Hi everyone. I was refered to this site from a member of a completely unrelated site and so happy I am here.
I have been reading through some topics here, both last night and today and it has actualy helped me feel a little better.
I will try to keep this short but sorry if I can't.

Ok here I go.
I am a 30yr old lady and only 2 days ago was diagnosed with AS.
I am realy struggling with the pain right now. I had to go to hopistal last night and they gave me morphine wich made me very sick.
Some past medical history. What is related to AS and what is not I dont know. I though you all may be able to help me with this.
As a young child I was diagnosed with osgoodschlatters disease in my knees. This is an inflamatory disease.
I then developed arthritis in my knees. I also have a lot of problems with my hips and my right hip often dislocates.
during my teenage yrs I had numerous joint problems and back pain. At the time I out this down to being an athlete and living on the farm. I also spent a large amount of time each yr in hospital with croup an inflamation of the airway. I have endometriosis(sp) I had 5 miscarrages but have 3 beautiful kids. When pregnant with my eldest daughter I had toximia and almost died. Then with my youngest I had symphis pubis disfunction, an inflamation of the pelvis. And 3 weeks after she was born I had to have my apendix removed.

In 2002 I was diagnosed with disc disease in my back, arthritis, 2 curvatues of the spine and a tilt complex.
I have been on pain meds and antiiflamatories ever since with times that flare up realy bad.
I have IBS, reflux and other stomac problems from all the medications. I now take somac for this.
Last year I had to see a cardiologist as I have developed heart pulpitations and have quite low blood pressure.
And I have tarigiums on my eyes and get very red and swollen eyes that are sensitive to light.

I recently had another CT scan and found numerous problems with the discs in my lower back and now also my upper back. I have stenosis and lesthesis in the s1 area.
For the last few days I have been in extreme pain. In my lower back, mid to upper back, left shoulder, neck, knees and legs. And my chest aches so bad. After seeing my ct scan my doctor sent me for blood tests and then 2 days ago confirmed the diagnosis of AS.
I have been doing a lot of research in the past 2 days and I guess what I am experiencing now is a "flare up" I don't know what of the medical problems I have are contributed or caused from AS.
All I know is I am in so much pain and just cant take it any longer. I try to sleep and think if I die in my sleep it will be good. But I cant get to sleep I have had insomnia since I was about 14. Even when I do get to sleep, I wake up from the pain.
Sorry to bore you with all this. I am just so lost and so sick of this pain.

Back, shoulder, chest, neck are very common AS pains, and I heard of other people with knee involvement as well, but WOW that sounds like an awful flare!!!

I know my inflammation is bad when I can't sleep, but you might have as much inflammation going as my friend who has a serious case of lupus.

In the long run the NSAIDs do cause additional illnesses that contribute to your inflammation, but you could use something strong to get inflammation down before worrying about that. Maybe a blast of prednisone or something, which also causes lots of damage in long-term use but can help for a short term. Hopefully your doctor will help you get out of this flare -- at least he got you a diagnosis which is a huge start.

I'm starting to forget how bad the pain used to be, now that mine is less flared up, which has happened gradually after getting diagnosed a couple years ago. At first I did NSAID but stopped several months ago when I noticed heartburn starting up; now I'm on another type of anti-inflammatory ("5-loxin" boswellia) and switched to the low-starch diet. Recently the only time I flare badly enough to have problems sleeping is after I goof on my diet. Hope that's inspiring, things can start getting better now that you've been diagnosed...

Hello aussiegirl,
Welcome to kickas.org. I hope you will like it here as much as the rest of us do. I'm not sure to what to say about your conditions, but I can say I have multiple conditions too, some of which might match yours a little. I have A-Fib, a heart rhythm disorder, born with some scoliosis (it's not very apparent though), and I have some stenosis and bulging disks (but in my case they came after the fusing processes got well under way).

You might want to have a ophthalmologist have a look at your eyes to make sure you aren't having iritis or uveitis problems.

You have come to the right place. Have a look around and you will see that there are alot of treatment options discussed here, including meds, alternatives, and even a diet that works for a lot of people here. The diet is called the No Starch Diet, or NSD for short.

Take care,
James

hi and welcome, No Starch Diet is working for me..most of my pills got flushed down the toilet. It might work for you if you can be strict to begin with.gl https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=101430#Post101430

Thanks for the replies.
I saw the Doctor this afternoon and he has put me on oxycodone for the pain and Prednisone starting on 6 tabs for 2 days and then decrease every 2 days. I have had prednisone on and off for yrs.
Doc also prescribed hydrocortisone ointment for my eye.
I already feel a lot better than I did earlier today.

James, I have been on a low starch diet for a while now it seams to help with my IBS also aviod processed meats as they tend to upset me also. And try to not have sugar.
From what I have read here, this is a wonderful site and thanks again for the replies.

Hi again,
I have problems with extra sugars and dairy too. If something is high in total sugars, I can expect pain to come along in a short time. Any more than a single serving of dairy starts fighting me back too. I saw your other post a minute ago. It's good to see you diving right into this forum. Good to know.

Personally, I have trouble staying on the NSD diet, but if I think if it might help someone, I will try to mention it.

Take care,
James

Hi Aussiegirl,

Welcome to KickAS. The sad thing is that when someone finds KA, it's usually because they're suffering and in pain so it's hard to say "I'm glad you're here". At the same time, given this is what you are experiencing, then I'm truly glad you're here because this is such a supportive place.

I'm glad to hear your doc has given you something strong for the pain and something like prednisone to bring down the inflammation while you find a treatment that will work for you. I spent several months last year on fentanyl patches for pain management plus oxycodone for breakthrough pain. I was trying to avoid prednisone but, in the end, gave in and went back on it and was very relieved that I did because I got rapid relief.

From your post in the other thread, it sounds as though you've been giving NSD a good try. What meds have you tried? You mention prednisone but now you have a diagnosis, you may be offered sulphasalazine, methotrexate, various biologics etc. Most people agree that regular NSAIDS are too dangerous to your intestinal system. I take celebrex which is less damaging and also take rabeprazole for GERD (reflux). I have rheumatoid arthritis, rather than AS, but they're pretty similar. I've been taking methotrexate for a while but it doesn't seem to be working yet.

You'll find lots of ideas and experiences on the site as you browse. If you feel you have women's issues to deal with as well, there is a women's forum but you will have to apply for access to it as it is highly confidential and not accessible by non-members. If you are interested in that, send a message to Mig. You can send private messages through the "My Stuff" menu.

The best of luck - I hope you begin to experience some real improvement soon and find a treatment that will give you back your quality of life.

Just noticed, Aussie Girl, that you are privileged to be member # 7000! Hopefully, that's a good sign and KickAS will bring you lots of luck and postive changes in your life.

Hi Wendy,
I have been on so many over the years to treat the varried medical problems and for my back. The latest one was naproxin from memory. I have been on Tramadol 200mg for the past 8yrs but it does nothing for the pain and only upsets my tummy so I stopped taking it. I was meant to be having a historectomy (sp) in a couple of months but I dont know if they will go ahead with it now.

