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#485971 03/22/13 06:57 PM
Joined: Mar 2013
Posts: 2
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Posts: 2
Hi There,

Does this exist?
ie, someone or a clinic that has evolved through digesting all?(!!) the information-medical & alternative- that has current favor as successful options for someone with AS.

I have returned to this site after many years absentia with a fairly successful remission using Enbrel 50mg injections for last 4 years.
Last year difficult; Enbrel becoming less effective.
Have been diagnosed with AS for past 22 years.

Now I am trying a course of liquid CMO which has seemed to show effect on auto-immune.
Currently in the "Healing Crisis"; been off Enbrel for a month; liver cleanse; cmo; no pain meds.

ANYWAY ..my point here is not the trial I am currently doing but whether there is any professional -individual or association/clinic/- that can take all the the great tips in this website & help an individual to apply them for his/her particular INDIVIDUAL case.
ie a TARGETTED response that can assess my individual case & how successful any one approach may be.

I find it quite daunting to negotiate all the options on this site that may help, let alone contemplate applying some/many that seem to be of benefit.
And, I have done my share...
Purely raw diet for 3 years, Strict NSD for 2, continuing LSD now for 6 years, antibiotic therapy, 2 week radon treatment twice in Austria, various/many cleanses, homeopathic treatment, eichotherm therapy,
Probiotics/oils/ wobenzyme/ and other supplementation. Vioxx, celebrex, ibuprofen etc.

However; finally recanted ( almost ) all alternatives 4 years ago & tried Enbrel which has been amazing..no other pain meds needed.

I appreciate this site enormously & understand that you try to evenly reflect what alternatives are out there & offer this great forum to discuss personal experiences.
When I first found KAS it was a godsend.

I hope you get my point.

All feedback appreciated.

Thank you,



Last edited by bennyspecial; 03/22/13 07:29 PM.
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Posts: 1,046
Iron_AS_Kicker
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This sounds along the lines of a medical startup I read about recently: http://metamed.com/

However I doubt any KA member has commissioned them to do this study yet, as it would be rather expensive.

SJLC #486046 03/24/13 08:35 AM
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Hi SJLC,

Thanks for responding, however that service is not what I meant.
That would surely only be for the very rich to seek what appears to be mainstream focussed help only.

I guess its like this;
I have read many responses which discuss their Rheumy as being "terrible" "OK" "great" as well as other natural doctors, naturopaths, acupuncturists, ayruvedic healers, etc

How to find the best professional help that has digested & understood methodologies from the many suggested/tried/discussed here on KickAS.

Sounds naive perhaps....autoimmune specialists who are identified & somehow rated for choice..worldwide...so that there is a streaming of available data -& patients- to these individuals or organizations so that care is necessarily less myopic.

Again, here on this site there are great resources but it is left to the patient(me...)
to decide what to apply amongst the plethora of good information.
And that is OK..& a GREAT advance over being isolated as a patient without the community(KAS)

I understand there are obvious problems of bias..but there must be a way of finding...AND NETWORKING..these gems to each other..so that information becomes more & more focussed & potent to help with......help.

And perhaps this already exists in some form or other??

Have found "ask a patient" & this gives some idea of rating on different meds.
Probably much more difficult with practitioners...getting qualified ratings that really mean something.

Still; would love some response to this question.

Thank you.

Michael.

Joined: Jan 2010
Posts: 2,105
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Major_AS_Kicker
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My take on this is that there are far too many variables, including those of personality, to make any kind of "rating" or advice about professionals useful. It came clear to me years ago when I was involved in trying to get a "hot and cold doctors" file up and running (an early patient feedback and rating system) and was noting that the very same people who got some of the worst ratings would also get some of the best ratings. Knowledge of AS is really important, keeping up to date, etc, but in some ways that is far less important than finding a doctor who has real empathy with you, who has a passion to find out what is going wrong, and how best to deal with it. They don't need to know or understand all the information right now, they just need to want to find it, and know how to find it. Even the usefulness of having someone who understands AS right now, may not be as useful as someone with an open mind who knows less about AS, and could therefore bring in things that fall outside the usual AS models.

