Hi I'm new to the Forum and I am posting my symptoms in my background because I would like to learn a little bit more about my situation as well share some information with the rest of the members.
(I am using a voice to text on my phone so I apologize in advance for mistakes)
So I was diagnosed with juvenile rheumatoid arthritis back when I was 11 years old I woke up one day and I had a very sore left hip to the point where I couldn't even walk Sol my general doctor he looked at it noticed that my immune system in my white blood cells are elevated referred me to the hospital after a long process they figured out that I had a romantic or anti-inflammatory disease.
It was eventually whittled down to AS and I had to stop playing ice hockey soccer and so forth until about my late teens my rheumatologist finally let me go back to playing soccer and I live a relatively pain-free life for my teens twenties and thirties. I even served in the military and ran well with no impact to my health.
I did have an episode with iritis when I was 19 during the summer to the point where the steroid drops were not working and I had to get a shot of steroids in my eye since then that's the biggest symptom I deal with with a s up until now and I'm at I'm now 44
I lift a lot exercise at the gym in fact when I refer to lifting I do a lot of squats as well as deadliest I can deadlift around 400 I can squat 315 lately I've been backing off the squats do to my knees being sore nothing to do with a s however I play a lot of golf so for the last month I haven't lifted as much because I didn't want to be as tight on the golf course and see how my golf game
But what I've noticed is since I haven't been lifting is my AS symptoms have really come on strong over the last month in fact I went to my Orthopedic thinking I had a bulging disc but it's actually been my lower back with the as as well as my feet and a couple other places in my ankle so I'm not sure if as I'm advancing age this disease is going to be a little bit more impactful in my life style.
I also have been dealling with colitis for the past couple years but chalked it up to getting old. I visit a Rheumatologist in a couple weeks to see the deal.
I just feel straight up ibuprofen 800mg causes GI issue then GERD then Chest Pain thinking it's impacting the heart or something. I don't know, I even try spacing Mobic out to every other day and still I get the pounding headaches and blood rushing through my fingers and head etc.. I told my doc and he said hes never heard of that before. I don't know if it's the drug or what doing this.
I reacted very poorly to Arthrotec - this one caused severe chest pain.
I don't think any NSAID is inherently better than another. It all depends on each individual's situation and how they react to each medication. Mobic is a good example of this. It handled your pain very well, and many other people have good success with Mobic. It did nothing for me.
I am currently taking Celebrex on an "as needed" basis and find it is doing well for me, as long as I don't take it on an empty stomach.
Perhaps I just got a little bit too lazy today or too sucked into reading about eosinophils Interleukins etc but can someone refer me to some recent papers related to cox1/2 inhibitors serious impact on other than prostaglandins?
Celebrex is best if you have GI troubles. There was once a concern that Celebrex, like Vioxx, increased the risk of heart attack, but a recent study (last year or year before) showed that Celebrex is no worse for the heart than other NSAIDs. (I mention this just because you might run across some old articles on the internet warning of Celebrex's heart risks).
I have taken about 6 or 7 different NSAIDS in the last 9 years. The only one that did not help me at all was Celebrex. The other ones I have stayed on until I got side effects or my rheumatologist didn't think they were helping enough. I think that periodically my body just wants a change in meds. I am back taking Naproxsyn after feeling that Meloxicam wasn't helping me. Naproxsyn was my first NSAID after diagnosis and I got some side effects after two years. But right now I am having very good results with it.
We are very individual in how we respond to medications so you just need to continue your science experiment on "you."
Yes: You checked most of the boxes for active advanced AS. Would of course do the testing previously recommended, making certain they do not use the serological B27 method (Fc or ELISA is definitive, but a full HLA tissue work-up might be the most instructive as other MHC can be involved in AS). SIJ X-ray imaging would be helpful, also. The book "The IBS Low-Starch Diet," by Carol Sinclair has helped many with AS; she is HLA B27 positive, but people who are not have also benefited from her regimen.
Okay, having that information, I would present your new PCP with an outline of what has happened to you over the past 10 years, including the doctors you've seen and what they concluded (if anything). Do it in chronological order. I would bring copies of any imaging and medical records that you have to the appointment. I would ask for bloodwork, specifically an autoimmune panel, CRP, ESR, and the HLA-B27 genetic test, and I would ask for a referral to a rheumatologist who is familiar with AS and related diseases. You may have to travel to an academic medical center to find that person. There's a rheumy at OU in Oklahoma City, Dr. Priya Prakash, who claims to have expertise in AS. Good luck.
My new PCP is a DO. I think she may be able to see and understand things a normal PCP doesn't. That's my hope anyway.
