Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group newbie- general advise please

Lizzie - Delighted that things are moving forward for you in such a positive way.

Behcet's : here's some information
http://www.nhs.uk/conditions/Behcets disease/Pages/introduction.aspx

With eight members of your family diagnosed with AS, then yours is somewhat unlikely to be Behcet's...which is also known as the Silk Road Disease - due to the prevalence of its being found in peoples of that region (Turkey to China.) One of our KA members was diagnosed with Behcet's - he was also of Turkish origins.

Yours sounds like classic AS. ALL the boxes for AS are ticked, and then confirmation is the family. Will be interesting to see if you are HLA-B27 positive or negative. IF negative, then that in and of itself does not mean that you could not develop AS! Relevant papers on positive v negative, authored by the top rheumies - one being Prof KA Khan - who is (interestingly) himself a spondy. For interest, here's a couple of links:
KickAS.org - Pain Map
www.kickas.org/medical/6.shtml - Similarto KickAS.org - Pain Map
Ankylosing Spondylitis as an Auto-immune Disease Caused by Intestinal ... Correspondence to: Professor Alan Ebringer Division of Life Sciences, Infection and ... In general, HLA-B27 negative patients with AS, have a milder disease with an ..... lll-19. 10. Khan MA. HLA-B27 polymorphism and association with disease. Ankylosing Spondylitis > Other Articles > Free ... - Hlab27.com

www.hlab27.com/OtherArticles/FreePublications.aspx
Ankylosing Spondylitis and Related Forms of Spondyloarthritis ... Remarkable Polymorphism of HLA-B27 ... Free Published Scientific Articles by Prof. Muhammad Asim Khan on Ankylosing Spondylitis. 1. .... in HLA-B27 positive and negative patients with ankylosing spondylitis: study of ... Khan MA, Kushner I, Freehafer AA.

Oh. And here's another good AS paper - and see further associated papers in the side bar: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2077878/

Take care -

thanks molly,

i personally feel it is more likely to be AS however coz iv had mouth ulcers constantly they are looking into it, the last 4 months or so iv had at least 6 mouth ulcers on a daily basis they just move around my mouth. i got he dentist reg and im all healthy in my mouth apart from the ulcers, she suggested behets as well.

my granddad is prussian (mums side) whatever that is lmfao. and my dad is italian? i dunno if they can be linked to it i dont have a clue what it is to b honest will read the article. but no one else in the family has it so i personally feel that it is the AS esp given my hist. i just guess they have to rule out everything.

thanks so much for all ur help n support
i raelly appriciate it!

going to get my read on...

AS'ers often have mouth ulcers as well...! Including myself. Not too desp, but v. annoying when in flare-up mode. Mine are in the cheeks, R. side worse than L. Also got them inside lower lip. Beastly things. Prob if you put in a KA search for 'mouth ulcers' you'll find many incidents, much info.

TMJ: jaw. Another nasty one. Fortunately don't get too often - mebbe once a year (odd). Worst was a few years ago now. Could not open mouth properly for over a week. Was a right...!!

Chest pain - jolly ole costochondritis. Again, a fairly common item for AS'ers (feels just like a knife being twisted in the chest - correct). http://www.medicinenet.com/ankylosing_sp...ptoms_and_signs
(snip...) "People with ankylosing spondylitis can also have arthritis in joints other than the spine. This feature occurs more commonly in women (see, 'women' again <LOL>). Patients may notice pain, stiffness, heat, swelling, warmth, and/or redness in joints such as the hips, knees, and ankles. Occasionally, the small joints of the toes can become inflamed or "sausage" shaped. Inflammation can occur in the cartilage around the breastbone (costochondritis) as well as in the tendons where the muscles attach to the bone (tendinitis) and in ligament attachments to bone. Some people with this disease develop Achilles tendinitis, causing pain and stiffness in the back of the heel, especially when pushing off with the foot while walking upstairs. Inflammation of the tissues of the bottom of the foot, plantar fasciitis, occurs more frequently in people with ankylosing spondylitis." (more...)

Can also have Tietze's with costo, and T's on its own (the two are different medical probs). As I understand, Tietze's is inflammation with an explosion of cartilage at the sternum. Nasty wee beastie - mine is like to a quail's egg size - can't put any pressure on it:
http://www.tietzessyndrome.com/articles/tietzes-syndrome-is-not-costochondritis/

Oh. Another useful bit of information and links for you :
http://www.medicinenet.com/ankylosing_spondylitis/article.htm
See the reference to women in the segmented section on that front page - <LOL> (That ole rheumy of yours aint gonna live this 'no women' stuff down...!)

my rheumy said that mouth ulcers are a pretty generic "autoimmune" symptom.

i get them every time i start to flare. they are not my worst symptom, but usually one of my first, along with the dry eyes. So when my eyes start to get scratchy feeling and my mouth starts getting sores in it, i start preparing myself for the oncoming flare.