And that leads into what you are really asking, I think, and that is for someone to help you wade through all the very complex options and information that relate to your own case. The answers you get won't be anything like the answers I get for the same questions, so I think its back to my original thought - that what matters most is finding a medical practitioner who has a really strong empathy for you, AND has a passion for getting right to the bottom of everything, asking more questions and doing more research themselves specifically for your case, and offering you the best possible options for you personally.

I've just realised that is exactly what my private rheumatologist is like - only problem is that I need to be seeing them within the NHS to get the full range of treatment options, and they are so far away from where I live that regular face to face appointments are impossible. Oh well.

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Very_Addicted_to_AS_Kickin
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The SAA: http://www.spondylitis.org

has a list of doctors recommended by patients that are members / have a spondyloarthritis.

it is free to members.

I became a member to get that list.

there was one doctor in town on that list.

after stumping a doctor, having another tell me I had fibro instead (i don't), and another saying "not enough evidence of inflammation" (there is), I was very excited to go to this recommended specialist.

He was so patronizing, he made me cry every visit, i had to take my husband with me so i wouldn't get so beat up. he decided there was nothing seriously wrong with me (there is) and then completely brushed me off. told me he couldn't prescribe anything beyond the OTC nsaids because they were all TOO DANGEROUS......I thought if i just stuck it out, when i had a flare again and he saw that, that his view would change. it didn't. it was one of the worst experiences of my life.

and he came highly recommended by others that had been dx'ed with AS, etc.

i tried to get into a practice that many of my other specialists recommended, but couldn't because my GP wouldn't try to get me in there. he said if the other rheumy said that i didn't have an inflammatory arthritis, then i didn't (i do).

fast forward to better experiences.......

upon my reading, my favorite writings on undiff spondy (which seemed to fit me very well) were on webmd and written by a rheumatologist in philadelphia. so when i was well enough to travel, i spent my own money and went down there. figuring if anyone could dx me one way or the other, it would be him. within the first minute or so, he knew i had a spondyloarthritis; then he took the next hour to narrow it down to undiff spondy.

he was kind, smart, thorough, etc. he told me that he thought it took so long for a dx (12 years) because my enthesitis was such an extreme case and thus atypical for someone with spondy. and too with the flaring and then "healing" that if other doctors didn't see me in a flare, they didn't know how bad I was, even though i tried telling them; that what i needed was a doctor who believed me. as he said to me, "why would you make these things up."

he is rated as one of the best doctors in philly. but beyond that and being the one to be asked by webmd to write for them, i don't think he has this world wide reputation. though i think he should.

and with his dx on a piece of paper, i was finally able to get into the good rheumy practice here in town. and my current rheumy is equally awesome in just about every way. and yet, outside of town, i'm sure no one knows who he is.

thus, the one doctor recommended by SAA was a nightmare for me, but the doctors i found through my own searching have been wonderful for me.

i do like the site: ratemds.com
but like with anything, we all seem to have slightly different opinions.

it would be great to have something like what you are suggesting, but its not so simple.

finding a smart and compassionate doctor seems to be the key. someone who can both think broadly and is motivated in helping us.

the rheumy in philly and my current rheumy are like that.

my current rheumy seems to be well read. he seems knowledgeable and open to both modern western medicine (steroids, nsaids, dmards, biologics) and more nontraditional approaches (supplements, LDN, diet, etc). and he allows the two of us to make decisions together. he is truly the more educated advisor that i need. and with me in pain and not always able to make unemotional decisions, he is the one able to see things more rationally than i can at times. he is the right doctor for me. he seems to have that ability that you talk about.

i think a doctor who reads a lot and/or goes to a lot of medical conferences will be most knowledgeable and up to date. my rheumy reads a lot, my gastroenterologist goes to a lot of meetings. both seem to be very knowledgeable on the most recent research.

then too, both are very kind and compassionate and really seem to want to help me. that's important to me as well.

Last edited by Sue22; 03/24/13 01:05 PM.


sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

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