Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group So I decided enough was enough and went to the GP

That is EXACTLY what my GP said. I'm in my 50's and have had stuff going on since teenage. My SI xray showed "minimal sclerosis" and GP said it was totally irrelevant.

Bleurgh!

I suppose at least having had the xray and seen that, you know what it means. But would be good if the doctor did too!

Just got my appointment letter through. I looks really good actually, it's called the musculoskeletal triage service. So they can see people within a few weeks, minor/ short term things can be handled by the specialist GP (insoles, injection for your bad elbow etc) or they can refer to hopefully the right person. Better than waiting months to see someone only to be told you need to wait months to see someone else, or alternatively, being fobbed off by your average ill-informed regular GP.

And it says you get a 30min appointment with time to "be listened to and involved in decision making". Music to my ears!

I'll call on Monday and book my appointment, after I've had my bloods taken and checked with the nurse how long it will take to get the results. I am also hoping to be able to call the GPs and get the results when they come in, so I have some idea what to expect.

Wow! that sounds like a great clinic! I know there are some areas that are doing really good stuff with initial clinic appointments, including places where you stay several hours and get seen by a number of different people in the team and get all the tests and xrays and stuff done on the spot (not rheumatology necessarily, but other specialist services). Just wish they would roll out that kind of programme elsewhere.

I wish you all the best for it. Do take someone else along with you though if you possibly can who knows you well (partner, friend, mother, etc). It does make all the difference to have another pair of ears as well as someone who can remind you to say important things.

for years, tried to focus on the gastritis and downplay the IBS as back when those started, IBS was still seen as a nervous condition.

fast forward to now. find yourself a good GI doc. one who will do a colonoscopy up to the ileum to look for inflammation and ulceration. you may even have the beginnings of IBD and a colonoscopy would detect that. at the least, you probably have inflammation in your intestines, most likely in the ileum. i've read several times recently that all spondys have this inflammation even if they are GI symptom free. if you have inflammation in your intestine, that can help with a dx of spondy. and can be treated.

also see if you can find a naturpath who will do stool sample testing to see if you are missing any of your good bacteria, if you have bad bacteria or candida, etc in your stools. i was found to be lacking lactobacillus and so my naturpath and GI doc put me on probiotics. has helped the IBS a lot.

my rheumy thinks all spondys start in the gut. he (and i) believe in leaky gut. the idea that the bad bacteria are outcompeting the good bacteria. allowing for inflammation of the gut, allowing for it to become "leaky". allowing for food allergens to pass through to the blood stream. allowing the body to elicit an immune response and produce inflammation (in our joints, etc). my naturpath also had me get blood work done to analyze for food sensitivities and apparently (cow's) milk casein and egg (protein) cause me problems, so i stay away from them as much as possible. no more 3 cheese omelets for me!



SI joints seem to be a common problem with spondys. and when i've had my worst flares, i've had a horrible rash on my legs as well. my rheumies have said its typical of "autoimmune" responses. my hands were my first problem, along with my upper back. then the SI joint 2 years later. as you said, could be reactive arthritis, but could be an initial flare of any of the spondys. i have a friend who had reactive arthritis to a misdiagnosed strep infection, but was treated quickly and resolved itself.



tell me about it!



i have bone spurs in the facet joints of the left side of my neck. when i flare, that area becomes inflamed (like the rest of my joints) and causes even more nerve compression than what happens day to day. causes the upper back and neck muscles to spasm something terrible. always low level spasms due to this problem. ice and heat help. PT and chiro help. ultrasound helps. zanaflex helps. stretching helps. walking helps. sleeping on my back with a thin feather pillow squished under my neck helps. sitting hurts. not sitting helps. sitting only on flat chairs, my swopping chair, in my recliner, helps.

Thanks for all that info . I think there is zero chance of a GI doctor or colonoscopy since I don't really have significant GI issues now I am off gluten. I mean, I have enough to know it's still not quite right, but not enough to have testing on the NHS.