That has to be a good thing.

Just wanted to hear your opinions on something if you dont mind.
I was talking to my doctor today about getting a disability parking permit.
I am just not sure as when I am ok I can walk not too bad and have even been pushing myself to keep going on patrol. I am a lifesaver at the beach but have just taken medical leave as its gotten too much for me.
But when this flares up like this I can hardly walk at all and just walking from my car to the doctors office today nearly killed me.
Do you think it would be fair of me to get the dissability parking permit and only use it on my bad days or is this wrong?

I have a disability parking pass and that's exactly what I do with it. I use it when I need to and not when I don't. I think it's quite appropriate. Good for you.
Think of all the things you can't do - maybe at least you'll have the privilege of decent parking. Yeah!

Yeah thanks for that. I just feel guilty as you see others worse off than you, especialy where I live as it is like a retirement Island LOL. Think I will get it, not sure how much I will use it though as to look at me you cant see the dissability except when I walk sometimes

I agree with Wendy. This is how I use my H-parking card too. You don't have to feel guilty for using it, if you need it you need it. On they days you don't use it, people will appreciate you much more for not using it on the days you don't really need it. That makes you a good samaritan(sp?).

There is handicapped parking where I live too, and I have never used it because some of my neighbors are wheelchair bound. I will have to use it elsewhere sometimes though, because some days I just can't walk well, or still need to use my wheelchair from when I injured my back.

Take care,
James

I couldnt leave this at post #13 lol
Forgot to mention the pain I had this afternoon was more in my jaw and neck. Wondered why I was waking up and finding it hard to open my mouth. Is this something associated with AS?

Also my 11yr old boy has osgoodschlatters in his knees and some inflamatory disease I cant remember the name of, in his heels, some days he cant walk. Do you think he should be tested for the AS gene thingy or leave it for now? He has just recently about 3 weeks ago complained about his back hurting also but he did injure his back quite bad last year. Well another kid injured him grr
What do you think?

Sorry for asking so many questions.

Hi aussiegirl,
Welcome to KA, Yes the jaw and neck are part of this wonderfull AS Ive been going through a lot of trouble with my jaw the last few weeks have trouble opening my mouth in mornings and painfull to eat.I have severe cervical kyphosis and nearly fused neck.

Kevin

Thanks for that kevin. Just wonderful.
Sorry to hear about your neck. When I had my CT scan the other week they refused to do it of my neck even though my doc asked for it as they were worried about radiation with my age and having kids. grrr tried to tell them I am having a historectomy (no more kids) but they didnt listen so I have no idea what my neck is doing other than symptoms.

All the time you can move your neck do even if it hurts once its fused thats it. You might be lucky because women present different from men you might not get neck problems but at your early stage keep active as you can. Ive been suffering 48years and if I had known about stretching and laying flat on the floor then I might not be as bad as I am.Use it dont loose it.

Kevin

Welcome to our KA family aussiegirl. You shure have a hell of a lot going on there. Real glad you found us and congrats, number 7 - should one say 'come in number 7!'

Yes, jaw stuff goes right along with AS. We've just been touching on that very issue in another thread over the past few days. Kevin posted that he was having problems with his jaw. There are several posts on the topic.

BTW, admin have put in a terrific search engine here. See top of page, *search*. Hit that, and down drops the box to type in your search word/topic etc. Hit that, then up comes all the posts relative to that search, going back over several years as well!

Now. For your son. Perhaps it was Planta Facitiis with bone spur and achilles tendonitis that your doctor mentioned? Yes. That is another AS problem/s. Connective tendons. Would suggest your son sees a good rheumatologist and gets checked out. Then will be in a position to deal with the problem right on, instead of guessing in the dark.

One tip. Quite diff to follow. When attending a doctor appt, make a list of three main topics you want to discuss. Write down the answers and never hold back in asking the doc for clarification on anything including asking them to repeat whatever it is. They will never take offence at that (might make em feel 'big' and god like, but preferably and more likely to, make em feel compassionate...'smile'.)

Go well hon - and take care.

Molly C (France)
Keeping on Keeping on (as we do)

Thanks Molly
And yes that sounds like what my son has. He has heel spurs and achillies problems and the heel bone is inflamed. He is stressing about it as he overheard me talking to my mum about it when I thought he was asleep. I set up regular chats with the school councillor for him incase he feels more comfortable talking to someone else.

I saw that tip on some site the other night. Thanks I will use it. My doc is great actualy. he writes down most stuff in my notes and then photo copies then for me. He has also said it is ok for me to bring a recorder in when I see him to make it easier for both of us.

Will def check out the search thing. thanks. I feels like all I have been doing is reading. LOL

Hi again aussiegirl - see our Keving has responded (morning Keving). Radiation of CT scan. Radiologist was correct in not doing the neck. A CT scan is equivelant to 120 X-Rays. Medics and radiologists are 'now' being careful in using CT scans. Better is to have an MRI Saggital STIR imaging done. NO radiation. But, does need to be the Saggital STIR imaging as oppoosed to straight MRI - S'S shows up a deal ore. Other than that, is the Nuclear Bobe Scan. That is great for showing up inflammation, but, does require rad exposure... In other words, steer well clear of CT scans. There are always other options.

So you are undergong a hysterectomy. Will they leave ovarian tissue for hormones? There is a good endometrious website and group - and the topic has been discussed here on the boards as well. You can put in a search. The 'big man' for endo is Prof Ivo Brosens, Leuven, Belgium. Fanatastic and compassionate gynae. He has made all the breakthroughs in dealing *with endometriosis - Emeritas Prof Brosens is an international figure, recognised world wide in/for his treatment of endometriosis.

Go well me dear -

Molly C (France)

Woo-Hoo, you have a good doctor. Just get him off those CT scans...! 'Smile'.

Yes they want to leave my ovarian tissue if it is ok.
I have avoided MRI as I have extreme clustrophobia (sp?)
Broke down just getting the CT scan.
They are looking to sedate me for the MRI.
Will use that search thingy for the endo stuff.
Thanks again.

Endo - 193 results to a search here. Happy reading! Remember to give your eyea a rest, OK?

Claustrophobia and MRI. Yep. Go along with you. See IF you can locate an 'open' MRI. Not too common to find, but do exist, and may be found in the bigger hospitals.

In fact will be posting on the open MRI machnes when I get my act together. Quite interesting, especially for us spondys, with hip/pelvic/back problems.

Go well - mind the eyes, OK?

Morning Molly,
Got a problem this morning you cant stop posting your trying to catch sue arnt you sneaky innit.

Sorry aussiegirl interupting your post.

Kevin

Caught in the act, guilty as charged me'lud! <LOL>

Aussiegirl, you'll get used to this hon, the 'wags' of KA take over threads and one of em (who aint reported in yet) totally takes over and shreds em... But they all got great hearts and in the right place. Love em.

