Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Starch Intolerance Website - Now Online!!!

Hi Dow

Thanks for the comments! Sorry I haven't been in touch recently, but as I didn't seem to have AS, felt a bit of a fraud coming on here

However, with my symtoms as bad as ever (even with the cyst removed), I may have to rethink that!

Hope you are keeping well, and are kicking the old AS monster!

Emma.

Thanks Tim! I should retrain as a web designer, love doing stuff like this! Also nice to (hopefully) be able to help other sufferers.

Emma.

Hey Sue!

Hope you are keeping well (or as well as you can be with AS!). I have missed you guys (and gals!), but felt a bit of a fraud coming on here after not being diagnosed with AS. However, as you will see from my previous post, I may have to rethink that!

Take care,
Emma.

Usually DragonSlayer or Molly do the job of taking these fellows to task but they seem to be on hiatus so I guess I'll have to temporarily fill in for them (I usually sit on the fence with this kind of thing). Warning: The following contains opinionated opinions: That guy is a halfwit. No, sorry that's not fair. Calling that guy a halfwit would be be a complement. He is a 1/16th wit. Those symptoms are classic AS. At the very least he should have said that AS is a possibility but there could be other explanations e.g. cyst.


Ah yes, excuse my ignorance. I forgot about the age old medical protocol that if women complain of pain they must be presumed to be lying or insane until an x-ray or blood test can prove conclusively otherwise. I think a round of whack-a-doc is in order - http://spondyville.com/page42whackd2.html (click on the link at the bottom to start the game)

None of that really matters I guess as you either have AS or you don't and there is nothing that an incompetent junior doctor or opinionated forum junkie can do or say to change that. If you do have AS then it seems like you are going the right way about treating it anyway by paying attention to your diet and noticing what causes problems for You (Notice I used a captial Y for You. John would be proud ) If you don't have AS then hopefully one day you can get a proper diagnosis for what's causing your problems. If one day you do decide that you think its likely that you have AS and want to try some of the drug options then your doc who diagnosed AS in the first place may be the best person to see.

Best of luck with it. I hope you can find some answers that help you improve your health.

hey emma,

i know that fraud feeling very well, but it didn't stop me from posting 10,000 posts already!

its so easy after so many doctors try to tell me there is nothing terribly wrong for me to believe it. then i go to another doctor who is outraged that the other doctors are downplaying everything. then i get sent to more doctors, round and round we go, but slowly data gets collected, slowly i find my way to the right doctors.

so, until you know exactly what you have stay! and then after that, regardless of what you have, stay! by then you'll be a friend of people with AS, so you'll have to stay.

my latest data points: LDN seems to help, not completely, but enough that my tendons actually heal up after becoming inflamed. unheard of for the last 10 years prior!

wearing a flector patch almost constantly 24/7 not only gets rid of my SI joint inflammation and pain but the looseness, instability, misalignment, all of it! all of it! well, still twinges of pain, but so so much better! this is a 2 month experiment. and every time i stop the patches for a day, it flares again. so that's another data point. inflammation must be at the root of it.

and prior to that september through january, my SI joint was helped with cortisone, again, wouldn't have helped if not inflammatory.

and today, i'll post more about it, but a colonoscopy found 2 ulcers at the lower end of my small intestine. the gastro doc biopsied it, and biopsied some of my large intestine as well. it will be ironic if they dx my arthritis by dxing my gastro stuff. why they can't just dx the arthritis from the arthritis symptoms has always been beyond me.

but in case the gastro stuff comes back inconclusive, like every thing else. not negative, but inconclusive: the things that show up in the scans are inflammation, arthritis, fluid, tendonitis, other things, but always "low" levels and the blood work, CRP and ESR, borderline, but just below the border rather than just above, as though that's a magic cutoff, rather than saying, well, its not normal, and she does have symptoms. i could see if i had symptoms and those numbers were low, or if i had borderline numbers and no symptoms, but the two together should be a red flag.

