Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Help - not sure if I really have AS

Hi. I've just joined this site, though it's not clear whether i have AS or not. Wondered if anyone could recognise similar symptoms/experiences. I was told by an ophthalmologist just over two years ago that I had AS but i tested negative for the gene. At that time, i'd had a very severe attack of uveitis along with severe joint pain, abdominal pain and vomiting. I lost about a stone in weight over about a week. no tests were done then. it took six months to see a rheumatologist and a year to see a gastroenterologist. an MRI showed possible inflammation on one side at the base of the pelvis but no other tests have shown anything definite. Before that flare up I'd had a history of digestive problems and had been gluten free for some years. then i started having increasing joint problems, which started with very low back pain and moved into the hips, buttocks etc. Then i started having what i thought were pulled muscles in my shoulders and shoulder blades. I also had a constantly bloated abdomen and lots of discomfort and intermittent pain and nausea. I'd seen the gastroenterologist three weeks before the big flare up and he put me on fibogel 3 times a day, which i suspect contributed in some way - though, not sure how. I wasn't well before the flare up but its been worse since, with only a few weeks here and there when i've been fairly pain free. i have constant joint pain and abdominal pain and am always tired. i'm tempted to try the low starch diet but since i don't have the gene and i'm not even sure what is going on, i'm finding it hard to get going - also i love bread (even gluten free), rice and spuds. it all seems a bit daunting. On the other hand, i'm miserable. my life has whittled down to working and then trying to rest and nobody is offering any solutions or explanations. Sorry to go on but if anyone has had similar problems, especially with more vague symptoms and getting a diagnosis, i'd really like to hear about it. I should say that I'm a middle aged woman - so, wrong gender and age as well for AS. Also, does anyone get indented and pitted my nails when symptoms bad - it was very noticeable on thumb nails after the worst flare up. If anyone is able to shed any light, i'd be really grateful as i feel a bit like I'm going nuts at the mo :-)

I'm female, 47 HLA B27 negative and I have AS. I was diagnosed at 46.
The whole myth of it being a "male" disease is slowly being proven false. It used to be diagnosed at 9-1 now it's down to 2/3-1
Women, unsurprisingly to most of humanity but shockingly for doctors, present differently than men.
I've spent the years of being told that it's tied to my menses or vague "female issues" or it's all in my head, etc.
Western medicine does not look at the whole person so symptoms get looked at by one specialist and ignored by another-it's about the stupidest way of treating humans that could ever be devised.
I've taken to listing ALL my symptoms and handing the same list to every doctor I see-GP, Rheumy, Ortho, ENT
It helps to remind them I'm more than a part of a human.

How well do you respond to NSAIDs?

WELCOME, paulinem:



And welcome to the club! That about does it, for me but You can check out my "Important AS Resources" link in signature below for help in nuancing a diagnosis.

THE NSD IS AS EFFECTIVE FOR B27 NEGATIVE PATIENTS AS FOR POSITIVE! AS is still AS--molecular mimicry works its ugliness upon everyone with this disease.

Perhaps if Fybogel is starchy, it very much contributed to Your current issues: Test with iodine if unsure; this is the kind of product that could really cause trouble!

HEALTH,
John

I'm 45, a woman, and started with uveitis and stomach and joint problems, like you. It sounds very much as though you are part of the spondylitis family. Glad you found us here and hope you are feeling as though you are very welcome, and can get a lot of support! Welcome!

Thanks Pezami, John and Naj. It's a relief to hear your comments, even though I'd rather I didn't have this thing, nor you either, for that matter. it's such a weird insidious condition. i'd never heard of AS or uveitis before the big flare up.

I can totally relate to what you say, Pezami. I've been checked for various 'female' problems, it's been a long series of symptoms just looked at individually - no big picture at all.

i haven't been able to stay long on NSAIDs due to chronic gastritis (confirmed by endoscope several years ago) and, judging by symptoms, further down the tract as well. Steroids are also a problem as they cause pressure to build in my eyes. My rheumatologist isn't interested in gut problems, the gastroent isn't interested in joint problems. the only person who has taken a broad view and who made the diagnosis is the ophthalmologist. my gps are clueless. I feel too disheartened (not to mention sick, sore and tired!)at the moment to push any of them so i don't know if i'll ever get a confirmed diagnosis, unless i deteriorate physically. Hopefully I'll be able to stick to the low starch diet though and that won't happen. Thanks, John for that information.

This site is amazing and just reading some of the other posts, i can see that I'm lucky compared to what some people go through with AS. Are you all on the diet and has it really made a difference for you? How quickly did it work for you? Are most people on this site on it? Have you head of LDN? Has anyone had any luck with that?