Molly C

Its ok. I am used to that on another chat site. Between here and there I have already had great support and that helps more than anything.

Hey Aussiegirl, welcome! I too started off with dreaded knee problems as a kid.
btw don't worry too much about the radiation from a CT of a small area. You get about the same amount of radiation from a return long-haul plane flight. It's still not too high. Maybe ask for a simple xray of your neck to start with instead - that's next to no radiation.
Hope we can be of some help for all your other questions.
Glad to have you here.

just wanted to say hi! looks like others are helping with all your questions.

i don't have a definitive dx other than "inflammatory arthritis" but i too have a combination of peripheral and spinal/SI joint issues, namely inflammation of the tendons/ligaments at the entheses and thus tend to have multiple tendonitises and pull or tear various tendons, plus evidence of "arthritis" in the various joints that have been scanned, plus inflammation showing up in the nuclear bone scan. also have gastritis (and only seem to have real intestinal issues when the gastritis is flared; if i keep the stomach under control, intestines basically ok). i do think the two inflammatory diseases are connected, and my stomach troubles are not caused by drugs, though drugs like NSAIDs and even the cox2 inhibitors like celebrex will cause a flare, but the gastritis itself is genetic, just like the arthritis. also have blepharitis. would be surprised if all these inflammatory diseases are unrelated. guess i'm sharing to say that i think we can have all these different things as part of an underlying autoimmune inflammatory arthritis.

also wanted to comment on diet. i too have found that diet helps my gastritis a lot. for me i have to limit or eliminate acidic foods (citrus, tomato sauce, cranberry, pomegranate, other acidic fruits, especially underripe fruit), dairy (a little bit is ok, like an ounce of cheese or 1/2 cup yogurt, more than that and my stomach becomes inflamed), caffeine. if my stomach is really bad and thus my intestines are really bad, also have to watch the roughage (most fruits and veggies) but if the stomach is good, then those things don't bother me. and have been on a low starch diet for several years; its excellent at controlling my blood sugar and cholesterol levels including triglycerides and HDLs (started it due to being prediabetic with skewed cholesterol levels) and gives me excellent energy, but has done nothing for my arthritis. while its not the no starch diet, i'd imagine that if there was a connection, it would at least help some, though i could be wrong. but watching what i eat has helped my gastrointestinal system and my blood sugar and cholesterol so much that i'm very good at being on my diet, as you seem to be.

since i don't have a firm DX, the doctors have been very hesitant to consider the biologics, but since you do have a firm DX, its definitely something for you to consider. so many (here) have had such good success with them. i often hear "they gave me my life back", though i know others that have not been able to take them due to side effects. still its something to consider.

Without a firm DX, my rheumy has been very hesitant to prescribe drugs other than NSAIDs which i can't take. ironically he uses "safety" as an excuse, yet i can't think of much more dangerous than NSAIDs with a family history of people dying from bleeding ulcers and a personal history of gastritis. guess its all perspective. however, i was able to use his arguments to try LDN (low dose naltrexone), showing him the evidence of it working for other autoimmune diseases and appearing to be very safe in terms of lack of side effects. so i've been on LDN since september. while its not a complete answer for me, it does seem to be helpful. others here are also on it and talk a bit about it, bridget and molly are two people who come to mind who have talked it up. so LDN is another thing to consider. not sure if one can take LDN and a biologic at the same time? i've read conflicting information on this. maybe someone who is on both will chime in.

sorry to hear of all your physical issues and pain, but glad you have found us. as you will see, we are full of "advice" and "opinions", hope you find the useful gems amongst it all.

Thanks Sue.
I am sucking in all this info and writing a lot down so I dont forget. Stupid trigger finger is playing up from all the writing but I dont care.
So far everyone has been more than welcoming and helpful.
Thanks to whoever started this site.
I was literaly a life saver for me.
I cant thank everyone enough.

Thats good aussiegirl we all help each other in many ways you will make a lot of friends from all over the world gather lots of info and have to put up with a few idiots (like me)who try and bring a bit of humour to things.We might all have a crappy disease but we can still have fun while we learn and kick as.

Kevin

trigger finger: don't have that exactly, but hands, wrists more specifically, flare at times, and typing definitely an issue when they are in a flare. when really bad, nothing works as well as contrasts baths (alternating ice cold and very hot water, a minute or two in one, then a minute or two in the other, for 15-20 minutes total, a few times a day). when just a little bad, doing dishes in hot water or my fairly new (and loving it) paraffin wax bath (http://www.therabathpro.com/) do the trick at keeping the hands under control.

one of these days will get around to voice recognition software. have found a mouse to be useful instead of just the keypad of the laptop when thumbs especially bad.

one of the things i've discovered through PT and here is all the little tricks and devices to help make life easier. while not a cure, every little bit helps.

Sorry to learn of your problems. Glad you are joining us though. There is a lot of knowledge on this site. A lot of support as well!

Craig

One wishes that it were - 'just akin to an airplane flight'... Not so Megan.

There has been a deal of information recently, like over the past year, on the dangers of radiation exposure, and there is alaso concern emerging on radiation scatter (as in/like with those airport scanners). Doctors have woken upto the fact that there has been/is too much rad exposure. The information is out there.

18,200 hits on radiation exposure, specific to CT scans, here's just a few:-

CT Radiation warning, ct scan radiation
Web ResultsCT Scans to be Equipped with Markers to Prevent Radiation ...

Feb 26, 2010 ... But CT scans deliver a much higher radiation dose than ... It would also offer a red alert warning when a patient is about to be given a ...
english.pravda.ru/news/science/health/26-02-2010/1123... - Similar

CT Scan Manufacturers Pledge to Add Radiation Gauges After ...
Feb 26, 2010 ... CT Scan Manufacturers Pledge to Add Radiation Gauges After ... It would also offer a red alert warning when a patient is about to be given a ...
www.shoppingblog.com/blog/226107 - Similar

DC Metro Area Medical Malpractice Law Blog: FDA Warning: ...
FDA Warning: Excessive Radiation from CT Brain Perfusion Scans. By Catherine D. Bertram, Esquire. The U.S. Food and Drug Administration, FDA, ...
www.dcmedmalblog.com/us-food-and-drug-administration-... - Similar

[PPT]Radiation Safety in the PET Facility
Radiation Warning Signs. Cyclotron. PET/CT Scanner. “Hot” Lab. Record Retention. Shipping and Receiving (3 years); Area Surveys and Trash Surveys (3 years) ...
www.safety.duke.edu/radsafety/slides/PET_CT_Web.pps - Similar

[PDF]Radiation Safety Standard: Computed tomography ...
Radiation Warning Sign and Light. Radiation warning signs must be displayed on the outside of all entrances to the CT room. The entrance to the CT room must ...
www.health.vic.gov.au/environment/downloads/radiation... - Similar

Radiation From CT Scans May Raise Cancer Risk : NPR
Dec 15, 2009 ... Doctors love the detailed pictures created by CT scans. Patients often expect a scan. But now researchers are warning that the radiation ...
www.npr.org/templates/story/story.php?storyId=121436092 - Similar

(and of course more of the same, 18,194... Note dates - and I have posted several times in rcent months on these specific CT radiation warnings. ANY decent radiologist worth their salt, will impress that one cannot be too careful on considering your level of rad exposure.)

