I was diagnosed with Ehlers Danlos Syndrome in 2014 after constant shoulder dislocations. Top half of my body is hypermobile. I’ve had inflammation in my Sacroilliac Joint on the right side of my hip since September last year. This month i could barely walk. Bottom half of my body is stiff and painful, especially on rest. My GP has been amazing, she spent alot of time in Rheumatology during her training so did the HLA-B27 test (i didn’t know this at the time). I’ve also had slight inflammation during previous blood tests for over a year. It came back positive. I then went to have an X-Ray and my hip joint has Osteoarthritis, thickening and subchondral sclerosis. My GP is 99% sure i have AS now and am waiting for Rheumatology appointment. I’m a Nurse…36 years old. I hope they sort you out and GET A SECOND OPINION!!
Sorry about your experience...I know how awful it feels, been there as well...I have been having some array of muscosceletal and neurological symptoms, which GP believes could be related to autoimmune disease. I got refferal for reumathology appointment for which I been waiting about 3 months( I am in South West UK). In meantime I was visiting my homecountry Poland for short family venue and manage to get private reumathology app there and done some blood tests as well (which come out mildly positive- for AA and inflammation). And reumatologist advice was to do MRI scan as well and maybe see neurologist to rule out MS..Back to UK and reumathology visit - it was short, less than 15minutes..i been asked few questions, I had list of symptoms which rheumatologist flick through without paying too much attention to it. It felt like I am "another case" which needs to be documented...and than it was 2 weeks later- The Letter. When I opened after few lines I burst in tears. I couldn't belive - my doctor didn't believe me anything, my main symptoms and pains were not there in "case descriptions". My blood test done in Poland was described that "patient belive it was mildly positive"( blood results - it was black and white- ratio number plus description that it is mildly positive). The facts about my symptoms were marginalised or dismissed at all... and at the end was stated that if my blood results done in uk after my appointment will come out negative Rheumatologist says "it will be undifferentiated connective tissue disease or despite the absence of fibromylagia trigger points tenderness he feels with confident that my symptoms relate to fibromylagia alone "... no MRI scan, no X ray done just screening me for less than 15 minutes with his tired eyes and he strongly believes that I suffer from something which has no tests and most doctors don't even belive in fibromylagia...basically I feel like he thinks I am anxious and stressed and nothing is wrong with me... I can not belive how dismissive and unhelpful doctors can be. They make you feel more awful in those difficult time when you are in pain and trying to figure out why...which I am still trying to do...
It’s so similar to what you went through, I’m sorry so hear this. I wish they took us more seriously, it can be so lonely going through all this, the least we ask is for a Doctor to support us, just believe us. You should try and do what I did, ask for a second opinion, say your not happy with the outcome that Rheumatologist gave you. Keep pushing until they answer all your questions. I really hope you find the issue, so they then can get you on the right meds, the facts and a liveable life is all we ask for ♥️
The rheum sounds terrible. Some people have spondylitis from sero-negative Sjogren’s. Please don’t give up. I have your symptoms with Sjogren’s spondylitis and Plaquenil works really well for the pain.
You are very well spoken and well informed. Looking at this from an objective perspective - I agree with you. I don’t agree with a lot of patient videos where people seem like they’re exaggerating unrelated symptoms. Your symptoms sound spot on for some type of spondylitis - which I’m very familiar with. It seems like the rheum didn’t listen to your history.
Thanks for your descriptive explanation. I have an appointment coming up and I need to be prepared for the extremely cautious view the Dr’s can take even without the proper tests. You could work in the field helping people. You know what it’s like.
Thank you for watching! (Sorry for the late reply) I hope your appointment went well! Awww thank you, thats a really sweet thing to say ☺️ I hope you are doing okay!
I walked into my appointment limping, and the rheumatologist said that's strange it's not normal symptoms of arthritis. I got mri and it was AS. Now my rheumatologist refuses to listen to any of my concerns. Honestly sucks
Your case had like a 99% plausibility given your sister’s diagnosis and everything you experienced symptom wise. You are likely slightly hyper mobile as well, most dancers and gymnasts are (myself included). I had gone through a ton of doctors, through the entire medical system, looked at numerous causes which I had to guide. The second last disease I explored was EDS (Elhers Danlos Syndrome) which is a cartilage and joint disorder that has a lot of similarities with AS. I didn’t for the bill but the doc did mention that I was still hyper mobile (flexible). So you can have better range of motion and still have AS!
I have Ehlers Danlos Syndrome AND have just been diagnosed with Ankylosing Spondylitis. Top half of my body is hypermobile, bottom half is stiff and painful.
Can you send a letter to him and answer each item specifically. He paid zero attention to what you told him. He was being a self serving jerk! I am in the same boat you are in. I live in the USA. No one seems to want to help. We have a lot of the same symptoms but I am considerably older than you. I wish you the best. Thank you for sharing.
I mean i understand your doctor's conclusion. Nothing against you but the subjectivity of symptoms description by a patient can be really misleading. So basically you told him that you have a pain that shoots down your leg ? That's not typical to AS really, looks more like a herniated disc and sciatica. At the same time you told him that Naproxen did nothing for you, which is again not really in line with AS, since AS is only inflammatory and an NSAID will be highly effective, that would be totally different in case it is a mechanical pain. Also movements aggravate the pain, nothing like AS because AS people will hate sitting/laying still their pain will get worse that way, that is why they need to get up at night and move around the house. If indeed this is what you feel, i really don't think you have AS
I was diagnosed with Ehlers Danlos Syndrome in 2014 after constant shoulder dislocations. Top half of my body is hypermobile. I’ve had inflammation in my Sacroilliac Joint on the right side of my hip since September last year. This month i could barely walk. Bottom half of my body is stiff and painful, especially on rest. My GP has been amazing, she spent alot of time in Rheumatology during her training so did the HLA-B27 test (i didn’t know this at the time). I’ve also had slight inflammation during previous blood tests for over a year. It came back positive. I then went to have an X-Ray and my hip joint has Osteoarthritis, thickening and subchondral sclerosis. My GP is 99% sure i have AS now and am waiting for Rheumatology appointment. I’m a Nurse…36 years old. I hope they sort you out and GET A SECOND OPINION!!