Sorry for all the questions - i'm not 100% sure how these forums work or when a thread should end. in any case, thanks again for coming back to me and for the information. it has really helped.

Pauline

I forgot to mention the nail issue-see the doctor when it's happening or at least take photos if you won't be seeing the doctor for quite some time.
It is common in psoriasis and psoriatic arthritis (Google it)
It's in the same family as AS and the treatments are basically the same -so who cares what it ends up being called as long as it's getting treated and you find some relief
I've had/have the same issue and it helped with directing the rheumy to my diagnosis

Thanks again Pezami. That makes sense - i get psoriasis on my scalp, neck and face - mostly when i eat hard cheeses (sadly). meant to say as well, i'm going to follow your idea of drawing up a list and just handing it over to whatever doctor i'm being seen by - that's a great idea.

Hello, Pauline:

NSD will clear up psoriasis in short order; cannot understand the cheese connection but we are each unique. To kick off the NSD, I very much recommend either fasting or The Edgar Cayce Three Day Apple Diet (it is that time of year, here).

I have been making pine tar soap; it helps the lesions to some extent.

HEALTH,
John

I could write pages so I'll try to keep it as short as possible.

I've been dx'ed with undifferentiated spondyloarthropathy because

I have gastritis (detected by endoscopy, obvious due to the pain),

inflammation and crohn's like ulcers in my ileum (have a colonoscopy if you haven't already),

a lower case of psoriasis,

a very bad case of enthesitis (i was tearing tendons and ligaments along with all the tendonitises and "pulled" muscles or tendons - LDN helped that a lot, but that's the main thing LDN did for me, but that was huge to stop tearing tendons and ligaments, some serious enough to take a year or more to be able to use again),

SI joint inflammation (that's a big one! a flector patch over my SI joint daily, changed twice a day helps a lot)

neck problems (oh boy that's a book in itself)

flares (that's typical of autoimmune / autoinflammatory diseases)


I've had chronic constipation on and off since I was before I started school, lots of prune juice, learned to manage it in my teens and 20s. Then the gastritis and diarrhea with undigested food and weight loss at age 29-30, finally started getting it under control after a few years. Then the arthritis started at age 35. Then the GI stuff came back moreso and then had both arthritis and GI stuff to contend with. 5 rheumatologists and 12 years to get diagnosed and treated for the arthritis. Was always fortunate to have outstanding GI docs so was managing those symptoms. It was actually my GI doc who was trying to get me a dx of crohns as he knew about the arthritis and knew the two went together; not sure he knew one could have the GI inflammation but not IBD and have the arthritis, but his dx of inflammation of the ileum was a major piece in getting me a dx.

I finally flew down to philadelphia to see dr lawrence brent to get dx'ed. I had read his papers on AS vs undiff spondy and felt he was the expert on the latter and if anyone could tell me yay or nay it would be him. Within the first few minutes of our visit, he told me that clearly I had a spondyloarthropathy. Then we spent the next hour trying to determine which one. That's when we came up with undiff spondy, as I have all those overlapping symptoms.

Before him, not one of those other 4 rheumies asked me a thing about my GI symptoms. I didn't know to tell them back then. I can't believe how they couldn't ask me about that. Though once I knew what I had and told one about my GI symptoms, he still couldn't connect the dots.

I'm HLA B27 negative. My CRP and ESR were always within normal. Though my high sensitivity CRP came up 3 times above normal just recently and I'm on Humira and had just been on prednisone, so maybe that's a better test, or maybe it shows I'm flaring. My GP was concerned about all that inflammation.

You asked about diet. I'm allergic / sensitive to not gluten, but rather dairy. Staying away from dairy has helped. It has helped my gastritis and constipation the most. Maybe it just takes time to heal a leaky gut.

Steroids have helped me. Humira is helping me. A lot for both.
Aleve helps, but due to the gastritis and edema it gives me, its only for a few days.

I don't get uveitis but I do get dry eyes when I flare.

I also can get a bad itchy rash on my legs and tops of my feet when I flare bad that isn't psoriasis but rather "generic typical autoimmune response" as my rheumy states it.

I think its a shame that so many rheumies don't ask about GI inflammation and most don't recognize it unless its IBD. I think its a shame that so many rheumies don't understand flaring.

OK been interrupted a few times writing this now, so while it started off on track, now I can't remember what I have and haven't said, so I'll end here.

Mostly sharing to show, "Yeh, sounds real familiar"

Don't give up though, just keep searching for a rheumy and GI doc that get it.

Thanks John,

I'm lucky that the psoriasis is mild and intermittent but I'd like to get rid of it completely. Don't know if I could manage the apple diet but it's another option to have, if necessary, especially with the gut and joint issues. I'll look up pine tar soap on the internet.

best wishes