-------------------

ONE CT scan is equivalent to 120 standard X-Ray exposures, *at the same time*. i.e. `not spaced out over a number of months or years. Full dose, in one hot shot! That is a number, and any radiologist will advise that 120 X-Ray exposures is somewhat dangerous, let alone the cumulative effect of additional standard X-Rays...and let alone the possibility of adding in long distance flights or owt else in the world outside of medecine and diagnostics...

Hospitals are now saying that too many CTs are being requested and that the radiology industry needs to do summat about actually cutting *down the level of rad exposure. The FDA has jumpoed in with advice, and these strictures are *now being implemented*, but has only 'just' started to be implemented, and that is in/with the new scanning machines.

Can only hope that hospitals look to themselves and their diagnostic equipment and take on board the MANY recommendations.

Remember the radiologist in the UK has warned me about my own level of rad exposure. He says, too much - which same has not been countered by medics over here in France: they agree, too many X-Ray exposures. That is X-Rays, CT Scans and a Nuclear Bone Scan, and tjhis spaced out over a few years - which does not take into account any long haul flights or any scatter radiation or owt else outside of medecine! Now, no more X-Rays, will only consider MRI. Got enough problems without the (probability of) adding to em.

662,000 results with a slightly different search. Here's a sample:-

More Offers: CT Scans Radiation exposure
Web ResultsComputed Tomography (CT)

Feb 9, 2010 ... Radiation exposure is a concern in both adults and children. ... For example, if a CT scan is performed on a child using the same parameters ...
www.fda.gov/Radiation-EmittingProducts/RadiationEmitt... - Similar

NEJM -- Computed Tomography -- An Increasing Source of ...
We focus on the increasing number of CT scans being obtained, ..... Mass screening with CT colonography: should the radiation exposure be of concern? ...
content.nejm.org/cgi/content/full/357/22/2277 - Similar

Radiation from CT scans linked to cancers, deaths - USATODAY.com
Dec 15, 2009 ... CT scans deliver far more radiation than previously believed and may ... doctors about alternatives that don't involve radiation exposure. ...
www.usatoday.com/news/health/2009-12-15-radiation15_s... - Similar

GIST Support International - Radiation Exposure from CT Scans
Sep 23, 2007 ... Donald P. Frush, MD explains the risk from radiation in CT scans weighed against the benefit of scan results.
www.gistsupport.org/ask-the-professional/radiation-ex... - Similar

X-ray computed tomography - Wikipedia, the free encyclopedia
However, there are several methods that can be used in order to lower the exposure to ionizing radiation during a CT scan. ...
en.wikipedia.org/wiki/X-ray_computed_tomography - Similar

CT scan radiation may cause cancers - The Globe and Mail
Dec 15, 2009 ... The high doses of radiation patients receive from CT scans may cause ... caused by exposure to radiation during computed tomography scans. ...
www.theglobeandmail.com/life/health/ct-scan-radiation-may-... - Similar

CT Scan Radiation May Lead to 29000 Cancers, Researchers Warn ...
Dec 15, 2009 ... Radiation doses from computed tomographic (CT) scans are higher than ... In the latest study, exposure varied widely both within and between ...
abcnews.go.com/Health/CancerPreventionAndTreatment/ct-scan... - Similar

Couple here that are very good - particulary liked the one that CT Scans will eventually come with an informed consent warning...phew! Now that's summat innit? (Don't think longhaul airplane flights come with, nor are likely to come with, informed consent warnings...'smile') This stuff is serious Megan.

There is a serious position out there for patients. We as patients and especially with conditions such as ours, that require any number of screenings, need to be informed, and well informed, of ALL risks not just with the meds that might be involved but also in with the diagnostics. Our bodies. Informed consent on ALL levels required.

CT Scan Radiation Exposure Much Worse Than Originally Thought ...Dec 15, 2009 ... CT scans will eventually come with informed consent warning patients of the risk of cancer from CT scan radiation exposure. ...
thehappyhospitalist.blogspot.com/2009/12/ct-scan-radi... - Similar

FDA Issues Warning: CT Scans Reported To Cause Hair Loss and ...Feb 10, 2010 ... FDA Issues Warning: CT Scans Reported To Cause Hair Loss and Other Serious ... high levels of radiation during CT scans of their brains. ...
www.thebaldtruth.com/articles/fda-issues-warning-ct-s... - Similar

Cedars-Sinai radiation overdoses went unseen at several points ...As a result of the radiation overdoses, the FDA issued an alert warning of the possibility that CT scanners at other hospitals could be set wrong. ...
articles.latimes.com/2009/oct/14/local/me-cedars-sina... - Similar

(and 'other hospitals 'could be set' wrong'. Well, well. Sigh).-------------------

Got to be forever looking over your shoulder, a big bore, but if you don't, no one else is going to do it for you!

Aussiegirl - there's your answer to the radiologist refusing to CT your neck... Too close to the brain etc etc. At least they knew summat and were careful with you.

MRI Saggital STIR in future. Way to go 'smile'.

Now to locate the information re open MRI scanners and specific application to our own spondy concerns.

Dig, dig..

Absolutely.


Yes. Some plantar fasciitis perhaps. The Osgood-Schlatter's disease is a very specific form of enthesitis, which is very common in AS.

I think it would be best to get him on NSD before inflammation leads to permanent damage.

In a reactive arthritis caused by giardiasis, it is possible not only to trigger AS in susceptible individuals, but I wonder whether the OSD is related to AS, ReA, or just normal for Your family. ReA due to giardiasis can totally mimic AS in the early stages. Plantar fasciitis is, however, NOT normal and very probably due to AS and it is frustrating to see it in such a young child. I would not hesitate to have some evaluation for giardiasis, however; yourself, also. This can be the key to Your AS. Any other ReA (salmonellosis, shigellosis, etc) can likewise trigger AS.

KickAS,
John

HI and welcome to KA.

You've had quite the journey, but the road led you here, and that's all to the good. These are some of the finest folk you'd ever want to meet.

Hugs,

Yes I am aren't I Kat....

Hi Aussiegirl,
I am also very new to KA and I am amazed at the amount of information here. I am so sorry that it has been such a rough time. I can completely relate, I am still in a major flare. Just about to give myself shot number 4 of Enbrel. So far I have not found anything that reduces the pain. I have been taking Ambien CR to help with sleep. If I was not able to get some sleep I do not know where I would be!

Yes, dear. You are exactly who I was talking about.

Warm hugs,

lol.......I bet


Ho Kat now I am sure your lunch break has finished!!!!!