Seriously, I've been to the best neurosurgeons and spine specialists in Oklahoma. I get a great big "HHMMPPHH, that's weird!" No answers though. I'm 100% certain you are right on delayed diagnosis of 7-10 years. We're looking for a mechanical issue when it's most likely something else entirely.
I'm tired of screaming for help and finding none from the medical community. That's why I came here to ask for advice. A whole bunch of people have been through this. I must learn from them and use the information to try a new approach.
Thank you, SouthernMoss. I've seen your posts and you are very kind and informative. I appreciate you taking time just to chime in.
I can't believe that none of the many doctors you have seen ever suggested that you see a rheumatologist. It takes the average AS patient 7-10 years to be diagnosed, and in my opinion part of the reason is that so many patients do not see a rheumatologist until years into their journey.
As Winston said, a PCP is not going to make an AS diagnosis. But with your spinal issues there should be no problem in getting a referral.
I hope you are able to find answers soon. Keep us posted.
My back began fusing and collapsing on its own. It causes a lot of pain. I have pretty good diagnostic x-ray/MRI and other documentation showing the progression of the issues. I honestly suspect I have had this for years but it didn't become acute until my late 30s. My mother has multiple back and bone issues but has not been diagnosed with AS specifically. My father has had a knee replacement from arthritis. Bone and back issues definitely run in the family.
The symptoms list is more of a diary than anything. I know some are more indicative of AS than others. Nothing has been ruled out by any of the many doctors I have seen. I've been to a lot of doctors and there has been a lot of head-scratching. Nobody understands why this is happening but I have not had any testing for any autoimmune diseases or even seen a rheumatologist.
I desperately want there to be an answer but I'm trying not to shop or steer for one. I know there may never be one but I continue to deteriorate to the point I am almost non-functional. I can barely work and getting around is difficult at best. Just going to Wal-Mart is a chore and I pay the price for it later.
There is no one test for AS. The HLA-B27 genetic test is a clue but is not dispositive. Elevated inflammatory markers in the blood (sed rate and CRP) are also clues but are not dispositive (nor is the absence of elevated inflammatory markers dispositive). The diagnosis is made on the basis of clinical symptoms, age at onset of symptoms, family history, and radiographic evidence, if any. I doubt a PCP would make the diagnosis. He/she would refer you to a rheumatologist if AS is suspected. So I guess your goal for this appointment is just to get that referral? A positive HLA-B27 genetic test, standing alone, should get you that, but it does not mean you have AS.
You have a very long list of symptoms, some of which are associated with AS and others which are not. Some of them are also so medically-specific that it makes me think you have seen doctors of some sort over the past ten years for these symptoms. So what makes you think AS? Is there a family history? Have other possible causes of your symptoms been ruled out by doctors, e.g., other autoimmune diseases?
My real name is Jay. I'm a 47yo male. I have been in a health freefall for over 10 years. Based on my own research and the fact I've never been tested, I have a strong suspicion that I have AS. My symptoms are below for those who wish to read further. If you want to know more of my story, please ask and I will post. Let's just say my chronic medical condition has destroyed my entire life and I have fallen through every crack in the system trying to get help.
I'd like to ask the advice of this sage community. I will be going to a new PCP who is a DO on July 25th. What should I ask my new doctor to try and prioritize testing for AS and treatment?
I know I need a rheumy but I need a PCP first. I also want a rheumy that knows something about AS. Being in central Oklahoma my choices are limited.
Please accept my thanks in advance for any advice given.
Severe lower back pain Auto-fusion of spine joints (L5/S1 causing permanent nerve constraint) Neck pain Shoulder pain Hunched-over posture veering to the left Unsteady on feet Frequent kidney stones IBS-d inconsistent Loss of some sensation in lower body particularly on left Can’t sleep in a bed, must remain somewhat upright Some trouble swallowing Pain in toes and heels Difficulty sleeping Exhausted all the time Physical movement feels like a struggle Dry flaky skin around nose and mouth Chest can feel tight at times Blurred vision Loss of range of motion in back and neck TMJ Teeth are brittle and coming apart Sleep apnea Anxiety Severe depression Feeling of being warm all the time Hair loss Cannot sit upright for long periods, must recline but not go flat Sensitive to light Degenerating or bulging discs Brain fog, difficulty concentrating Restless legs sensation Sinus tachycardia High blood pressure Osteopenia (or full-on osteoporosis by now) Buttock pain Diminished appetite Orthostatic hypotension Pay the price of physical activity next day in severe pain
hello, I have been waiting for the biopsy results from colonoscopy finally arriving today. However it brought only more confusion for my gastroenterologist. Initially, she suspected an early Crohn, manifested by occasional red spots covered with white mucus in the small intestine only (no large intestine, duodenum or stomach).
The histopathological examination came back with: suspicion of Eosinophilic Gastroenteritis. Doctor does not understand the results at this point and she has to consult.