Choosing an infusion clinic
1:43
2 жыл бұрын
Morning mental health bikeride
1:51
2 жыл бұрын
Why I don't post often
1:41
2 жыл бұрын
Switching to Remicade soon
2:50
2 жыл бұрын
SI JOINT Injection with MRI
1:51
2 жыл бұрын
December 27, 2021
3:03
2 жыл бұрын
You Deserve a good rheumatologist
9:54
Hospital Halloween Decoration Fail
0:21
The good Days are such a gift
1:03
2 жыл бұрын
A feeling gross day
5:45
2 жыл бұрын
Big toe fusion recovery Day 1
2:18
2 жыл бұрын
Work diversity ad for Amgen
2:19
2 жыл бұрын
August 30, 2021
5:01
2 жыл бұрын
July 8, 2021
1:07
3 жыл бұрын
May 31, 2021
3:04
3 жыл бұрын
Пікірлер
@brendaechols5929
@brendaechols5929 Күн бұрын
Getting it done in 2 months
@nicholaswatt9850
@nicholaswatt9850 Күн бұрын
I just had 1 today in my left joint and it made me jump but only because i had severe pain and constant lower back spasms, i wont know until about 3 days if its worked properly because at the moment its judt really sore from the actual needle, once the anaesthetic wears off you can really feel how sore you are from having a needle jammed into your joint 😅
@joeshanacard4438
@joeshanacard4438 2 күн бұрын
I have mines done tomorrow 🙏🏾 How was yours?
@livingwithbreastcancer7254
@livingwithbreastcancer7254 4 күн бұрын
Hello. I am experiencing neck and right arm severe pain as you describe in this video with ankylosing spondylitis. Have you found how best to treat this pain? I have this pain now and again, and, always, it's the same cycle in healthcare "ER visit with CT Scan, followed by a specialist appointment with MRI, followed by steroids and pain killers." I'm 54. I'm wondering if you have found a treatment plan that works to suppress inflammation and pain. Thank you for making this video.
@misskathleen490
@misskathleen490 29 күн бұрын
So did it really only last 4 wks? Or was that the setback from climbing?
@ankyspondy771
@ankyspondy771 28 күн бұрын
i'm not sure but I had it again recently and I'm about a month out and it's still working but the last procedure hurt even more than the first and I'm not sure I will do it again. I was shaking and crying and I took a lot of pain meds prior.
@Sundaylamb3
@Sundaylamb3 Ай бұрын
I noticed immediately pain relief
@Sundaylamb3
@Sundaylamb3 Ай бұрын
It's totally painless and it takes 1 minute the prep just waiting takes like 30
@aliciapopham9753
@aliciapopham9753 Ай бұрын
It's not too bad, I reccomend sedation of your a nervous person
@sadafamini8615
@sadafamini8615 Ай бұрын
Hi, I am at 4 weeks post opt from big toe fusion. I was told that I wont be able to bend my toe after this and it will alter the way I walk. Do you limp when you walk? I saw all of your videos but couldn't find your video walking. I feel really depressed. Please share your experiences.
@danplugaru8187
@danplugaru8187 Ай бұрын
First of all many people make confusion between ankylosins spondylithis and other forms of spondylathrities...AS= ankylosing Spondylithis is with sacroiliac inflamation on x-rays and first of all with spine fusion!! AS is 99% in young man ( after 60 years of AS i know what i say...) at women are another forms of arthritis but no AS WITH SPINE FUSION!!!!
