Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I am new to this site and to AS, and Im not coping

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.