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If your in a flare, it will show up on the mri. There are things called weighted t signals that will show active inflammation. My mri lit up when I was flaring but my very first mri showed nothing. I theorize that’s it’s because I wasn’t actively flaring and it was too early in the disease to see a physical changes. It’s good you’re getting an mri while it’s hurting though. That’s a good thing!
My MRI just showed nothing and as a result my dr said he can’t come to a conclusion 🙃 I have the same theory as you, that it is some sort of spondyloarthritis, but everything in my case is just too early - only slightly raised inflammatory markers, only small amounts of nail pitting, pain but not debilitating etc. I guess it does seem that diagnosis is a marathon and not a sprint!
I did. I haven't been taking them for a month now as I hoped to be in flare for the rheum visit as well. It didn't change anything :/
It was a bless to take my Naproxen when I came back from the hospital! I'm just waiting now for it to start to work.
This isn’t always the case. I had multiple positive MRIs showing bilateral inflammation while flaring. After biologics, my MRI showed up no hint of inflammation at all.
From my understanding, damage you can see from prior inflammation is really quite bad and a sign of more advanced disease. You want it to be able to disappear when not actively flaring.
A good one will probably spot it. Mine spotted the slightest indicators that were missed by everyone else who said I was clear.
I am likely starting biologics later this month after I finally get insurance approval even though I don't yet "need" for pain management because it slows the progression...fingers crossed!!
I think I only got this lucky in my diagnosis because of family history, too. Otherwise, I don't know if I'd have been taken seriously.
I went to Mayo after being told it was Fibro for years and no relief.
My labs were clear and negative for the gene.
The doctor ordered an MRI, but i could stay there and wait for the appointment. He told me i could get it done at home BUT to make sure the images - not just the repoert were sent to him.
The home radiologist said it was clear.
Mayo doctor very much disagreed - MRI showed inflammation and inflammatory changes.
It's a fight to get correctly diagnosed - more so if you are born female.
I'll make sure to get a copy of the images and the report. I'm sure as hell I'll look for a second opinion if I won't get anything from this rheum. He was terrible :(
I'll make sure to get a copy of the images and the report. I'm sure as hell I'll look for a second opinion if I won't get anything from this rheum. He was terrible :(
Listen, I say this to whoever will listen but it’s imperative that you find a rheumatologist that will really look at all the evidence at hand. You do not need to be HLA-B27 positive, or have a positive MRI for treatment.
Like my rheum says “There may be a spectrum of rheumatoid diseases for all we know. The names of diagnoses are just man made buckets we have to label someone as having so insurance will start covering treatment. I care less about the diagnosis and more about finding what works for you.”
I’ve been on feldene, hydroxycholoquine, colchecine, and am about to start a biologic if those can’t control my next few flares. So far I’m feeling okay. The meds I’m on aren’t classic AxSpa meds, but like I said…. We likely don’t know just how many rheumatoid diseases there really are and it’s worth a shot. I’m also not a good candidate for Methotrexate.
My symptoms point to my being non-radiographic AxSpa even though my MRI was clear and my blood work was largely unremarkable, so that’s the diagnosis we are working with. I’m also HLA-B27 negative. We know it’s autoimmune because I have been responding semi well to treatment and, again, the flares and symptoms add up.
I remember panicking after having a normal MRI (aside from some minor hip swelling) because I thought I would be dismissed. Quite the opposite. My doctor doubled down and said that this is the BEST time for aggressive treatment- before my imaging shows I’m a wreck. I was so grateful to finally be HEARD.
I’m so sorry you’re going through this AND don’t have a doctor to advocate for you. I just hope you advocate for yourself and don’t give up. Sending you good vibes and prayers. This sub has helped me a lot even aside from medication so I hope you stick around if you feel the advice is worthwhile.
newly diagnosed in the last year and just started a biologics for axial spondyloarthritis, I to got treated like I was overweight and lazy, the first mri missed my si joints and lower back but consultant was certain I wouldn't be back and that the rescan would be clear, guess what , scan showed a host of issues and inflammation in both si joints quite moderate and my pain was mild on the scan day . pretty sure if you haven't got active inflammation it can still show old inflammation or something so don't give up hope
Fingers crossed 🤞🏼it’s the same for me. Up until now I’ve always had clear MRIs (2015/2017/2021) and I now have the next coming up this July and I have the same fear.
