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an0thermike #495012 09/17/13 03:29 PM
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Hello Mike,

You have replied to several posts with comments>
- "Hey, that's how I feel"
- "and in my experience"
- "I'm saying this becuase of my personal experience"

That is all based on sample size of 1 AS sufferer. There are many more AS sufferers here posting that have their own personal experience and stories with AS as well.

I believe this comment>

Quote:
If you don't consider biologics well either your disease is not that bad, you don't really have AS, or you must really like to suffer.


< to be lacking of any kind of empathy towards all the posters here with their own personal history of AS. You have not walked in their shoes nor lived their life. You can not judge accurately if their pain is more/less than yours.

The comment just prior to the one above is equally lacking in empathy to anyone here that posts and found relief with diet. You have diminished their pain as well.

Regarding your comment>
Quote:
Anyway, this is a support group, or so I thought.


You are correct this is a support group, but if there was no consideration for the other posters and their experiences, I believe it would stop being a support group very quickly.

Regards,

Tim


AS may win some battles, but I will win the war.

KONK - Keep ON Kicking
Dotyisle #495020 09/17/13 05:27 PM
Joined: Aug 2012
Posts: 184
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Dotyisle,

Unfortunately, since this is a support group, you're gonna get some personal responses. If people don't care to hear personal responses then I'm not sure why anyone would join a support group in the first place. I don't think we come here to just post and read studies all day.

I understand my comment could have been seen as sort of abrasive, and I apologize for that. I know no one likes to suffer, so that was wrong of me to say. However, I read on these forums all the time about people who are doing diet for months and months and months and they still feel terrible. I've been extremely strict on the diet for roughly 14 months now and it's still done absolutely nothing for me. I'm still doing it just because I have some crazy hope that it could work in the future. But I know that's the desperation talking. I know this diet is never going to do anything for my pain. So when I see people on this diet suffering for months and months, it does make me a little angry that they're not considering medication, which could really help them. I know it's their own bodies, but I feel bad for them. Thats empathy.


nenadu,

You've clearly already made up your mind on this, so it's useless for us to keep posting when you keep dismissing everything we say. You're definitely entitled to your own opinion, but please don't try to minimize what we're saying. I'm sure no one here is trying to decieve you. We have no vested interest in getting you to try medication.

At this point I think its pretty clear that this thread is going nowhere fast and I really think locking it might be a good idea so we can all just move on.

Last edited by an0thermike; 09/17/13 05:30 PM.

Mike / 35yo / HLA-B27+ / diagnosed with AS march 2012 / Dermatographic Urticaria since 2017
FODMAP diet, Enbrel, Meloxicam, Tramadol PRN, Xolair for chronic hives.
mig #495052 09/17/13 11:41 PM
Joined: Oct 2012
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Originally Posted By: mig

Ankylosis involving the posterior elements of C2--C4 vertebral bodies and narrowing of the facet joints throughout the cervical spine, with normal alignment.


Does "ankylosis" mean full fusion?

Wilhelm #495065 09/18/13 09:16 AM
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Unfortunately yes, ankylosis is fusion. And I hoped that someone will know if fusing in early stages, when it is still ossification of ligaments maybe may be reverted.

nenadu73 #495073 09/18/13 03:29 PM
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Originally Posted By: nenadu73
Unfortunately yes, ankylosis is fusion. And I hoped that someone will know if fusing in early stages, when it is still ossification of ligaments maybe may be reverted.
Originally Posted By: nenadu73
...I am against experiments on people as MD.
As an MD, you would know that fusion is not reversible. Ossification is the process of laying down new bone material prior to actual fusion. There is very little scientific evidence that reversal of this process is possible. There are a few alternative sites that claim that reversal is possible, but they do not have scientific evidence to support their claims. Physician's normally have access to the scientific and medical literature that would answer your questions.

