRST time. After many different NSAID’s that did not work, hobbling into his office with a walker at 25 years old because I could barely put any wait on my leg, and at this point the “flares” were changing sides each time I had one, He decided to re-test the HLA b27 due to the fact that I have an Uncle and a cousin with AS. This time it came back positive. I think the negative result the first time around was a mistake from the lab and he did not get the right test back for me. He got two positive HLA b27 blood test results at different times a year after the negative one.
So, now I have been seeing him for 5+ years with a positive blood test and finally showing some type of change on my lower back and SI joint on x-rays, but he still won’t give me the official diagnoses of Ankylosing Spondylitis. He was, however; going to keep treating me as though this is what I had. So let’s keep putting me on more NSAID’s and some steroids. My “flare up’s” were now happening quite often and lasting longer and longer (sometimes 2-3 weeks). Sometimes they were to the point where I couldn’t even move my legs. My husband would have to carry me to the bathroom. I couldn’t take it anymore! I could barely go from sitting to standing or standing to sitting without excruciating pain and crying. Nothing he was doing was working, my stomach was killing me from all the NSAID’s, every time I was in his office I could barely walk and was either in a wheelchair or using a walker. So after 10 years of seeing him, I left one day and never went back.
I found a new Rheumatologist in 2006 who was willing to take on my case even though, come to find out, Dr. Samuels, from Dover, New Hampshire, (the Rheumatologist I had left) had not kept hardly anything for records on me as far as tests he had done, medications I had been on, and even that he thought I had AS and was treating me for it even though he didn’t give me an official diagnosis.
The new doctor I was going to see was much further away (2 hours), but I needed a fresh start. At my first visit he did a set of x-rays and blood work and I was diagnosed with AS before I even left his office!
I felt this big weight being lifted off my shoulders. Finally I had a diagnosis and didn’t feel like I was going crazy. For so many years I felt as though Dr. Samuels would just shake his head and look at me like he just didn’t know what to do since nothing was working, and my x-rays and other tests weren’t showing “enough” change, that I was losing my mind. Not only from the pain, but because they couldn’t find anything wrong with me.
The Rheumatologist I was now seeing, Dr. Freeman, started me on Enbrel since all of the NSAID’s I had been on had done so much damage to my stomach that I had also in between this time had to have surgery. The Enbrel was like a dream come true, and accept for the daily morning stiffness and some pain (maybe a 3 on the pain scale instead of 8-10 I had been dealing with), I thought I finally found a medication that will work. Well, it worked for 8 months and all of the sudden I had a huge “flare up”. We decided to switch to Remicade. I have been on Remicade for 2 years now and it has been working well. I still have stiffness and pain in the morning, but once I get up and around I am pretty good until mid afternoon. I have had to have a port put in twice. The first one was put in after a year and a half of being on the Remicade infusions because my veins didn’t want to cooperate anymore. The second one was put in 7 months later because the first one failed, which is very unusual. I also just found out 3 weeks ago that Dr. Freeman past away suddenly and that I had to find another Rheumatologist. Luckily I have found another one and just had my first appointment with him. His name is Dr. Bowers and he treats many patients with AS. He believes we should keep going the route I have been going until it doesn’t work anymore.
One more thing I would like to mention about Dr. Samuels, the first Rheumatologist I was seeing. When I finally got my diagnosis of AS from Dr. Freeman, I applied for SSI Disability. I had 3 doctors who filled out the paperwork and were all in agreement that I simply cannot work. Unfortunately, since I was having so many problems and flare up’s very early in my disease and could not hold down a full time job, my eligibility date goes back to 2001. In order for me to be able to obtain disability benefits, my doctor from 2001 has to fill out the paper work and say that he believes I was disabled back in 2001. Well, guess what….Dr. Samuels won’t do it, and because of his lack of record keeping and no diagnosis, there is no way to fight it. I did hire a lawyer and everything, but because Dr. Samuels was unwilling to cooperate, we were never able to go before a judge and plea my case. Dr. Samuels is the only doctor in 2001 that was treating me and would be able to help me and he refuses! Unbelieveable……
New Hampshire United States of America