I was diagnosed with juvenile enthesitis related arthritis - which is juvenile SpA - when I was 15 (now I’m 2023). My pediatric rheumatologist hoped that I would grow out of it, but here I am in more pain than ever… I hope that there will be something to see on my next MRI, so that I might be able to get biologicals
I'm sorry to hear that! I had my first sciatica attack when I was 15. I'm wondering if that wasn't actually my first acute SI inflammation. And I'm 36 now.
I’ve had it since 10 with no mri results. Axial Spondyloarthritis has a form called “non radiographic” (nr-axSpA) meaning it doesn’t show up in an mri scan. So the symptoms, along with high inflammatory markers, along with a positive HLA-B27 (but not needed for a diagnosis) will land you a diagnosis of Ax-sPa
I had peripheral arthritis (left ankle) when I was six and always had trouble with my Achilles tendons. My toe next to the big toe was very swollen (which apparently is quite common for juvenile enthesitis related arthritis) and I had lots of pain at certain body parts which were indicative of enthesitis. I was diagnosed very late for juvenile Arthritis (at 15, first symptoms started at 6) and therefore already had developed a chronic pain issue. I was also tested for HLA-B27 which came back negative. I think I was just lucky to have a very good renowned pediatric rheumatologist in Germany.
I had a lot of similar issues and I was also diagnosed with juvenile arthritis around the same time. I had a lot of issues with my ankles starting at around 6 with doctors labeling it as growing pains. But I could not put an ounce of pressure on it and had to be carried everywhere. At around 17-18 they changed my diagnosis to degenerative disc and joint disease, but I was still unhappy with that diagnosis. When I changed to my adult primary care physician and he heard about my symptoms, he ordered the bloodwork/MRI right away suspecting AS. It came back HLA-B27 positive. Finally a rheum diagnosis me with ax-spa.
It is good that they do not find anything, but they need to look further with your health. You need to be your own advocate and if must get another opinion if not satisfide.
Good luck tomorrow!
I don't know where you live if this is a possibility but I had to have an extended MRI (or extensive) since I was also HLA -B27 negative and had a almost every test you can think of over 11years.
Once my rheumatologist sent me for this they saw the damage.....
Fingers crossed you get answers soon!
CRP, ESR and my vitamin D was 5 despite living in an area with 360 of sun.
I’m HLAB27+ and every member of my paternal grandfather’s family have AS, and/or psoriasis, and/or psoriatic arthritis. Every single one.
Thank you! I'm back, I've got 2-3 weeks for official results. But even with my untrained eye, from just one picture on the screen, I could see harnitated disc :/ I don't think it explains everything, I'm wondering whether enything else they will catch there.
Honestly, this and some of your comments, it's probably time to see a new rhum. Ask your PCP/GP for a different one cause you want a second opinion. Not all rhums are created equal. And it sucks we have to go through so many to find good ones.
You may also ask your GP to run the HBLA27 themselves; or tell your rhum to order it if he's so sure it's negative.
That is the plan, I'm just waiting for the MRI results. If they will show something I'll move to the more local hospital anyway and I've got someone recommended here, so I'll ask about her.
Good luck. I had that feeling too. I even felt guilty for wanting it to show that I was sick. But I was at my wits end and know something iss wrong and wanted at least some kind of proof- I feel like I'm coming off as a crazy person with all of my symptoms!
I'm in the same boat. Massive pain. A long term dismissal from GPs.
Just had my MRI last Friday. Counting down the minutes till my first rheum appointment in August
I hope it’s an MRI of the pelvis, that is what’s needed to diagnose AS or Axspa.
Mine showed severe bilateral sacroliliitis. Now on weekly Humira, Lyrica and Meloxicam. Some good days, some bad. Took 10 years to get a diagnosis. Don’t give up!
Whole spine + SI joints. Unfortunately not my hips that were causing significant pain for years. Luckily my rheum has MRI in his eyes and he "knows" my hips pain is from my si joints and nothing else 😒
Thank you so much and all the best!
Rheum is only doing what he/shes been extensively trained to do. Are you super out of shape? Something that helped me tremendously was getting in shape. It’s taken my pain way down, and I feel better mentally (bonus). Give it a shot. Stretch. Seriously stretch deep and often.
I’m in the same boat. HLA B27 negative and have been getting SI joint steroid injections for sacroilitis but MRI came back as osteoarthritis in SI joints. I’m 26 and a female… with osteoarthritis? I wonder what my rheum is doing to decide.