well, the evidence is slowly building to a point that pretty soon i think they won't be able to ignore the evidence. so i'm slowly building my case.

and its easier to be patient because the LDN and flector patches have made me functional once again. i was off work (almost completely for 3 months, and then mostly working at home for 3 months due to very bad upper back problems which caused neck, head, chest, rib problems). at least i had the cortisone in my SI at the start of it all so at least that was more comfortable during that time. but so good to be back to functional.

still, i made an appointment (today) for a rheumy in philly who has written papers on the various spondys. i hope he's as good (and kind) as his staff has been. they have been so nice each time i've called: to make the first appointment in the fall and then have to cancel it, then again today. just so much nicer than most of the medical staff i get on the phones up here. i'm hoping that's a good sign.

so, you can see, i'm still putting the pieces together, and yet, still here.

and others, donna is one person who comes to mind, she started having problems at i think 19, and wasn't dx'ed til she was in her 50's i think. may have the details all mixed up. but the bottom line is when seeing others who have suffered for so long without a dx, that gives me patience and resolve.

if you are a member of the women's forum, you can read some of the latest stories about how long it has taken some women to get a dx. if you are not a member of the women's forum, just PM mig and ask her to join.

hope to be seeing more of you lately.

and hope you do feel at least somewhat better after your cyst surgery.

Hi Emma:Nice site,,I started the NSD about 3 yrs ago in ernst.
it tool me about 10 months-1 yrs to really feel the full effects of the NSD.

Now when I veer of course every once in a while,not much of a flare up if I can even say that,but eating starch on a regular basis,is quite painful.

Than back on the strict NSD for a few days and back to what I consider normal now(very low to no pain,with mild stiffness)

I also have Crohns,so dairy doesn't argee with me.
I hav been on Remicade this last 14 Months.
Still without the NSD/LSD I would be worst off,,I have tested this time n time again,,lol

I hav put ur site in my fav's,and will be refering to it on a regular basis.

Thanks a lot for the site/work,and ur help for others to better understand this Disabiling n Painful disease,,

,,,cheers,,,Andy

I think it doesn't help that doctors in the UK beleive that AS afects more men than women. I know that is true, but I don't think that should rule out a diagnosis of AS! Having seen the symptoms you guys suffer from, mine seem to match (even if to a lesser degree). As I said befeore, I don't care what is causing my problems, as long as some one can come up with a cure or at least a way to alleviate it!! I think the main thing that made them decide it wasn't AS is that I didn't have problems with my eyes (I believe this is a main concern with AS sufferers).

All I want is someone to take my pain and symptoms serioulsy, and offer a treatment. I really do think my GP has me down as a hypochondriac If only I could make them feel what I do every day (I know, you all wish that!). I really struggle to wake up in the mornings, and find getting ready for work a major issue. Having had almost a year off in the past (due to AS type symptoms, wrist surgery, and then the removal of the cyst) I can't afford to take any more time off. As a result I am exhausted when I get home!

I will get another appointment with my doctor, and get a bit more aggresive with him! Wish me luck!

Emma. (PS thanks for your comments, I really found them helpful!)

Thanks for putting this site as a favourite! I am slowly finding out more and more, so new stuff will be added regulary. One member mentioned about the intolerance being due to Lectins; having researched this, it seems to make sense! Will add a link soon about lectins.

Regards,
Emma.

Hey Emma

One thing you might want to add to the section about iodine testing, is a great tip that someone gave me here on KA:

When I was trying to test a dark salad dressing, and it seemed impossible to know, because adding iodine to it didn't change the color, as it was already nearly black anyway-

So the suggestion was to add non-starchy liquid milk to it first, until it was a light color, and THEN test it with iodine!

Worked great!

(but tasted terrible! )

(just kidding about that last part )

Whilst eye complications are common in AS, sites like wikipedia and others state that they occur in up to 40% of AS patients, so the majority of AS'ers do not get eye symptoms.

there was a thread on lectins here a while back that has some good links - https://www.kickas.org/ubbthreads/ubbthre...true#Post386161