Just wanted to stop by and say an official welcome. I'm also young, 28; it can relate to you. Keep posting, there are some grand people here!

Samantha

were here oh

welcome and hi, aussiegirl!
cc

Thanks for the warm welcome everyone.
Called it a night when I couldnt keep my sore eye open, the light from the computer was realy making it hurt. Did not get a lot of sleep last night again but feel a little more refreshed than I did the morning before so thats a good thing. Sleep didnt help my eyes however, particularly the left eye feeld like it is on fire. But it will be time for the cortisone ointment soon so that should help.

Seems every joint is swollen and hurting this morning. Can handle it for now I think. Trying not to take the oxycodone if I can help it.
Rotten post nasal drip is driving me crazy though.

Everyone is so lovely and supportive here and even a little cheeky and I like that. Thank you all.

Yes that Kevin.........cripes......cheeky as heck...my advice is to ....AVOID HIM...........Now me on the other hand......

Hi aussiegirl...I just wanted to drop in and welcome you to our community, I'm sorry that you have this dreadful disease and are having a rough go of it but I'm glad that you've come here...this is a great place, full of wonderful, caring people and lots of great info and advice...I hope you get as much out of it as I do...again welcome to KA!!!

Hi Aussiegirl, welcome and sorry to hear you're having such a rough time of it at the moment! Have you been seen by an ophthalmologist at all? It sounds like you may have an iritis flare at the moment, which needs prompt treatment to prevent complications... I'm a veteran of iritis flares (at 33) and what you describe sounds very familiar...

All the best,
-Anke

Welcome. I am glad someone told you about us. I am so sorry you are in so much pain. Your story sounds like so many of us. I hope you will come often to share and be shared with. I have so many wonderful friends that I would never have had a way to know without this forum.

I have an autoimmune overlap syndrome. My pain just about gets me. I don't tolerate the Biologics and am having to quit the steroids. We are just trying for some pain control and quality of life. Haven't gotten there yet. Morphine made me really sick last week...the immediate release. I take MSContin 30 mg. twice daily. I can handle that but I can't handle 15 mg. at a time.

Come back often. I am looking forward to getting better acquainted. I will be thinking of you and praying for your pain relief. That is something I do every day for my KickAS family.

Hugs and Blessings.
Possi

Well sounds like you've had it tough. your in my prayers and I'm glad you found this wonderful site it sure has helped me out. lots of nice people here and some very good information about AS its not any fun but it is sure easier to cope with good friends that you'll find here Good luck

Well sounds like you've had it tough. your in my prayers and I'm glad you found this wonderful site it sure has helped me out. lots of nice people here and some very good information about AS its not any fun but it is sure easier to cope with good friends that you'll find here Good luck

I went to just my optomotrist today to see if he would refer me to the opthalmologist. I have a stimatism in my eyes and wear glasses already and the pterygiums but I told hom about my AS and asked him about the pressure and pain in my upper eye and about the redness. The cortisone ointment has helped settle the redness but the pain is still present and it just feels swollen if that makes any sense.
Anyway the optomitrist didnt seem to care and said just to see how it goes with the ointment. I dont understand realy if you lovely people here say it is important and my doc said it was, then why was the optom so blarse? The hospital doctor the other night didnt even want to know about it. Yet you read on the AS info sites that you are to go to the EMD if you are experiencing these symptoms.

I am cinfused is it something to get seen to and take seriously or not?

Thanks again, sorry again also for all the questions.

can you just go to an ophthalmologist on your own without getting prior approval from another doctor? if so, that is what i would do. if it is iritis / uveitis, that can be serious. and there are more "aggressive" treatments that the ophthalmologist may choose to do. better safe than sorry when it comes to the eyes. it could be nothing new, but then again......

just because one doctor downplays something, doesn't mean they are correct. my GP has downplayed a lot of things that my specialists take very seriously. i'm lucky i don't need all the referrals that i used to.

No here you need a referal to go to the opthalmologist.
My doctor was worried, hense the cortisone ointment and asked me to go see the optom. The optom didnt even care that I had AS the only thing he was worried about was the ointment as glucoma (sp?) runs in my family and my dad has it.

I am so over fighting to be taken seriously. Have been doing it all my life.
Will press the optom again on Thursday when I take my daughter for her 2 yearly check.

can you get your GP to send you to an ophthalmologist instead of sending you to the optometrist, since he sounded concerned, sounds like he would work with you? in either case, i'd keep pressing the issue if the steroid creme isn't working. if it were working, then no, you wouldn't need anything else perhaps, but if it's not working, then obviously you need something else.

and i know saying to keep after it is easier said then done. i've had to really "fight" with a few doctors to have my needs met / to be taken seriously,
and i hate it! i so want to work as a team, so hate any confrontation. started taking my husband with me to important appointments and that has helped a lot, i am definitely taken more seriously. i still do most of the talking, but having another person in the room, the doctors are more careful how they treat me / what they say to me. a number of other people here have said taking someone else with them to appointments is helpful. maybe you are already doing that? just keep up the good "fight", now you have 7000 others to back you up.

Thanks again Sue. Will ask the doc to refer me. He seems realy good with all this.

On another note. I have had trouble getting an inittial app with a rheumatologist most I had to wait for 3 months min. But the last one I rang wants my doc to fax the referal through with all the problems I have and then he rates you based on this and gives you an app time based on how severe he rates you compared to other patients. If I explained that ok. So fingers crossed I get in soon.

that last part sounds familiar here as well, but even if you have to wait a little bit, at least you're moving in the right direction. i'd think inflammation of the eye might move you closer to the front of the line? fingers crossed for you!

Iritis/uveitis is generally diagnosed with a slit-lamp microscope. I'm not sure if all optomotrists have this, or could even diagnose it correctly... I went to my GP with my first iritis flare many years ago, she gave me drops for conjunctivitis even though I was certain it wasn't conjunctivitis as I'd had that before (and told her so!) - but the best thing she did was say that if it wasn't improving in 24hours, to go to the local hospital as they had an eye emergency unit there. Needless to say, that's what I did 24 hours later, it took a little while to get that flare under control but we got there.

It's good to know that the cortisone ointment is making it feel a bit better - steroid drops are normally prescribed for iritis flares, I've occasionally been given ointment for overnight in a severe flare. Yes, with your family history of glaucoma pressures are something they'll need to monitor - but for now, it's most important to get the inflammation under control rather than risk damaging the eye!

I know it's hard to keep fighting sometimes - I had to fight to get referred to a uveitis specialist, when this kept recurring for me - but you only have one pair of eyes, and unfortunately damage can occur quicker in the eyes than elsewhere in the body. I hope your doc can refer you to an ophthalmologist and you are able to see them soon.... please keep us posted!!

-Anke

Well it stinks that your optometrist doesn't know anything about AS. When I got iritis a couple years ago the optometrist was totally aware of AS and kept asking me about back pains, and that's how I ended up with a correct diagnosis finally at age 35.