@LuCaMW31
@LuCaMW31 2 ай бұрын
I get the injections once a year
@Ankolysing_Spondylitis
@Ankolysing_Spondylitis 2 ай бұрын
Hi tin woman, I`m cement man, I always feel my hip and sacroiliac joints are made of concrete. good luck, hope you find some quality of life
@peterkelly5672
@peterkelly5672 2 ай бұрын
My GP fobbed me off for 20 years from age 16 finally diagnosed and have had 2 hip replacements since on left. Side age 38 and 57 along with new medication 😂😂😂
@ankyspondy771
@ankyspondy771 2 ай бұрын
geez
@sushantbajpai4842
@sushantbajpai4842 2 ай бұрын
Try homeopathic medicine it's cheaper and effective 100% cure for ankylosing spondylitis within 2 years. Important part is you should start the treatment before your bones gets fused
@sushantbajpai4842
@sushantbajpai4842 2 ай бұрын
Hope you read my comment and get well.. if you want the name of the medicines reply on this comment
@Michelle-qd9gm
@Michelle-qd9gm 3 ай бұрын
Am in a wheelchair now with a ankylosing spondylitis the pain is so bad along with my IBD it is very painful
@ankyspondy771
@ankyspondy771 2 ай бұрын
I am so sorry to hear that you are in a lot of pain. I hope you can find something to give you relief. Was it your back that ended up putting you in the wheelchair or the si joint?
@Michelle-qd9gm
@Michelle-qd9gm 2 ай бұрын
@@ankyspondy771 it is my spondylitis and my chronic nerve pain after cancer I had xx
@Help04
@Help04 4 ай бұрын
Please anyone help me i got AS POSITIVE how to reduce pain which treatment is better please suggest 🙏🙏🙏🙏🙏
@ankyspondy771
@ankyspondy771 3 ай бұрын
i'm sorry to hear about your diagnosis. There is an nice community online to get advice from. Every medication works different for every person, so always be mindful of that when taking advice. I take Celebrex, Lyrica, Remicade, and I find if I don't do any kind of stretches or move my pain gets worse. I hope that helps.
@Help04
@Help04 3 ай бұрын
@@ankyspondy771 how was your health right now completely cured or not?
@glovere2
@glovere2 4 ай бұрын
It’s a very tough struggle and unique to each person. I’ve had AS for 35 years through different stages, beginning with the typical lower back stiffness until I needed a cane. In my 30s going on 80. My first x-ray got the radiologist out of the booth to confirm how old I was when the film showed an old man’s spine. It’s a tough break at the worst time when your life is just getting good. On the bright side, I finally got the disease under control in my late 50s and no longer have much pain or difficulty walking. Chronic fatigue is a different story. It’s a legacy of decades of systemic inflammation. It’s much more of a buzzkill than pain because you can manage pain and treat uveitis with steroids. The medications can mitigate the illness but not repair the damage done. But the path forward is the same as it always was. Find everything you can that helps and keep your connections with your support system strong or make new ones. Find ways to live a meaningful life regardless. Get the help you need. 😮
@ankyspondy771
@ankyspondy771 3 ай бұрын
well said ❤️
@jemeshchirayathjose4234
@jemeshchirayathjose4234 4 ай бұрын
So you’re saying that you don’t have HLAB 27 tested positive and still have AS ?
@ankyspondy771
@ankyspondy771 2 ай бұрын
yes correct
@Marlage
@Marlage 4 ай бұрын
I have A.S and am from Ontario as well. Lovely garden!
@chiaricharlie6608
@chiaricharlie6608 5 ай бұрын
With ya understand, same boat.
@lunacadence6050
@lunacadence6050 5 ай бұрын
How many weeks were you non weight bearing on the foot? Did u use crutches or anything special? Thank you.
@ankyspondy771
@ankyspondy771 5 ай бұрын
good morning. I used an Aircast and I think it was over three months before I compare weight on it without the cast
@ayoubwihi711
@ayoubwihi711 5 ай бұрын
Maybe you have the same situation i have talking about the stress in muscles and a lot of fatigue , i recommand taking magnesium and stop eating sugar this is what m doing and it helped
@sarahanderson7594
@sarahanderson7594 5 ай бұрын
fantastic explanation!!!!!! I will be sharing this with family for sure. I get tired of "complaining" to explain myself. My family gets tired of it too. I particularly loved the comment about dancing.
