Rheumatologist Appointment PT2 Chronic Illness Diagnosis Story Ankylosing Spondylitis
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- เผยแพร่เมื่อ 21 ส.ค. 2024
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Hope you are all having the best day with minimal pain!
Thank you for taking the time to watch my videos on my diagnosis story. I really hope you can find comfort and hope from them for yourselves, if you’re going through a similar thing. It may not feel like it now, you are exactly where you need to be in your life, and you’re on the right path. Be as strong as you can, and take each day one by one.Wishing you all a positive week, be kind to yourself and make healthy choices!
Let me know if you liked this video by giving it a thumbs up, this lets me know that you enjoy this type of content and I will make more for you. Remember to subscribe to my channel, I'd love it if you would stick around!
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Part 1 - Blood tests
• Chronic Illness Diagno...
Part 2 - Rheumatologist Appointment
• Rheumatologist Appoint...
Part 3 - Getting my diagnosis
• Getting My Diagnosis P...
Part 4 - Physio
• Physio PT 4 Chronic il...
Part 5 - Starting my medication
• Starting Medication PT...
Part 6 - My autoimmune disease Upgraded Itself
• My Autoimmune Disease ...
My video on tips of how I accepted my chronic illness
• How I Accepted My Chro...
My video about the mental challenges of living with a chronic illness
• The mental challenges ...
Need help with injecting your medication? do it with me!
• Inject Your Medication...
Explaining Ankylosing Spondylitis video
• Ankylosing Spondylitis...
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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.
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!!
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.
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 ♥️
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 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 🩷
I would just refer to it as your SI joint
I think I will from now on 😂