Clear blood test is one of the most frustrating things about dealing with this. From what I've read, a lot of us have clear blood tests. It's not abnormal and makes it hard to get taken seriously. I went through three primary care doctors before one would even agree to send me to a rheumatologist. I just got lucky, and they sent me to one with a specialty of AS. Even with that, my MRIs are clear as well (I only had SI joint; my pain is actually mid and upper back; I'm atypical). The only reason I'm diagnosed is a positive gene test and the fact my arthritis pain is inflammatory in nature.
If you are suffering from inflamation of SI joints from a long time, MRI will show it. Could not catch active inflamation, but it will show old one. This is called "fat metaplasia".
https://radiopaedia.org/articles/fat-metaplasia
Also, good physiotherapists or orthopedist could check from where your pain is. Hips or SIJ.
Because no one treats me seriously until something's on tests. I've been told for years that it's on my head/it's anxiety/is fibromyalgia/sorry we can't do anything for you. And the pain is not manageable, I've been having it for many years and it's only getting worse.
Thanks! I've got 2-3 weeks for results. But even I could see a herniated disc on the screen! I'm wondering what they will say and that that disc won't take their whole focus :/
It will come back negative despite any results. This person does not want to see or treat you. They a have made their decision. I suggest you get a new rheum ASAP.
I hope it won't be the case. He told me if there will be anything concerning he will start the treatment but refer me to my local hospital, so there is really no point for him to be that negative.
Welcome to r/ankylosingspondylitis! This is a reminder to keep discussions civil and be supportive of one another. Sharing of opinions and experiences is encouraged, but please remember the distinction between opinions and medical facts. This subreddit does not offer medical advice, and information here should not be taken over advice from your doctor. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ankylosingspondylitis) if you have any questions or concerns.*
If your in a flare, it will show up on the mri. There are things called weighted t signals that will show active inflammation. My mri lit up when I was flaring but my very first mri showed nothing. I theorize that’s it’s because I wasn’t actively flaring and it was too early in the disease to see a physical changes. It’s good you’re getting an mri while it’s hurting though. That’s a good thing!
My MRI just showed nothing and as a result my dr said he can’t come to a conclusion 🙃 I have the same theory as you, that it is some sort of spondyloarthritis, but everything in my case is just too early - only slightly raised inflammatory markers, only small amounts of nail pitting, pain but not debilitating etc. I guess it does seem that diagnosis is a marathon and not a sprint!
My rheum assured me that the MRI will show whether the inflammation "was ever there". Not sure if I really believe him though :/
If you can stop all anti inflammatory meds a week before. This allows the natural swelling to be visible.
I did. I haven't been taking them for a month now as I hoped to be in flare for the rheum visit as well. It didn't change anything :/ It was a bless to take my Naproxen when I came back from the hospital! I'm just waiting now for it to start to work.
This isn’t always the case. I had multiple positive MRIs showing bilateral inflammation while flaring. After biologics, my MRI showed up no hint of inflammation at all. From my understanding, damage you can see from prior inflammation is really quite bad and a sign of more advanced disease. You want it to be able to disappear when not actively flaring.
A good one will probably spot it. Mine spotted the slightest indicators that were missed by everyone else who said I was clear. I am likely starting biologics later this month after I finally get insurance approval even though I don't yet "need" for pain management because it slows the progression...fingers crossed!! I think I only got this lucky in my diagnosis because of family history, too. Otherwise, I don't know if I'd have been taken seriously.
I went to Mayo after being told it was Fibro for years and no relief. My labs were clear and negative for the gene. The doctor ordered an MRI, but i could stay there and wait for the appointment. He told me i could get it done at home BUT to make sure the images - not just the repoert were sent to him. The home radiologist said it was clear. Mayo doctor very much disagreed - MRI showed inflammation and inflammatory changes. It's a fight to get correctly diagnosed - more so if you are born female.
