Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group newbie- general advise please

Hi, liz:



Rheumatologist is WRONG.
GP is RIGHT; practically the definition of AS in women.
Don't go to this rheumatologist anymore!

Please do not delay in obtaining Carol Sinclair's book and following it both long and faithful enough (10 months--test test test), if salient symptoms do not decrease, THEN there could be some question about the GPs diagnosis (not going to happen).

Can't a GP order the B27 test or is the familial disease related to this antigen? Would be interesting to find out, but whether B27+ or not, You are in the club.

I don't subscribe to alkaline diet, unless it is also highly laxative, however, good to try what works for others within Your immediate family.

If You are really impatient, there is a FASTER way, but it requires a lot of discipline.

Many of us have psoriatic lesions and develop both pustular and scaly psoriasis on occasion, before following diet properly.

In fact, You don't qualify as PreAS (because You are ALREADY FUSED in a very characteristic AS-way), but here is a list I am working on:

I would expand a little, upon Professor Ebringer’s list for Pre-AS so that individuals can help themselves “nuance” a preliminary diagnosis for themselves:


Do You have IBS/digestive issues?
Are the pains asymmetric or symmetrical?
Have You ever had iritis?
Or plantar fasciitis?
Are there X-ray changes to Your SIJs?
Do You awaken with 'morning stiffness' that relents upon hot shower or movement?
Are Your pains cyclic or constant?
Do NSAIDs seem to relieve the pains?
Noisy joints (crepitus)?
Have You ever had some degree of hypermobility?
Any blood relatives been diagnosed with chronic UC, AS, PsA, RA, or any other chronic inflammatory disease?
When You eat, must You drink much more than 'normal' people?
Dry eyes (common conjunctivitis), parched often--thirst?
Any common or intermittent psoriatic lesions--scaly or pustular?
Any 'sausage digits?' Toes?
Pain at the 'core' of Your body so You cannot turn at the waist so easily without feeling like You have a cactus for a spine?
Trouble getting up from a seated position?
Night sweats?
Ribcage pain, especially at sternum?
History of pneumonia?

Even several positive answers cannot be definitive, and it is not likely that anyone with AS will have experienced all of these symptoms, but these are just a few more of the indicators that people can use to determine whether they ‘might’ have AS.

More and more people seem to be HLA B27 negative, yet develop AS. However, fully half of the confirmed AS/B27 negative patients who checked in to the AS Middlesex Clinic, retested as B27 positive, so it is obvious that the inexpensive serological test that is commonly used is terribly flawed, producing way too many false negatives. It is no wonder that even physicians are confused about the meaningfulness of this test. The truth is quite simple, however, if positive it is almost certainly AS (because without indicative symptoms this test would not likely even be performed), but a negative result does not rule out AS.

The problem with Early-AS is that physicians are reluctant to attach this label to their patients, so would rather delay an ‘official’ diagnosis but cannot say exactly that to the patient, leaving them to wonder or find some guy who will surely call the condition fibromyalgia. And the disease progresses without finding any way to delay the permanent skeletal damage; ‘benign neglect.’ I want physicians to instruct their patients how they can participate in their own care enough to avoid the first obvious fusion in AS: SacroIliac Joint bridging, or SIJ fusion.

In addition to the above list, of course, there is the food journal; keeping assiduous track of what we eat over a period we experience flares and sporadic remission, noting our daily pain and stiffness levels. The punchline would have been for me that fried rice meal I had many years ago that resulted in the worst flare I could have imagined up until then. That lasting impression made me stop eating so much fried food, which only helped a little, but noticeably. I don’t know what I would have done, had I known about starches back then, but I am certain I would be much better off today.

Now the opposite of the food journal might be fasting, but most people are as unwilling to fast as they are to give up their starches. But fasting is not nearly as permanent and I did learn of fasting long enough ago to greatly slow the progression for a few years, but laziness and career finally caught up with me. Drastic times call for drastic measures and if a flare is not drastic I do not know what is (for me it was iritis!). The difference is that there was nobody around to tell me that “fasting absolutely reduces AS symptoms,” as I am telling You now. In fact that 20 day long fast put me into a considerable and sustained remission that changed my life and allowed me to become athletic again whereas the wrong food and wrong drugs did the exact opposite. A person should only fast if they can do it safely and it will not require 20 days but only about 6 to demonstrate to the patient two things, once the symptoms disappear or are reduced: 1) They almost certainly have AS, and 2) There is a STRONG connection between food and AS.

I hope that You will experiment with diet and even fasting if You are up for it; as You will certainly discover a world of difference.

HEALTH,
John