Stormy #495082 09/18/13 08:15 PM
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Stormy give me a break!
As MD I have learned that disabilitating in AS is very rare but...
As MD I have learn that good therapy for AS are NSAIDs but...
If you are still interested for such malicious way of comunication I offer you possibility to read this link and then I will accept your appology.
http://www.ncbi.nlm.nih.gov/m/pubmed/22909092/

nenadu73 #495089 09/18/13 10:47 PM
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Originally Posted By: nenadu73

If you are still interested for such malicious way of comunication I offer you possibility to read this link and then I will accept your appology.
http://www.ncbi.nlm.nih.gov/m/pubmed/22909092/

I have absolutely NO reason to apologize to you. The VAST majority of the malicious communication on this thread has originated from you. Several people have tried to convey accurate information to you which you have refused to accept as accurate because it does not conform to what you want to hear. As I said:
Originally Posted By: Stormy
There is very little scientific evidence that reversal of this process is possible.
The alternative sites that I mentioned make all kinds of claims about reversal of fusion with supplements, diets, and herbal remedies. There is absolutely NO scientific evidence to support the alternative sites' claims. There is some - but little - mention of reversal of ossification in the scientific literature. Not enough to be called evidence. The link you posted is to a singular case study of a patient with leukemia and AS who had an apparent "spontaneous regression of syndesmophyte development" after stem cell transplantation, total body irradiation and immunosuporessive therapy. This combination is far more experimental, untested, and potentially dangerous than medications that have been tested extensively, approved by many different countries and used by a very large number of people. As noted in the case report: "To the best of our knowledge, this is the first case report presenting the partial radiologic regression of syndesmophytes." If you are an MD, you know full well that a singular case report is not considered scientific evidence. Since English is apparently not your first language, I will forgive the obvious misunderstandings and miscommunications on your part. Have a nice day.

nenadu73 #495091 09/18/13 11:04 PM
Joined: Feb 2011
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Boys, boys boys, this is not a peeing contest. This thread needs to stop. It is not helpful to this support group.


Pea
Diagnosed with A.S. 29 year's ago.
Diagnosed with Fibro 10 year's ago.
Remicade, Intrathecal Pain Pump 2013
Stormy #495099 09/19/13 02:51 AM
Joined: Oct 2008
Posts: 360
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There are 2 new pathways and drugs that will halt the bone making process down the road in AS. They know the pathways and think are already experimenting with the therapeutic targets.

That stem cell article was only 1 report but very intriguing. I think there is another one that said it progressed their AS. I also heard something somewhere from one the stem cell doctors or one of the doctors from NW that do not recommend that treatment for this disease for some reason(bet there's a reason why). Bet the chemotherapy causes significant progression/inflammation.

Also had a doctor from the cleveland clinic tell me once someone has AS they fuse right away. You couldn't trust anything that doctor said though and he was probably referring to someone who already had some fusion going on already.

Also NSAIDs are bad for most people with AS I assume. They can be a red herring because they work at first and can relive pain but I'd be careful with them down the road...

Last edited by Tnate; 09/19/13 03:03 AM.
Stormy #495103 09/19/13 08:29 AM
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Quote:
The VAST majority of the malicious communication on this thread has originated from you. Several people have tried to convey accurate information to you which you have refused to accept as accurate because it does not conform to what you want to hear.

Malicious conversation is argumented questioning about biologics? Accurate information? If you red whole conversation You have been able to see who was very rude but obviously it is fine for you as you find my posts malicious.
Quote:
There is some - but little - mention of reversal of ossification in the scientific literature. Not enough to be called evidence. The link you posted is to a singular case study of a patient with leukemia and AS who had an apparent "spontaneous regression of syndesmophyte development" after stem cell transplantation, total body irradiation and immunosuporessive therapy

If you spent more time and carefuly read my posts, instead of investigating my MD title, you might notice that topic was in direction to disccus case studies as I pretty well know that there are no longtime studies with great number of patients to confirm regression of fusion.
Quote:
This combination is far more experimental, untested, and potentially dangerous than medications that have been tested extensively, approved by many different countries and used by a very large number of people.

Who compared these two things?
Quote:
Since English is apparently not your first language, I will forgive the obvious misunderstandings and miscommunications on your part.

Thank you for such generosity you have showen, I hope besides that you will work on your manners with same passion.
It would be nice to know what is your profession and also are you on NSD, do you use biologics e.t.c.?

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