@1pab1
@1pab1 6 ай бұрын
I’m having fusion surgery in both feet soon. Enjoy your videos. I love black jelly beans! 🙉
@Guyhakverdi
@Guyhakverdi 6 ай бұрын
Did you also have digestive troubles like Crohns type symptoms?
@ankyspondy771
@ankyspondy771 6 ай бұрын
I have always had IBS symptoms, but I was never diagnosed with crows or colitis, and I have had a bunch of tests.
@garygoldstein9528
@garygoldstein9528 6 ай бұрын
How are you doing now?
@ankyspondy771
@ankyspondy771 5 ай бұрын
thank you for asking. It's been a rough year and I keep saying I'm going to get on here and make a video but it doesn't seem to happen. Maybe soon I put on about 15 pounds from the steroid they added to my infusion and not only does that make me feel not so great about myself, but it also adds to my pain because of the extra weight. I'm trying to lose it now.
@SPIDERPIDGE
@SPIDERPIDGE 8 ай бұрын
Hey, I've had AS for 25 years and I've tried pretty much all the medication available. I also have Multiple Sclerosis. You are not alone and I totally feel your pain, I've had days where I am in so much pain I can't walk or even stand. What I have found that works the best is sulphasalazine and carnivore diet and when your ready exercise, predominantly lifting weights to build muscle mass which is pretty easy on carnivore diet. I believe the problem many autoimmune sufferers have, especially with AS, is that it starts in the gut, our immune system is reacting to the gut bacteria and the gut bacteria is not normal in us due to our altered genetics eg HLAB27. The combination of sulphasalazine and carnivore diet will heal the gut and destroy the bacteria that our immune systems are reacting to. There was a lot of research done by Dr Alan Ebringer at Kings college London where he prescribed sulphasalazine with low starch diet. However he never tried carnivore and carnivore helps take it pretty much into remission if the protocol is followed strictly. Look up Dr Anthony Chaffee, Dr Ken Berry and Mikhalia Peterson on KZbin.
@knasheed8092
@knasheed8092 8 ай бұрын
Hi! Thank you for sharing. I am having this procedure later this month. I have a VERY low tolerance for pain and I was wondering what pain level (from 1 - 10) I should expect post-surgery. Also, what pain medication did your doctor prescribe, for how long, and did it help? Lastly, how did you keep that small area iced, and were you able to sleep. Any guidance you are willing to provide would be appreciated.
@ankyspondy771
@ankyspondy771 8 ай бұрын
I found it only hurt when I put pressure on it Pain around 9 when you accidentally put pressure in. Otherwise a 4. The walking cast boot is the best.
@rayfabian9488
@rayfabian9488 4 ай бұрын
Sorry, but her voice makes me want to go back on pain meds….yikes
@yousefshokir6481
@yousefshokir6481 8 ай бұрын
When were you diagnosed?
@ankyspondy771
@ankyspondy771 8 ай бұрын
She 16 with juvenile arthritis and 2014 with AS
@yousefshokir6481
@yousefshokir6481 8 ай бұрын
How is your current treatment for AS, would you say it's controlling your symptoms??@@ankyspondy771
@Themagnificent7th
@Themagnificent7th 8 ай бұрын
Thanks for posting, I am going to start remicade soon and I am just trying to see what others are going through...the day after is what scares me
@ankyspondy771
@ankyspondy771 8 ай бұрын
I can understand your trepidation. I have no side effects whatsoever after my treatments. If anything the next day actually feel much better. There were two visits where I got a little bit of an allergic reaction but the Benadryl helped it right away. Hopefully all goes well for you.
