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General Message Board for Ankylosing Spondylitis and Related Diseases
12/13/17 07:14 PM
My response was like Ginny's. Subtle changes gradually over time. One of the first things that went away for me was my heel pain that had been there for years- that went away 2-3 weeks after starting Humira. Then the fatigue started to lift. Spine pain took longer, and SI-joi...
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309 Views · 6 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
12/13/17 07:03 PM
Exercise helps me a lot, and if I slack off, that is when I tend to get into flairs. But this is circular- when I don't feel well, everything hurts and the last thing I want to do is exercise. But when I start moving, I start to feel better. Swimming (lap swimming), walking an...
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843 Views · 10 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
12/13/17 01:45 AM
When the podiatrist said your x-rays were "far from normal" was he only looking at x-rays of your foot/feet? I know it's frustrating when something is wrong but the tests don't prove it out. I'm fortunate that I had a rheumy that based my diagnosis on more than just x-...
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172 Views · 4 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
12/12/17 11:43 PM
A foot doctor diagnosed me too. Several rheumys said that there was no evidence of damage or inflammation (bloodwork normal). Said all my joint pain was menopause. I walked into foot doctor and he was shocked I was only on anti inflammatory meds. I had seen several specialists....
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172 Views · 4 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
12/12/17 06:39 PM
OMG. Yes!! Consistency is key....
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843 Views · 10 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
12/12/17 06:36 PM
Having had AS for over 30 years, I can tell you that daily exercise is critical in managing this arthritis. If you are just beginning a program, start with shorter intervals of 10-20 minutes and do that several times a day. Most instructors have no idea what AS is. So, you need...
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464 Views · 10 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
12/12/17 06:28 PM
Hi SNova, Three years ago I had the exact same issue that I am experiencing now. (Last time it lasted from Sept until January) The Dr. (who is both an eye Dr and a plastic surgeon specializing in the eye area) is the one who gave me the non-invasive things to try first. I see hi...
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162 Views · 2 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
12/12/17 06:26 PM
There is plenty of evidence linking AS and HLA-B27 to heart problems. Gosh, even the Wikipedia page on AS discusses it at length. The three heart (or heart-related) problems that AS and HLA-B27 tend to cause are: (1) arrhythmias, (2) aneurysms of the aortic root and ascending aor...
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196 Views · 8 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
12/12/17 04:45 PM
Me too. My heart rate monitor on my watch shows my heart rate either plummeting or spiking at really bizarre times. For example it drops to the 30 bpm and i can tell it is happening because I feel like I am going to fall over. I did collapse in May but got back up. Other times i...
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196 Views · 8 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
12/12/17 04:07 PM
I have the same problem, I have even stated that I sometimes have pain associated with them. I wore the 24 hour halter, and didn't have any while I wore it. I sort of wish I insisted on the 30 day one. As they are frequent. I also have had 5 generations of family on my fathers si...
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196 Views · 8 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
12/12/17 01:29 PM
I do things I like to do. Swimming is wonderful, the perfect exercise but I can only do it in the summer. Gardening too, but again, that is three seasons. One of my goals is to find an indoor swim pool Anna...
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464 Views · 10 Comments
Off-Topic Forum
12/12/17 01:27 PM
I don't know if anyone is managing it, at least it isn't taken down. Yes, a whole year. He used every method there is to not only get the word out about AS but also reached out to the medical community. He was on TV, he got a couple of us to hand out info in Times Square (when ...
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111 Views · 3 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
12/11/17 06:02 PM
I don't understand but I saw two rehum who both said spondalytitis does not have any impact on the heart. I even show them articles about it and they said its rare or not frequent they don't worry about it. Well not rare in my case and it seems to be doing something but there put...
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196 Views · 8 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
12/11/17 06:01 PM
What is there to be done about chest flutters if ekg, electrocardiogram is normal, holter monitor is normal. Is anyone in similar situation? At what point do you know AS has impacted your heart?...
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196 Views · 8 Comments
Off-Topic Forum
12/11/17 02:54 PM
He had the best haiku's....
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111 Views · 3 Comments
Off-Topic Forum
12/11/17 07:53 AM
Hard to believe a year has passed already. Is anyone managing his website or is it just as he left it?...
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111 Views · 3 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
12/10/17 03:05 PM
Thanks that's helpful advice! I did go on the date and it went well. I had about an hour where my dizziness and balance issues were really bad but took a valium that got me back to baseline (still not good but more tolerable !). I mentioned it in passing without too much detail. ...
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154 Views · 2 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
12/10/17 02:14 PM
I think it's more than appropriate to ask the question. When I met my wife five years ago I had been single for some time and was stable on Remicade. Once I knew that she was the woman I wished to be with I was open with her about my medical history, it's limitations and it's fut...
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154 Views · 2 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
12/10/17 08:23 AM
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95 Views · 0 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
12/10/17 06:37 AM
Hi ccj, Have you visited an ophthalmologist? My left eye has always been a harbinger of systemic inflammation...often just low grade from something like seasonal allergens or temperature fluctuations. My ophtho uses the slit-lamp and decides if a course of prescribed steroid/ant...
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162 Views · 2 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
12/10/17 03:40 AM
Thanks Winston. This is very helpful insight. Tomorrow I am going to sit down and have a talk. I'll definitely be back to let you know how it goes. Best, SNova...
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158 Views · 2 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
12/10/17 01:15 AM
Right now I am on Sulphasalazine and Nabumatone....
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172 Views · 4 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
12/09/17 10:58 PM
The Modified New York Criteria for diagnosing AS requires sacroiliitis grade >2 bilaterally or grade 3-4 unilaterally, in addition to other factors. If you don't have the required damage to your sacroiliac joints, that would be why she hasn't diagnosed you with AS. Many rheum...
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172 Views · 4 Comments
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