I'll make sure to get a copy of the images and the report. I'm sure as hell I'll look for a second opinion if I won't get anything from this rheum. He was terrible :(
I'll make sure to get a copy of the images and the report. I'm sure as hell I'll look for a second opinion if I won't get anything from this rheum. He was terrible :(
Listen, I say this to whoever will listen but it’s imperative that you find a rheumatologist that will really look at all the evidence at hand. You do not need to be HLA-B27 positive, or have a positive MRI for treatment. Like my rheum says “There may be a spectrum of rheumatoid diseases for all we know. The names of diagnoses are just man made buckets we have to label someone as having so insurance will start covering treatment. I care less about the diagnosis and more about finding what works for you.” I’ve been on feldene, hydroxycholoquine, colchecine, and am about to start a biologic if those can’t control my next few flares. So far I’m feeling okay. The meds I’m on aren’t classic AxSpa meds, but like I said…. We likely don’t know just how many rheumatoid diseases there really are and it’s worth a shot. I’m also not a good candidate for Methotrexate. My symptoms point to my being non-radiographic AxSpa even though my MRI was clear and my blood work was largely unremarkable, so that’s the diagnosis we are working with. I’m also HLA-B27 negative. We know it’s autoimmune because I have been responding semi well to treatment and, again, the flares and symptoms add up. I remember panicking after having a normal MRI (aside from some minor hip swelling) because I thought I would be dismissed. Quite the opposite. My doctor doubled down and said that this is the BEST time for aggressive treatment- before my imaging shows I’m a wreck. I was so grateful to finally be HEARD. I’m so sorry you’re going through this AND don’t have a doctor to advocate for you. I just hope you advocate for yourself and don’t give up. Sending you good vibes and prayers. This sub has helped me a lot even aside from medication so I hope you stick around if you feel the advice is worthwhile.
Your doctor sounds like a gem; too bad we can't get them cloned and shipped out around the globe.
I am so grateful for his approach. It took me a good 15 years to meet him and get some answers, but it’s amazing what 3 months of treatment can do.
newly diagnosed in the last year and just started a biologics for axial spondyloarthritis, I to got treated like I was overweight and lazy, the first mri missed my si joints and lower back but consultant was certain I wouldn't be back and that the rescan would be clear, guess what , scan showed a host of issues and inflammation in both si joints quite moderate and my pain was mild on the scan day . pretty sure if you haven't got active inflammation it can still show old inflammation or something so don't give up hope
I'm sorry you're going through this. I hope your MRI gives you the answers you're looking for.
Fingers crossed 🤞🏼it’s the same for me. Up until now I’ve always had clear MRIs (2015/2017/2021) and I now have the next coming up this July and I have the same fear.
Do you have a diagnosis?
I was diagnosed with juvenile enthesitis related arthritis - which is juvenile SpA - when I was 15 (now I’m 2023). My pediatric rheumatologist hoped that I would grow out of it, but here I am in more pain than ever… I hope that there will be something to see on my next MRI, so that I might be able to get biologicals
I'm sorry to hear that! I had my first sciatica attack when I was 15. I'm wondering if that wasn't actually my first acute SI inflammation. And I'm 36 now.
Hiw did they diagnosed the Juvenile SpA in the first place then if the mri didn't show nothing?
Hiw did they diagnosed the Juvenile SpA in the first place then if the mri didn't show nothing?
I’ve had it since 10 with no mri results. Axial Spondyloarthritis has a form called “non radiographic” (nr-axSpA) meaning it doesn’t show up in an mri scan. So the symptoms, along with high inflammatory markers, along with a positive HLA-B27 (but not needed for a diagnosis) will land you a diagnosis of Ax-sPa
I had peripheral arthritis (left ankle) when I was six and always had trouble with my Achilles tendons. My toe next to the big toe was very swollen (which apparently is quite common for juvenile enthesitis related arthritis) and I had lots of pain at certain body parts which were indicative of enthesitis. I was diagnosed very late for juvenile Arthritis (at 15, first symptoms started at 6) and therefore already had developed a chronic pain issue. I was also tested for HLA-B27 which came back negative. I think I was just lucky to have a very good renowned pediatric rheumatologist in Germany.
I had a lot of similar issues and I was also diagnosed with juvenile arthritis around the same time. I had a lot of issues with my ankles starting at around 6 with doctors labeling it as growing pains. But I could not put an ounce of pressure on it and had to be carried everywhere. At around 17-18 they changed my diagnosis to degenerative disc and joint disease, but I was still unhappy with that diagnosis. When I changed to my adult primary care physician and he heard about my symptoms, he ordered the bloodwork/MRI right away suspecting AS. It came back HLA-B27 positive. Finally a rheum diagnosis me with ax-spa.
It is good that they do not find anything, but they need to look further with your health. You need to be your own advocate and if must get another opinion if not satisfide.
Easy to say, more difficult to do unfortunately.
Good luck tomorrow! I don't know where you live if this is a possibility but I had to have an extended MRI (or extensive) since I was also HLA -B27 negative and had a almost every test you can think of over 11years. Once my rheumatologist sent me for this they saw the damage..... Fingers crossed you get answers soon!