@Themagnificent7th
@Themagnificent7th 8 ай бұрын
@@ankyspondy771 Thank you for helping set my mind at ease! Right now I'm just on prednisone and it stopped my flare up (lost 30 lbs in a little over 3 weeks, scary times) and I had to wait for insurance to approve. Just glad to see we have a great community and we are in this almost like a family
@imveryhungry112
@imveryhungry112 8 ай бұрын
omg I have advanced arthritis in my neck. I have all the symtpoms you describe. its so hard. Psychologically i have to force myself to stay strong so i dont give up. I wish there was some type of support group for this because its really tough to deal with chronic pain psychologically. Especially if your not retired and still having to work full time.
@ankyspondy771
@ankyspondy771 8 ай бұрын
I totally understand what you mean.
@imveryhungry112
@imveryhungry112 8 ай бұрын
@@ankyspondy771 have you ever had spine surgery to help with the pain? If so, did it help the pain ?
@ankyspondy771
@ankyspondy771 8 ай бұрын
@@imveryhungry112 I had spine surgery on my neck and it made a massive difference in my pain. I am hoping to get some on my lower back in the future the recovery was tough but the pain relief was about 75% down.
@ankyspondy771
@ankyspondy771 8 ай бұрын
My neck is 70 percent better after surgery
@imveryhungry112
@imveryhungry112 8 ай бұрын
@ankyspondy771 that's good I might have to get spine surgery too. It sucks but it's life.
@ReRoy8
@ReRoy8 8 ай бұрын
Thanks for sharing - hang in there, you're not alone.
@Stringzippy
@Stringzippy 9 ай бұрын
I have axial spondyloarthritis. Is it the same as AS? Or does it lead onto AS? I have terrible stiffness and pain in my low back every morning. I drive to work with a hot water bottle. Seems to relieve it alot. Usually go by the time I get to work. But sometimes it's a 8/10 pain in the mornings. Debilitating
@ankyspondy771
@ankyspondy771 9 ай бұрын
Hi thank you for asking a question. I don't know if it's the same thing. I'm sorry you have pain and stiffness. That is very difficult.
@edadan
@edadan 10 ай бұрын
Hi Anky, my podiatrist is recommending fusion on my big toe. I have a lot of pain just walking but I'm concerned that it's going to affect my ability to walk, run, etc. How has your fusion affected your everyday life? Thanks!
@ankyspondy771
@ankyspondy771 9 ай бұрын
The fusion itself did not affect my ability to do Pickleball or cycling or walking. I don't run, so I'm not sure, but I do run quite a bit and Pickleball. it took about a year before I could do that though. The Toe does not have as much pivot, but it still works. You just have to adapt.
@nancyt.pasour7658
@nancyt.pasour7658 10 ай бұрын
Did AS show in your blood tests?
@ankyspondy771
@ankyspondy771 10 ай бұрын
No, it didn't, just on imaging
@Fomites
@Fomites 11 ай бұрын
Im sorry to learn of your malady. I hope you can find better relief soon. I don't have 'anky spondy' lol but I'm just interested as a medical student. You have a great attitude and presentation and are a beautiful woman too :-) Thank you for sharing your experience with this. From Australia.
@ankyspondy771
@ankyspondy771 11 ай бұрын
Thank you so much for your comments
@ibrahimbajko6591
@ibrahimbajko6591 11 ай бұрын
Dali je Vid ostecen nekom od bolesti AS??
@cjs46and2
@cjs46and2 Жыл бұрын
You get a full nights sleep😉
@sourabhnandwana
@sourabhnandwana Жыл бұрын
At what age you were diagnosed?
@kristenpresta9311
@kristenpresta9311 Жыл бұрын
Juvenile Arthritis at age 16, Ank Spond around 45
@sourabhnandwana
@sourabhnandwana Жыл бұрын
@@kristenpresta9311 you are a strong 💪 person. I was diagnosed in 2009 at the of 18. Going for hip replacement soon. Thanks for reply. Your word reminds me that I am not alone and give motivation.
@sourabhnandwana
@sourabhnandwana Жыл бұрын
Is anyone here whose hip are involved as well?