It's strange, my farther was diagnosed years ago (27 to be exact) and he went for an x-ray yesterday and without the doctor knowing his history emmediately suggested AS on the report. Is there more to it than x-rays?

Belinda - if AS is allowed to get to a classic stage of "bamboo spine" or sacroiliac joint fusion, then there really isn't any question about the diagnosis if you see the xrays, and you wouldn't need any other information. Your father obviously has enough of those clear and unequivocal (can't be anything else) signs.

However, there can be 10 or 20 or more years of active disease before it gets to that point, and in the earlier stages doctors have to look for a lot more clues (none of which are 100 percent reliable) to make the diagnosis. With women, its often even more difficult because the pattern of disease and rate of fusion can be quite different.

I still think in a lot of cases, if they'd just acknowledge that its inflammatory in nature and treat the inflammation, that would be a start. I don't think you have to nail it exactly to start treating the inflammation. could save a lot of pain and suffering waiting for things to get to the point of fusion (if it ever comes). pain and inflammation should be enough to treat. some doctors at least feel that way; thank goodness.

well just in from the royal...again.

been a turn in the books today.

I went blind for 5 mins last weds night (12th sept) but was really busy so trailed off to my drs on fri. he changed me from Naproxen to diclofenic and told me to go to st pauls straight away. (14th Sept)

When i went they did pressure tests and looked into my eyes. they gave me an app for today 21st sept.

Monday 24th i had another appointment with the cardiology dept. he sed my heart has periods of racing and then slowing down. he suggested beta blockers but didnt feel they were neccessary as it wasnt interfering with me in any way. i declined the beta blockers and he discharged me.

went to the hosp at 8.30 am this morning and left at 4.50pm

I was in the eye hospital. and they did a floroscin test- dye into the blood look at the blood vessels. the blood vessels behind my eyes are continuously leaking and bursting. he asked symptoms of when i lost my vision and rushed me round to the acute medical assess turns out i had a TIA. (mini stroke).

the optition ordered blood tests for AS the HLA B27 (so finally 14 weeks later iv had the blood test! and also Bechets disease.
He rang the Rhuemy that had seen me and spoke to him, rang the ward i had been on, the cardiologist and had them all on a conference call!!!!!

took an Optitian.

i was rushed through for vascular tests. the head Rhuematologist at the royal couldnt apologise enough and is seeing me thurs which is his nearest available appointment and will be handling my care from then on. i will have my bloods by then also.

i am also to go back to the optitian 3 monthly.

iv been given 300mg a day asprin.
50mg a day prednisolone
the 50 mg diclofenic
40 mg omeprazole
10mg ametripteline

the TIA team are seeing me on a monthly basis for the first 6 months. theyv also ordered mri scans to see if any further damage... which ironically my bf keeps saying iv gone really scatty recently, havent remembered conversations and keep slurring my words randomly.

so fingers crossed im finally getting there!!!

i only went coz of my eye too as it was hurting and had obv lost vision.

turn in the books. hopefully i get some real solid information.

Quote : "the optition ordered blood tests for AS the HLA B27 (so finally 14 weeks later iv had the blood test! and also Bechets disease.
He rang the Rhuemy that had seen me and spoke to him, rang the ward i had been on, the cardiologist and had them all on a conference call!!!!!

took an Optitian"

Brilliant. Good for that ophthalmologist. It is recently acknowledged that close inspection of the back of the eye, under dilation and with contrast, can/should/will show up TIAs. So very pleased that you saw a *competent ophtho. Great he had all the other inept doctors right on the line - literally as well! Good job (one has to laugh, yes? BUT, pity those patients who are treated by those inept incompetents. Desp for patients). Shoot, how much damage have they done over the years?

Horrible for you that it is a TIA that had to bring you to this. But at the end of the day, one can only be pleased at a positive outcome - they are listening - and covering all aspects. Phew gal. Now, just take care. Continue to be pro-active and be informed.

(No heavy lifting. No standing on yr head!)

Lizzy, I'm glad to hear that your case is being looked into so closely, now. It must be such a relief to know that maybe answers will soon be forthcoming. Whether or not this proves AS, or finds something completely different, you will know and can take steps toward feeling better.

Do your research, stay pro-active, and keep an open mind. Learn how to communicate effectively with your healthcare team, make sure you ask questions and then you can make informed decisions about your path going forward.

I`m glad you got into to an opthie - even if you did delay on it. (Imagine you`ve just been whacked on the shoulder.)

Warm hugs,