I agree totally about the gut and I know that gluten has played a role in my illness. I don't know what came first but going off gluten helped a lot, though then the joint pains started to gradually worsen again, although the other symptoms (eg wheezing, GI stuff, restless legs etc) has mostly stayed away. Interesting that Carol Sinclair much improved for a while after going off gluten but keeping in other starches, and then worsened again and had to cut all starches. My experience was just the same.

I have done a lot of stuff for gut healing- glutamine, probiotics, bone broth, ferments etc, will keep at it.

Reading up on autoimmune rashes, the leg rash does sound more likely to be that than to have been a virus, with it being localised like that. I will make sure I mention it. I am not certain I have AS but I am certain I have something autoimmune going on, and certain it's not fibro.

i thought the same thing about my IBS and for years just focussed on the gastritis with the GI docs, only casually mentioning the IBS. turns out they were as concerned about that as the gastritis. and most of the time its under control. so you never know, if you find a good doctor, i think he / she will care.

but, another tactic, around here (in the U.S.), they want us to have fairly routine colonoscopies: more as we get older, more if one has IBS or other types of bowel issues. so i'll ask, could it be time for a "routine" colonoscopy? then if it is, maybe you could convince a doctor to make sure he / she goes all the way up to the ileum, which may not be routine, but while they're in there (and you've done the not so nice prep), why not!

on the other hand, if you've managed to figure out how to manage it, as i had mine for many many years, then like i did, you could just continue that way. i only had to get more serious and involve the doctors because what i had been doing that worked, stopped working. but for me the secret was to add in the probiotics, and i see you are already doing that.

on the other hand, if you need the GI piece of the puzzle for diagnostic reasons, then i'd try to push the "routine" colonoscopy angle. but that's just me.

as for the rash: as i found out from the dermatologist, that type of rash can be from many causes: everything from allergies to autoimmune. he even did a puncture biopsy and it came back inconclusive as an "exuberant immune response", which means either allergies or autoimmune. but because it was at the start of a bad flare, was joined by dry eyes, and inflammatory joint issues, and i hadn't been exposed to anything new (i even resorted to switching to just hypoallergenic dove soap and pure aloe on my legs, they thought autoimmune, not allergies. especially since over the years its always the same pattern (start of a flare). but, a bacterial infection like strep can cause the same thing too. so, its not so much the rash that determines the cause, but rather the rest of the puzzle pieces as well. for me, its just one more piece. just like dry eyes can be due to a number of causes, but for me, its another puzzle piece.

looks like you're putting your puzzle pieces in place and more importantly figuring out how to help yourself.

you'll find a doctor who understands what is going on. it took me 5 rheumies and a dozen years, but finally it happened for even me, with not such classic symptoms, or at least not symptoms that most doctors could recognize. but good doctors that specialize in the spondys understand undiff spondy, AS,and the other spondys.

Thanks, that's interesting. I definately don't think there is such a thing as a routine colonoscopy in the UK lol.

It worries me when people talk about needing to see several different docs before getting a sensible one. I'll just have to see whoever I am referred to, and then that'll be it. Will just have to cross my fingers!

Got my blood taken this morning, was great, I have terrible veins so am used to lots of poking and prodding, failed attempts, other people being called in to have a go etc etc lol. It was my favourite phlebotomist, first try .

Also just had a phonecall from the musculoskeletal triage people, my appointment is Feb 7th .

I think this is the doctor I am seeing lol http://www.therhinos.co.uk/rugby/coaches/15513.php

that may actually be a good thing

from my (limited) experience, doctors used to working with athletes seem to have a good understanding of what is "normal" and what is "atypical" in terms of "healing". its been these types of doctors who pushed me to continue going from rheumy to rheumy until i found one who also understood; for me, my tendons should not have been damaged so much so easily and taken so long to heal, it was outside the range of "normal" and it was these doctors who knew that by comparing me to most other people. the only other step was to rule out EDS (rare collagen disorder) and that was easy since i'm not the least bit hypermobile in the EDS sense.

good luck with the appointment.