Sue's suggestion about asking your primary care doc to get you into the opthamologist sounds right on. Let iritis go too long and it damages your vision. I was close to that, had residue on my lens for several months but at some point it seems to have healed.

Ok I will do.
Doesnt help that me pterygium in that eye has grown heaps lately.
Are you able to upload photos here at all?

Also if any mods are reading this, my boy has signed up (jrshadow) I hope thats allowed. Thought it might be good for him also.

Hello Aussiegirl

Sorry to interrupt your post which I can see has moved on to discussing current problems you are having.

I just wanted a chance to say Hello and welcome to you.

It's so nice to meet you and just wanted to say I hope you get all your appointments sorted and that someone starts looking after you and taking your needs seriously. Hope you can get the referral you need from your GP.

Sue is so wise about taking someone with you to appointments (if you can - and don't already). I had trouble with my Obstetrician with my 3rd baby all he kept talking about every appointment was that I was putting on too much weight and I'd never get my figure back after the baby. He soon stopped that nonsense when my husband came with me the next time.

You've got a lot on your plate with being a Mum as well, hang on in there - hope you get things under control soon. If you can at least get your eyes sorted, that's one thing off the list. A long list of problems can make you feel like you are falling apart.

Take care won't you.

I will thanks tinkerbell. And you are right I do feel like I am falling apart.
The thing that anoys me the most, other than the pain. Is that you just get one thing sorted and think phew thank god, and some other damm thing comes up.
But feel like there is some hope to control this or at least get by, thanks to all the lovely people here.

I don't know if this will help at all...

But when everything gets on top of me and I fell like I can't cope - my lovely Mum always tells me to lower my expectations of myself right, right down. This way you are able to start achieving (albeit small things) instead of never reaching your goals. Does that makes sense.?

I use this technique from everything to my expectations of the children to daily tasks etc. It helps boose moral a bit I find.

Like instead of thinking - right today I need to do 2 washloads, clean the house, hoover, go to bank etc I just pick one thing that is the most important or simplify a bigger task like cleaning the dirtiet room in the house not the whole house (difficult choice at the moment!!!)

I know your problems are health ones - but they affect homelife and worklife too. If you are having a patch where you aren't having much luck improving health issues - sometimes it helps to find another area to work on that you can have an affect on.

Just a thought!

Thanks for the tip.
Yes I have been very depressed about the state of the house and everything lately.
About 2 weeks ago, before my diagnosis of AS I was in so much pain the house was a mess so I downed half a box of panadol, then I got scared and made myself throw them back up.
I also rang the lifeline depression line here in Australia and talked to someone until I got a hold of myself.

You are right I need to make smaller goals and be happy if I achieve them.

Have to say my kids are legends though. They are a huge help god bless them.

Hello you,

I really understand how you feel.

I just want to add something else someone told me once:
You can't always be "super mum" (wife or whatever) sometimes you can just be "good enough mum".

It's as important (if not more sometimes) to get to a healthy place in your head. Try everything you can to boost yourself up. You sound so low... think of some things you can do that will make you happy... have you got a friend who always makes you laugh? Can you put a feel-good chick-flick on? Can you buy yourself a treat (maybe not ice-cream.....! lol)

Be kind to yourself - you are not well at the moment and need some TLC. You are not failing at anything - your body is letting you down.

Just wanted to send you a really big

Thanks you are a sweety.
To be honest it was the lady on another site that saved me and sent me here.

I hate coming here new to it all and just throwing all this on everyone, but I was in a bad way and so happy everyone just understood and didnt regect me.
Am feeling much better now thanks to everyone here. Pain is even a little better with the oxycodone eye is still killing though.

Sorry to keep going on about things, but you are right I have been trying to be super mum and everything else. My family treats me like there GP as I have a great interest in medicine and was going back to study to be a doctor but not now.
Anything to do with technowlogy, computers phones ect, I get called. I spend so much time fixing things for everyone else I forget about myself sometimes.
I am also the gear steward and bunk room manager for my life saving club. I think I have just pushed my body too far for too long trying to just forget about the pain, even when laid up for days at a time.

Will stop rambling now sorry
But truely huge thanks to everyone

Sorry about all the spelling mistakes, cant be bothered editing it all

Listen, hon
This site is all about sharing your problems and helping others with theirs. Reading your post will help and support others - some will identify with your problems, some will be helped by peoples replies. All, will want to help - and I can see that you've been responding to posts and encouraging people all over the place on this site!

I'm not surprised by how much you have been trying to do... I kind of guessed by how overwhelmed you were feeling. I always take on too much, like you. We have had family crisis after family crisis the past few years and I seem to have been at the centre of all of them, holding everyone together - not an easy job if you're fighting fit....

It's time for a rest, girlie, to get yourself on the road to recovery. Everything and everyone will still be there if you take (much needed) time for yourself.

Don't ever worry about going on. We are all in the same boat, with the same disease and lots of limitations. You are important and you matter - don't forget that.

we're here for you. please never apologize. people like to help others, makes us feel useful ourselves. its what we're all here for, to help one another. tinkerbell might be new to this site as well, but she's such a positive presence, glad she is helping you to feel better too, as she's giving good advice. usually i try to be so in control of everything but when things get to be more than i can handle, i just give it up, and that helps a lot. things have a way of working themselves out, and just letting it happen can be the best thing. i used to try to be all things to all people, now i focus more on me; don't think everyone in my life is on board with that, but they'll just have to adjust. hubby and i am on the same page, to me that's all that really matters.

PS the food network is showing a special on ice cream!

PS the food network is showing a special on ice cream!

LOL that makes me laugh. And thats a good thing.

Ok whats with the 7's. Im member #7000 and I just made post number 70 here.
Might have to look up what the number 7 means I think.
Anyone know?

Sue's definitely right about feeling useful.
I joined this site because I really want to help and encourage others who are far worse off than me.
I realise that I am very lucky to have had a quick diagnosis and respond well to the No-starch diet.
Having a flare up after 10 years (almost forgetting I had AS) has really been a wake up call for me. I am quite ashamed at not taking my disease seriously and humbled by peoples suffering on here.
Thanks for your nice comments about being a positive preseence, Sue, but it takes one to know one!

HI and welcome Aussiegirl (from another ex-Banana Bender)

I had Sever's Disease (in the heels) and my now 14 yo son had it when he was 10-11 y.o too. Some days when he gets up off the couch he staggers a bit and when I questioned him he said "I feel a bit stiff" so I worry about him too.

It's up to you if you get him tested for the HLA B27 marker. If he was shown to have it, there's no guarantee that he will get AS, but it certainly increases his chances... I would just keep him away from water and ice cream for the time being! Seriously though, if he happened to need a blood test for anything else, I might be tempted to ask to have a HLA B27 done as well. That way you can keep a closer eye on him, and a diagnosis could be made much earlier and he might not end up in the sort of state that you (and I) are in now...

I do the NSD and I know it would be hard for my carb-loving growing teen, but the choice is simple - terrible pain or a restrictive diet - a No-Brainer for me *most days* (never easy, though...)

