Looking for real data
Need info on the prevalence of Radiculopathy (swelling of the soft tissue around C-1 giving you pseudo carpal tunnel and much much worse things if left unattended) and any progression of symptoms associated with RA and this affliction.
This is MY story:
I had my index finger hand knuckle swell and lock up. then the other one. Then alternating off and on wrist, thought it was carpal tunnel, then a toe, then another finger joint….like ping pong. At one point things were so bad I literally couldn’t open a door, much less drive.
I was going to an acupuncturist and Chiropractor for back and neck from car wreck early in life I thought, football up to high school thinking I would live forever without ever going to a traditional doctor. I have a very low opinion on our current healthcare system and it’s Capitalistic intent. I noticed when he adjusted my neck the carpal tunnel would switch off completely and instantaneously.
Then, my condition worsened and I a started having a flare that lasted 6 months before finally going to a non-witch doctor for treatment of a torn medial meniscus, caused by my carpal tunnel and the inability to get up from the floor. I had insurance that I had not used, didn’t have a PCP, knew nothing about how things worked and was as lost as one could be. I remember doing a lot of research online and had come to the belief I might have RA prior to this, but was told by many people it was not RA, it couldn’t be RA, it was probably just arthritis form getting older, 53. Herein is my story of how my diagnosis unraveled. I think it VERY important to at least some people out there to impart this story from MY perspective.
Day 1 of healthcare
Fought through the red tape of insurance and the patient mill that was available to me through insurance. Was guide to my room where I was greeted by a nurse who weighed me but didn’t ask anything about my diet, only if I smoked, I did, quit 10 years ago. To which she replied, “Oh that’s good.” Whisked into the exam room where I first saw a med student, who was very kind, and asked a number of questions. In the very beginning I told him I thought the knee may be related to the RA. Finally, a Dr., not the Dr. who was listed as my PCP, came in and hurriedly ask some of the same questions. In the end, I was sent to an Orthopedist, specialist #1 for the knee. By this time my muscles had atrophied considerably due to the 2 week wait, after the 3 week “wait and see if this get’s better” bit.
There was another 1 week wait:
Day 2 and 3 of healthcare
The Ortho guy I went to was fairly well known and had shifted from sports to more aged population care, i.e. me. He was a no nonsense confident man in his 60’s. At this point, I might add averyone thought this was gout, my niece who has a degree in Nursing, my PCP was certain of it, and my Ortho guy was leaning towards that as well. I was needing to go TDY and he prescribed dose pack of methoprednisone and 30 day prednisone after that until I could get into see the least favorite Rheumo guy available. 2 more weeks of limping around on my swollen knee. 24 hours after taking the steroids, I felt like new again. My carpal tunnel went away completely, I had regained most of the motion I had lost in my neck, the swelling in my subsided enough to get around, but my muscles were looking pretty sickly by this point. THIS IS the important part: I had radiculopathy, undiagnosed at this time, I am now sure of this. My wrists felt better than they had in 8 months, like new. Weak, but I could use my hands. I was having trouble driving because I couldn’t turn my neck, I regained that motion and it was ALL overnight. It was like MAGIC. OK, blood tests for uric acid (gout) negative. RA factor 225. Uh oh. Ortho guy asked me what I thought and I told him I was not surprised by this at all. I don’t know how often people make their own diagnosis, but I had, and I guess some Dr.s take that better than others. Boy, I wish I were wrong!! Gout is a much easier sentence than RA, totally. On with the saga.
Day 3 and 4 of healthcare
Finally went to a Rheumatologist, one that had an opening (which was short for not that great a DR as it turned out, more on that later.) I brought him paper work that substantially proved I had RA, of course not from a man with an education, just someone who was experiencing the pain and suffering of RA, untreated RA that is. He threw the papers back at me, ordered more blood work, tapped my knee calling it gout, shot it full of steroids, and I was cured….of the swollen knee. I went home thinking I had to go back on my low purine diet, which is short for starvation diet, and felt pretty good at the prospects of taking a pill and going on with my life. But that pesky high RA Factor number was substantiated by my the VERY high CCP number 255, and now I had his attention. He had to swallow his pride a bit when he finally diagnosed me with RA. We left his office, my wife went with me, and went home to discuss the treatment options. Finally we came to grips with the bad news and decided to go aggressive. Methotrexate it was. 10mg, one time a week forever according to him. Stop enjoying wine, for the rest of my life. NOT HAPPY.
After blood drawn to check on liver and kidney after taking MTX for 4 weeks, no trouble with any of those, so good on me. I kept telling him I may be experiencing Radiculopathy because I could feel my wrists tingling. they are right now as I type this. I finally wrote it on a questionaire so it would be recorded and documented. He then referred me to an orthopedic surgeon. Finally, I am off to look at the one thing scares me most about this stuff.
After getting c spine X-Rays, and quite by coincidence, I went to my Ortho guy before going to the Surgeons office. Literally 1 hour apart. He asked me if there was anything else and I said in passing, I’m off to see this guy. He replied, wait, please get a second opinion if he recommends surgery. Gulp, not words you want to hear. He suggested I see someone else. And said if I had X-rays, he could look at them. Viola, I had them with. He looked at them, saw the Arthitis I have between c-4/5 c5-6 c6-7?? . Confimred what I already knew, trouble from stupid football and the car wreck in my 20’s. He looked at the C-1 and said he saw no evidence of radiculopathy, but an MRI would be in order to get a baseline of where we are at. Now I am in limbo waiting to find out what the MRI shows. So, if you made it this far, I commend you. What is the deal with radiculopathy? Anyone?
BTW, ok with the MTX. Sucks not to enjoy wine, beer, with food mostly.