Sorry about your experience...I know how awful it feels, been there as well...I have been having some array of muscosceletal and neurological symptoms, which GP believes could be related to autoimmune disease. I got refferal for reumathology appointment for which I been waiting about 3 months( I am in South West UK). In meantime I was visiting my homecountry Poland for short family venue and manage to get private reumathology app there and done some blood tests as well (which come out mildly positive- for AA and inflammation). And reumatologist advice was to do MRI scan as well and maybe see neurologist to rule out MS..Back to UK and reumathology visit - it was short, less than 15minutes..i been asked few questions, I had list of symptoms which rheumatologist flick through without paying too much attention to it. It felt like I am "another case" which needs to be documented...and than it was 2 weeks later- The Letter. When I opened after few lines I burst in tears. I couldn't belive - my doctor didn't believe me anything, my main symptoms and pains were not there in "case descriptions". My blood test done in Poland was described that "patient belive it was mildly positive"( blood results - it was black and white- ratio number plus description that it is mildly positive). The facts about my symptoms were marginalised or dismissed at all... and at the end was stated that if my blood results done in uk after my appointment will come out negative Rheumatologist says "it will be undifferentiated connective tissue disease or despite the absence of fibromylagia trigger points tenderness he feels with confident that my symptoms relate to fibromylagia alone "... no MRI scan, no X ray done just screening me for less than 15 minutes with his tired eyes and he strongly believes that I suffer from something which has no tests and most doctors don't even belive in fibromylagia...basically I feel like he thinks I am anxious and stressed and nothing is wrong with me...
I can not belive how dismissive and unhelpful doctors can be. They make you feel more awful in those difficult time when you are in pain and trying to figure out why...which I am still trying to do...
It’s so similar to what you went through, I’m sorry so hear this. I wish they took us more seriously, it can be so lonely going through all this, the least we ask is for a Doctor to support us, just believe us.
You should try and do what I did, ask for a second opinion, say your not happy with the outcome that Rheumatologist gave you. Keep pushing until they answer all your questions.
I really hope you find the issue, so they then can get you on the right meds, the facts and a liveable life is all we ask for ♥️
The rheum sounds terrible. Some people have spondylitis from sero-negative Sjogren’s. Please don’t give up. I have your symptoms with Sjogren’s spondylitis and Plaquenil works really well for the pain.
You are very well spoken and well informed. Looking at this from an objective perspective - I agree with you. I don’t agree with a lot of patient videos where people seem like they’re exaggerating unrelated symptoms. Your symptoms sound spot on for some type of spondylitis - which I’m very familiar with. It seems like the rheum didn’t listen to your history.
Thanks for your descriptive explanation. I have an appointment coming up and I need to be prepared for the extremely cautious view the Dr’s can take even without the proper tests. You could work in the field helping people. You know what it’s like.
Thank you for watching! (Sorry for the late reply) I hope your appointment went well! Awww thank you, thats a really sweet thing to say ☺️ I hope you are doing okay!
I walked into my appointment limping, and the rheumatologist said that's strange it's not normal symptoms of arthritis. I got mri and it was AS. Now my rheumatologist refuses to listen to any of my concerns. Honestly sucks
I am so sorry you experienced this 😔 can you ask to see someone else, get a second opinion? It’s a hard process, but keep pushing for answers 🩷
Your case had like a 99% plausibility given your sister’s diagnosis and everything you experienced symptom wise. You are likely slightly hyper mobile as well, most dancers and gymnasts are (myself included). I had gone through a ton of doctors, through the entire medical system, looked at numerous causes which I had to guide. The second last disease I explored was EDS (Elhers Danlos Syndrome) which is a cartilage and joint disorder that has a lot of similarities with AS. I didn’t for the bill but the doc did mention that I was still hyper mobile (flexible). So you can have better range of motion and still have AS!
I have Ehlers Danlos Syndrome AND have just been diagnosed with Ankylosing Spondylitis. Top half of my body is hypermobile, bottom half is stiff and painful.
Can you send a letter to him and answer each item specifically. He paid zero attention to what you told him. He was being a self serving jerk! I am in the same boat you are in. I live in the USA. No one seems to want to help. We have a lot of the same symptoms but I am considerably older than you. I wish you the best. Thank you for sharing.
Oh no, I’m sorry your going through this, keep pushing them to get the answers you want. I hope you get it sorted soon, sending love from London
I would just refer to it as your SI joint
I think I will from now on 😂
I mean i understand your doctor's conclusion. Nothing against you but the subjectivity of symptoms description by a patient can be really misleading. So basically you told him that you have a pain that shoots down your leg ? That's not typical to AS really, looks more like a herniated disc and sciatica. At the same time you told him that Naproxen did nothing for you, which is again not really in line with AS, since AS is only inflammatory and an NSAID will be highly effective, that would be totally different in case it is a mechanical pain. Also movements aggravate the pain, nothing like AS because AS people will hate sitting/laying still their pain will get worse that way, that is why they need to get up at night and move around the house. If indeed this is what you feel, i really don't think you have AS