What part of wet Queensland do you live in?

Louise

I am at Bribie Island and flooded in atm I think with all this rain.

My son is happy to start the NSD that I am on. Personaly I have gotten no relief from the paon from it, but as proven here, everyone is different and I figure its worth a try.
My boy has gone from a cross country champion to not being able to run at all without a limp. Realy bad when he wakes up or sits down for too long.
Hope you son doesnt get too bad.
And hugs for you also.

Side note, flights to Melbourne from QLD were only $49 the other night can you believe that?

Oh no!!! Bribie Island?!?!? All that water around you and plenty of ice cream outlets as well. I would be putting floaties on this kid before I let him leave the house!!! Or maybe get a couple of those cheap flights to (dry) Melbourne...

I spoke to my sister in the western suburbs of Brisbane a couple of hours ago - certainly a tad damp in that there part of the world...

It took a while for me to get a turnaround from the NSD - nothing spectacular - just slowly, slowly, things stated to change - waking later in the night from the unbearable pain, feeling slightly less stiff first thing in the morning, and taking less hours to 'get going' fully, then I started to notice that I wasn't desperate for the regular pain relief - I was like "Oh yeah, must swallow some pills soon...." and so it went on.

I'm now 11 months into really strict NSD, and just the other day I ventured into the unknown territory of the LSD (low starch) and have lived to suffer and regret my adventure...

However, I am no longer addicted to codeine, and have halved my other pain meds. Soon I want to start weaning more and see how I go. I gotta tell you though, I am no longer a grouchy (well, perpetually ANGRY, more like....) ogre of a wife and mother. I work as a physio, and some days I just wanted to scream at the patients to shut up and stop moaning!!! (not good for one's professional reputation and would somewhat harm the 'return rate' of the patients... )

The Osgood-Schlatter's and Sever's diseases tend to run a 2 year course, during which time you just have to stop aggravating activities, and use loads of ice, maybe some anti-inflammatory creams, and some gel heel cups in your boy's shoes.

My son's Sever's has completely resolved, but I am just watching him like a hawk. He has just started Roacutane treatment for severe cystic acne (after being on antibiotics for 6 months...) and one of the side effects of that is 'joint and muscle pain' so I do worry... At least he has been taking Klebs Killers for the past half year...

Hope you get a good nights' sleep - I get them occasionally, as I have been a light sleeper for as long as I can remember, so it doesn't take much pain to wake me... I treasure those mornings when I wake when it's light and I remember waking <6x through the previous night.

Sorry Molly, you are correct - I was tired and confused the mrem amounts of xray and ct scans. Oops! Thanks for catching that.

Still, if a ct is warranted, I wouldn't panic about one scan. The benefit might outweigh the dangers - ie. if it means it leads to prompt diagnosis and treatment if queues for MRI are way too long. But I too would question the safety of many repeated ct scans if they're not 100% necessary. Agreed that MR imaging is likely the safer route.

Hope I'm making sense this time around. lol

Hi Aussiegirl

Welcome, to the best family of friends

I am still going back and forth with AS and PsA. I did notice yesterday that my Rheumy, referred me back to the Arthritis Society for PsA (Psoriatic Spondylitis Arthritis).

I am like you and Tinkerbell, I know I am falling apart. I can't take drugs for pain, because of my severe and many allergies and severe sensitivies, that continue to grow. I can't follow the NSD as I may have Porphyria (AIP), and must follow a high Carb diet. I am celiac, and have other diets I must follow. I think the worse I am dealing with is the neurological symptoms, that could be MS or Porphyria. The lesions on my brain, hopefully not growing in number.

Like you if it weren't for my family of friends here, I would have given up. They have been here through depression, not so nice doctors, and my constant complaining. I love them all.

Hugs - And thanks for the lovely Birthday wish yesterday.

Gerri

Hi Gerri, Hope you had a great birthday.

Have been on NSD for a little over 2yrs and no pain relief but hoping it will help with my boy.

Sorry to hear you have had such a rough time Gerri.

my plan worked then!

hope between your doctors and this site, you just start doing better and better

Hi there Aussie girl and so nice to meet you! I'm sure sorry you aren't feeling well, though! I hope you can feel better soon.

Quote: And I have tarigiums on my eyes and get very red and swollen eyes that are sensitive to light.

I'll just say one quick thing about your eyes. If you have red eyes and inflammation, have you ever been checked out for uveitis or iritis? Do you see a specialist? You can go to the MERSI website in Cambridge MA and they can direct you to a specialist in your area.
Let me know if you want a direct link or more information or if you are already all set with that, ok?
I'm really sorry you are in so much pain.
Jan

Hi Megan - Knew it weren't like you to get stuff like that wrong...no way 'smile'.

Yes, 'A' once, and only IF the MRI queue is too long - but to check out the radiaiton is/has been corrected on the machine they propose using (like they'll tell one? <LOL>) Yep, made sense Megan.

OK hon - take care.

Thats what my doc sent me to my optomotrist for but he didnt seem to care and said he would see how the doctors cortosone ointment works before refering me to a opthalmologist. grr
I tell you what, the redness has reduce but the pain and feeling like it is swollen is only getting worse.
I don't know what that means.

Just a quick question if I may
Have been doing a lot of research on AS online and it was suggested a number of times that people with AS should wear a medical allert bracelette or necklace.
Does anyone here wear one?
Is it worth wearing one?

Hi aussiegirl and welcome to KA!

I've quickly read through all of the replies here but fear it this has not been expressed strongly enough...

With your diagnosis of AS and the eye symptoms you describe -- you need to been seen URGENTLY by an Ophthalmologist to be properly checked for iritis. (and not an Optometrist) Not tomorrow or the next day but NOW.

If what you have is indeed Iritis -- you need to be aware that this can cause permanent damage to your eyesight quickly and because of this it is considered an emergency. If you cannot get an immediate referral, please go to a hospital emergency. Tell them very clearly that 1. you have a diagnosis of Ankylosing Spondylitis, 2. you fear you might have iritis, and 3. you want to be examined by an Ophthalmologist.

I really do not mean to frighten you but do want to stress the urgency. If they diagnose iritis they'll most likely give you steroid drops, dilating drops and a steroid ointment for when you sleep and monitor your eye pressure.

I really hope it turns out that you don't have iritis and glad you have found our group!

My best to you,
mig

Oh and btw, your son should be able to access his membership account now.

Hi,
Yes I wear a medical allert bracelette have done for years.Its a good idea to inform people of your AS if you have an accident and you are unconscious they will know to take care with your spine and also it lists all the drugs and any other problems you may have. I would recommend all AS patients wear one.

Kevin

Thanks for that mig.

I was at the emergency department on Sunday night with the pain and I told the doctor about my AS and that I was having the problems with my eyes (left eye particularly) He didnt even look at it and the only thing he said was to go back to my rheumy, who I havent even got a first app for.
I explained to the emergency doctor that I was worried about iritis and he just said see the rheumy.
So frustrated with how I keep getting blown off.