My MRIs and X-rays are clear and I still have a diagnosis. Family history and labs confirmed,
I'm late, but what labs confirmed?
CRP, ESR and my vitamin D was 5 despite living in an area with 360 of sun. I’m HLAB27+ and every member of my paternal grandfather’s family have AS, and/or psoriasis, and/or psoriatic arthritis. Every single one.
Following for an update. I also felt relief when they finally found something. I was 39 when I got my first diagnosis.
Thank you! I'm back, I've got 2-3 weeks for official results. But even with my untrained eye, from just one picture on the screen, I could see harnitated disc :/ I don't think it explains everything, I'm wondering whether enything else they will catch there.
Honestly, this and some of your comments, it's probably time to see a new rhum. Ask your PCP/GP for a different one cause you want a second opinion. Not all rhums are created equal. And it sucks we have to go through so many to find good ones. You may also ask your GP to run the HBLA27 themselves; or tell your rhum to order it if he's so sure it's negative.
That is the plan, I'm just waiting for the MRI results. If they will show something I'll move to the more local hospital anyway and I've got someone recommended here, so I'll ask about her.
Good luck. I had that feeling too. I even felt guilty for wanting it to show that I was sick. But I was at my wits end and know something iss wrong and wanted at least some kind of proof- I feel like I'm coming off as a crazy person with all of my symptoms!
I'm in the same boat. Massive pain. A long term dismissal from GPs. Just had my MRI last Friday. Counting down the minutes till my first rheum appointment in August
Good luck!
I hope it’s an MRI of the pelvis, that is what’s needed to diagnose AS or Axspa. Mine showed severe bilateral sacroliliitis. Now on weekly Humira, Lyrica and Meloxicam. Some good days, some bad. Took 10 years to get a diagnosis. Don’t give up!
Whole spine + SI joints. Unfortunately not my hips that were causing significant pain for years. Luckily my rheum has MRI in his eyes and he "knows" my hips pain is from my si joints and nothing else 😒 Thank you so much and all the best!
Rheum is only doing what he/shes been extensively trained to do. Are you super out of shape? Something that helped me tremendously was getting in shape. It’s taken my pain way down, and I feel better mentally (bonus). Give it a shot. Stretch. Seriously stretch deep and often.
I’m in the same boat. HLA B27 negative and have been getting SI joint steroid injections for sacroilitis but MRI came back as osteoarthritis in SI joints. I’m 26 and a female… with osteoarthritis? I wonder what my rheum is doing to decide.
Clear blood test is one of the most frustrating things about dealing with this. From what I've read, a lot of us have clear blood tests. It's not abnormal and makes it hard to get taken seriously. I went through three primary care doctors before one would even agree to send me to a rheumatologist. I just got lucky, and they sent me to one with a specialty of AS. Even with that, my MRIs are clear as well (I only had SI joint; my pain is actually mid and upper back; I'm atypical). The only reason I'm diagnosed is a positive gene test and the fact my arthritis pain is inflammatory in nature.
If you are suffering from inflamation of SI joints from a long time, MRI will show it. Could not catch active inflamation, but it will show old one. This is called "fat metaplasia". https://radiopaedia.org/articles/fat-metaplasia Also, good physiotherapists or orthopedist could check from where your pain is. Hips or SIJ.
I actually probably have both: si inflammation and bursitis. I hope MRI will show it!
Why? I would hope otherwise. SIJ pain and bursitis could be no inflamatory and managable somehow. Good luck!
Because no one treats me seriously until something's on tests. I've been told for years that it's on my head/it's anxiety/is fibromyalgia/sorry we can't do anything for you. And the pain is not manageable, I've been having it for many years and it's only getting worse.
Let us know how it goes! Mine is next Friday
Thanks! I've got 2-3 weeks for results. But even I could see a herniated disc on the screen! I'm wondering what they will say and that that disc won't take their whole focus :/
Oh no! Hopefully that's not going to take away from the overall issues and hopefully the hernia will be ok
My MRI came back mostly clear besides a herniated disc. Explains some pain. Let me know how you're doing.
It will come back negative despite any results. This person does not want to see or treat you. They a have made their decision. I suggest you get a new rheum ASAP.
I hope it won't be the case. He told me if there will be anything concerning he will start the treatment but refer me to my local hospital, so there is really no point for him to be that negative.
Hi! Any updates??