I started symptoms when I was 16, chiropractors and more chiropractors until my early 30's and I quit. Diagnosed at 43 :'( Two spinal fusion surgeries, 70% curve in my l 4, l 5 and because I walked around with a fractured screw for over a year after my first surgery that caused 6 discs to rupture which were caged in my second surgery along with rods, bigger now :/ pins screws etc etc etc, instead… read more
After 35 years, I finally found a Dr who did the right tests and was able to diagnose my problem. I had been told I was an attention seeking child, my pain was growing pains, it was psychosomatic and so on. Even as an adult the Drs would still doubt me as I had no real outward signs and my bloods always came back reasonably normal. To finally have a name, a reason has sent me on a high. When I woke up in pain today, I just felt lighter, almost happy because I could finally say to myself I was in pain due to my SpA, the MRI showed it was real.. The other things I have been experiencing (fatigue, brain fog, IBS symptoms ) all could be related to this too..
Yes, it took me five years before I was told I had AS. I visited at least 5 or more doctors trying to find answers. One ortho surgeon wrote in my report, "I believe the patient may have Waddles Syndrome". Naturally I looked it up, only to discover it meant I was probably suffering psychosomatic illness! Lastly, I went to a pelvic specialist to see if I had something wrong internally. She found nothing except that all my muscles beside my SI joints were trembling out of control for some reason. She recommended an arthritis doctor. From there it was discovered my SI joints had fused. I am so sorry for your terrible experience and send you my sincerest and best regards.
Ah, so you know where Columbus is near. Yeap, Benning. I won't complain much about my Tricare cause the alternate is scary. I think you know what I mean. In the large scheme of thing I've been beyond blessed with Tricare. Granted, when I went on Medicare (17 yrs ago), which then became my primary and Tricare for Life became secondary, life became much easier in choosing my doctors (no referrals needed). I do keep my PCM on Post. I've also learned over the past 4 decades within the military healthcare system that there is just as many bad as good healthcare professionals in the civilian vs military.
Going to Emory was the best move through. One, for reasons mention before with the off post Rheumatologist here in Columbus and two being a Group Practice of Rheumatologists. If mine is stumped with something she sits down with the other Rheumatologists and an array of many student doctors with lots of ideas. The 206 miles round trip was well worth it. Plus I get to spend the whole day with my honey (husband).
Understand about previous employment positions. Looks like we have a couple things in common. Chaplains Assistant when I was active to working in Healthcare to Government Contract as a Disciplinary Supervisor for 100 Union Mechanics to the EFMP at Fort Irwin, CA before my PCM finally told me to go home. Way too much Type A personality in me making my health probably worse with stress. So when I retired I guess I had to let loose on my doctors and my poor husband instead of my soldiers and employees. Just kidding.
Jeez, I best end this here. This is long. It is nice connecting with someone who has a similar background.
I also connected with a lovely lady a couple months back who was recently diagnosed and is from Columbus (not military). She happened to be friends with a good friend of mine that I went to church with for many years. Small world.
Ok, time to end.
Gentle Virtual Hugs your way.
I believe after many years of dealing with Idgits, losing your filter comes with territory.
Many years ago I absolutely lost it with a previous Rheumatologist (he was one of those said Idgits) and told him that he must of flunked the Bedside Manner class. I actually screamed it. The whole office and waiting room heard it along with some other choice comments. I didn't realize I was loud cause all I saw was red cause i was so mad. His phlebotomist heard me of course & told me that it was about time someone went off on him. I can safely say that he was the worse doctor I've ever had and I have had this disease for 30 years and being retired military with lots of different doctors over 37 years. My last appointment with this twit even threw his hands up in the air and said I don't know what to do with you. My husband happened to be with me at that appt. My husband looked at me and said are you finally (8 yrs of me being stubborn and lazy to find yet another Rheumatologist) ready to drive to Emory Atlanta now? Yeap. We only had 2 Rheumatologists in Columbus, GA. The other one.....no comment except I lasted 3 months there. Now there is only 1 in Columbus. The one that I had a difference of opinion retired. Good choice.
That was all about 6 years ago and we drive the 200+ miles round trip every 3 to 4 months. So worth it. I'm such a doofus for not firing him sooner.
I have never done that before and haven't since. Hope I don't have to either but I will.
Keep the strength
My 32 year old daughter is currently fighting for answers to her chronic pain and lethargy, mixed with intermittent rashes, allergic reactions, swelling and seeming to pick up every bug known to man! She has been like this since she was 3 years old and yet no doctor or specialist has answers other than wear and tear or psychosomatic! It doesn't matter how much we repeat that my eldest daughter has lupus, Ehlers Danlos and Hughes Syndrome, I have spondylitis, degenerative disc disease and osteoarthritis (although never gone any deeper than orthopaedic specialists), and my Dad also suffered all his life with the same symptoms, they refuse to admit that she has one or more of the autoimmune diseases she presents with symptoms of!
The last rheumatologist she saw, told her it was all in her head when we told her that she has general anxiety disorder, she assumed that she was exaggerating her symptoms to get attention. How can a 3 year old make an ankle swell and give her pain? That's how this all started 29 years ago. How can someone make their body have a fever one minute and be fine the next or catch everything that this life throws at them? (As in viruses and illness) How can someone fake anaphylactic shock? She has suffered since weaning at 4 months old with allergies, eczema and then asthma at 3 years old.
Sorry, I have ranted in this post, but I hate seeing her like she is, she has no life, when she does do something (anything away from her writers life) she is wiped out for 24-48 hours afterwards. My eldest had all this until she was expecting my grandson age 27, off her meds obviously, she was referred to a rheumatologist who took one look at her, asked if she was hyper-mobile and looked at her spine and told her she had lupus with slight scoliosis. Blood tests had never shown any inflammation until she was pregnant, the same with my youngest, so of course, that's another reason she isn't believed; but we now know that ANA levels and inflammatory levels are only raised when in a flare up! Why don't specialists know this?
Rant over! LOL