I think the optom wasn't worried as the cortosone ointment has reduced the redness but he wouldnt listen about the pain and swelling. He could barely look at my eye as the light from the machine made it almost impossible to keep my eye open.
I even ticked the box to pay for a special pic to be taken and he just said no he was not doing it. GRRRR

May I ask what is actualy written on your bracelette Kevin?

Hi again - I'm not sure of where you live, if it is rural or if you have access to another hospital in the area perhaps... but I would either go to another ER or go back in to the same one. Or phone area hospitals to ask if any have an Ophthalmologist on staff if that might help. Ask if they have the slit lamp equipment.

The first time I was diagnosed with it was by a young intern at an ER who just happened to remember something about it from med school and I got lucky that he happened to figure it out. It is easily diagnosed by the right specialist but many docs won't be aware of it or of the urgency. Tell them you have 'heard' it is critical to be examined.

Please go back! Be firm. Ok?

My best!
mig

Mine is called an sos bracelette it has a water proof compartment that unscrews and inside is a long piece of paper with all my details on,Diseases,blood group,medication, and personal details phone numbers.

I have seen his bracelet, a great idea it says


'Kevin is Great'................

What great big clot I know

LOL
You pair make me laugh.

Alan stop it we are making people laugh we are supposed to be all bent up and in pain. We are giving a bad impression of AS .

That is me in the picture with my mum and my sisters.

you guys are a hoot!

Welcome jrshadow - two sisters - they must keep you busy.

Hugs to you, your sister and mum

Yes it is hard with 2 sisters. One is older and one is younger. So it keeps me busy. But I love them most times. When they dont annoy me and make me angry. lol

Aussie girl, welcome to the board. I will share my frustrating eye story: I was having tearing redness and eventually light sensitivity. GP said it was allergies and gave me a spray. Then I wound up in the hospital for a fever and compromised immune system. My dad told me that it could be iritis (he has it) and to push for an ophthalmologist. So I'm in the hospital for 9 days, they tell me the ophthalmologist is out of town and no one can see me. So I suffer with this for 9 days recovering from who knows what. I had lots of antibiotics and it did not help my eye at all. So after I get released, I'm given an appt with an ophthalmologist who then within minutes diagnoses me with the WORST case of ocular herpes he's ever seen. He was aghast that the hospital did nothing to help me with my eye. Okay, so its not iritis, but it is still damaging to the eye. 18 months later I'm still putting drops in my eyes trying to calm it down.

So I hope you can get doctor to realize the urgency of your situation. It only takes one, but of course, finding that one doctor is the trick.

Jake you need to be nice to your sisters.

That sounds very frustrating mom2many.
Glad you finaly have treatment for it.
I will go back to my doctor and see what he says again.
He must be getting sick of me by now but he doesnt show it.

http://www.uveitis.org/contact.html

Thanks heaps will check it out tried to early but couldn't find it.
My head not realy with it.

I just posted the contact information for you to find a specialist closest to you. Uveitis is very rare, if you can advocate for yourself and let your doctor know that uveitis/iritis can lead to blindness and far too many people don't get treated quickly enough, appropriately, aggressively enough. The inflammation has to be fought.
Jan

Alan wears a bracelet as well.. but his doesn't say "Kevin is great..."

LOL, Hubby keeps telling me he always thought I should wear a dog collar. Very supportive not. LOL

Hi Aussiegirl,
Wow... you have about the same history as me...
I have swollen my knees. I also have a lot of problems with my hips and my left and some time the right hip dislocates.
THIS HAPPENS ALL THE TIME... IT IS SOOO PAINFULL!!!
I HAVE MISCARRIED 2 SETS OF TWINS AND ONE STILL BORN and have 2 children
Have inflamation of the pelvis. Had to have my appendix removed along with a hysterectomy.
I have been on meds and anitbiotics for years
I have IBS, reflux and other stomach problems from the medications.

I am now off the reflux meds (am making kifer from raw Jersey Milk)This is a lot of work, but so far it is worth not having to take the stomach meds.

I have low blood pressure except when I have broken bones.
One bout of Irisitis
Broke Back, pain in my lower back, mid to upper back, left shoulder,(Bursitis) neck,(Mine froze up) knees and legs.
Got the diagnosis months ago confirmed the diagnosis of AS.
I know what you are going though. I have had some luck with the Low Starch Diet,, but I keep falling off the wagon...
Never was good at Dieting. My Doc Gave me Indomethacin ER 75.
Gives me relief... but take sparingly, as I don't want to mess my stomach up again.
I am trying to heal my gut. I am 59... I am lucky this did not start earlier in life.
I notice when I went on a 7 day fast all my pain went away except for being very hungry. So I figured there must be something to the Starch connection.

Wow kbeadle, our experiences are so much alike.
Thank you for posting that.
I am not in a very good state again today, the pain is getting unbareable and the oxycodone is only affecting my head and no help with the pain.
I am realy lost right now but hearing your experience helps me not feel so overloaded.
Thanks heaps.
xxx

Hi there, I've had anterior uveitis (iritis) as well and cannot underscore strongly enough what the others have said. AS and eye problems must be taken extremely seriously. The doctor in your ER sounds like a total git. I don't know what the rules are in Australia, but here, if we request a referral to a specialist, it must be given us. I would print off all the information you can find, including discussions here, and take them to your GP to push the issue. You may not have iritis, but the dangers are too great for your doctors to ignore this.

Hugs,

Thanks for that. Thats a good idea. Will print some of the stuff from here.
I get my medic allert necklace today, maybe that will help me with them taking me more seriously.

Thats if I can get to the chemist. Bad day today, realy bad.
Thank god for everyone here.

The MERSI site has a lot of good info on it too - I also went the printout route a few years back when I was looking for a referral to a specific ophthalmologist! It seemed to help.

I'm sorry you're having such a bad day!!!

I'm sorry you were feeling so lousy yesterday.

Hugs,

Good luck with it. Sounds like you are some tough cookie.

Obviously I, like everyone in this site, will try to use their experience to help you live on. Your children obviously, as is the case with me, are the reason to put on a smiley face when you are in severe pain. Nowadays my eldest girl will get me a heatpack or rub dencorub into my spine. Precious thing is 12 and I have a boy of 9. [edit] Helping with AS is great and I am going to fight it on my terms, but I will also go out on my own terms. Hope this is some help. Apologies to the many Christians out there who believe we should sufffer to the end.

This is the second time I've seen you resurrect an old thread and talk about your exit strategy. This time you are actually recommending it to others. I find this to be inappropriate and harmful. I hope no one follows your advice on this.

Yes Scotty I agree with Holly this site is for support of people with AS and other related diseases NOT a site for promoting suicide and the ways to do it. If you feel this way I am sorry and hope you can come to terms with your illness and live on a good life like many of us do. I am not religious but I'm offended by your remarks.