@kristenpresta9311
@kristenpresta9311 Жыл бұрын
yes mine are on both sides which makes sleeping tough
@AnkylosingSpondylitisMan
@AnkylosingSpondylitisMan 6 ай бұрын
Yes, my si joint on my left side has permanent damage
@tovekvernvik1263
@tovekvernvik1263 Жыл бұрын
👍🙏💜
@sknuts2783
@sknuts2783 Жыл бұрын
How is it now? My fusion ruined my life.
@ankyspondy771
@ankyspondy771 Жыл бұрын
Good morning. I have been very disappointed in my toe fusion. The big toe itself is not bad, but the rest of the foot that they broke to make room for the neuroma hurts every day. I am afraid to get the other side done until I get another opinion.
@annwalters4335
@annwalters4335 Жыл бұрын
@@ankyspondy771 I’m so sorry to hear that you are still suffering with your foot. It is so frustrating. I had a screw inserted into my left big toe months ago to form an artificial joint and had a large bone spur removed. It hurts worse now than before so I may be looking at fusion as well. I had a podiatrist do my surgery but wondering if I should now go to an orthopedic surgeon. Which did you have? Also, as a woman who needs to wear dress clothes for work, I was wondering if you have found any shoes you can wear other than sneakers.
@ankyspondy771
@ankyspondy771 Жыл бұрын
@@annwalters4335 hi Ann. In the fall I wear flat below my knee, riding tight boots with my dresses and pants. They are comfortable on my feet, and it looks very classy and a bit sexy so I like that look. Very Ralph Lauren in the nicer weather, I buy my sandals that are platforms so they have the impression of being high heels, but are comfortable on my feet. Let me see if I can add a picture here. Shoot, I can't attach a photo. They are made by Sam Edelman circus and they come in lots of pretty colours and they have a chunky look.
@ankyspondy771
@ankyspondy771 Жыл бұрын
@@annwalters4335 I forgot to answer your question about my surgeon. It was an orthopaedic surgeon that specializes in feet.
@annwalters4335
@annwalters4335 Жыл бұрын
@@ankyspondy771 Thanks so much for the info! Best of luck to you with your foot.
@pa.fishpreacher6166
@pa.fishpreacher6166 Жыл бұрын
How is the pain after that ? Were you numb when you woke up?
@daveelliott2055
@daveelliott2055 Жыл бұрын
Are you still doing infusions? Any luck?
@ankyspondy771
@ankyspondy771 Жыл бұрын
Hi Dave, yes I am still doing infusions and I have just moved recently to every four weeks which is working well for me because I found that it was wearing off at four weeks.
@nickyannajones
@nickyannajones Жыл бұрын
I got it and I found the injection was very painful even tho they gave me something to numb it and my pain was horrid after the injection. After 5 days I started taking my tramadol again. But in 4 weeks I've gone from 1 tramadol a day to 3 a day. 😢
@nickyannajones
@nickyannajones Жыл бұрын
Oooo I love your garden. I want to start gardening and yes, it's rough. I do want those veggies without chemicals so I'm going to need to start. I haven't looked at all of your videos but I'd love it if you posted more about how you garden and how you maintain it without wearing yourself out
@nickyannajones
@nickyannajones Жыл бұрын
Ty for posting
@nickyannajones
@nickyannajones Жыл бұрын
The Spoonie analogy is excellent. Ty
@nickyannajones
@nickyannajones Жыл бұрын
I was out last night and had the opportunity to dance. I did feel the pain. It sux because I've always loved dancing. Ty for posting
@ankyspondy771
@ankyspondy771 Жыл бұрын
I know I love dancing too. It's so frustrating. I have gone out after that and I danced a little bit and as soon as I felt a little bit of a twinge, I stopped and not really help me to feel better the next day. But it was very hard to tell.
@AlexLevineFitness
@AlexLevineFitness Жыл бұрын
I am a personal trainer with AS, my whole existence is doing “my own bizarre stretches” Thanks for sharing your story!