Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group New,and searching for advice.No Dx yet

WELCOME (to the club), LuvlySerenity7:

Yes, You have AS.

Sorry.

It is just that simple from Your constellation of symptoms.

I would get the HLA B27 test done, if possible (a positive result means You absolutely have AS and a negative result only means You do not have ONE of the many genes responsible for AS, but You almost certainly still have AS)

NSAIDs made me worse, long-term but were great temporary relief albeit not worth the consequences.

Good luck with treatments.

A physician who cannot diagnose AS can open a book and treat (mis-treat) AS...well through "benign neglect" You will eventually have SIJ fusion. The focus should be how to AVOID that damage in the first place!

NO rheumatologist can do this for You.
Only YOU can,

John

hello, welcome!

sorry that you have been in so much pain!

if things don't show up in the xrays, MRIs, it could simply mean that it is still early on in the disease progression, instead of AS, maybe undiff spondy (that's what i have and so far, all the inflammation, and not a whole lot of joint deterioration, some, but not enough to say AS, but haven't had the proper MRI of the SI joint done yet).

as for the HLA-B27 gene, while 90-95% of people with AS have the gene, still that means 5-10% of people with AS don't, and only 20-25% of people with undiff spondy have the gene.

you mentioned hypermobility. you could look up EDS.

http://www.ednf.org/

i know a bit about that because when i go to the doctors for the torn tendons and ligaments that result from the inflammation, they test me to see if i might have EDS. but i am not hypermobile. but it is one of the first things the docs will test for me and then rule out when they all see that i can not do all the "double-jointed" things a person with EDS can do.

As you see you have come to the right place. All that you explain sounds classic. I would definately get a referral from you GP for a GOOD Rheumatologist and start from there.
Cindy

Hello all and I CANNOT THANK YOU ALL ENOUGH for all your support and information. I'm at work at the moment and only quickly perused the replies as times is limited!
I have to tell you, I sit here with tears in my eyes... maybe just because I finally have Someone who I can talk to, and who understands how frustrating this truly is.
I will come back this eve and do a proper response to all as it means so much to me that you all have taken time to respond.
My job is a physically demanding one.I cannot use a cane as I drive machinery and use a shovel and pitch fork, and cut and haul away tress for much of my living..lol Its darn tough now though!
MRI booked this wed.. Not sure what its looking at, but I'm also seeing my family doc BEFORE I go to the MRI, and from the little bit of info I've seen it takes a certain type of MRI to detect certain changes typical of AS? Not sure if I'm correct, but I would like to ensure that it will be a proper one that I'm having done so as not to waste time. It takes FOREVER here in Ontario anyhow just to get in to have an MRI done..Months in advance if you're lucky.
Oh, and quickly, I did tell my Rheumy in Newmarket Ontario about my hypermobile joints at one appt (of two) and was told that had nothing to do with anything!!? Yes I see online iformation that does in some way link or can link the two?

Well, hope your all doing well and taking care, and thank you all so much from the bottom of my heart for all your support.
I'm so very thankful.

Tracy

OK. MRI - Saggital STIR, Tau1 & tau2, fat supression. These are all different scans/slicece techniques. So, GOTTA be Saggital STIR frequencies. Otherwise not woth` doing.

Hypermoblity - quite usual with AS. I 'was' hypermmobile,
means that I have been *able to 'keep' fairly mobile in spite of haveing a crap spine with sctive inflammation and spinal fractures etc etc. So, don't let em fool you nor 'get' to you. Chin up - 'Courage, mon brave!'

And, heigh. Don't have to respond to each an all...or we'll 'never' stop thanking each other...<LOL>

Take care gal - heck, an nice to meet `ya. (((HUGS)))

Hey Tracy...
Another Tracey here...and I'm likely a neighbour. I see a Rheumy in Markham but I live equidistant to Newmarket or Markham. I have many similarities in pain mapping to you and my Rheumy, while he can't confirm AS, has not yet ruled AS out. He will only confirm that I have an Auto Immune/Rheumatoid Arthritis at this time. I am B27 negative, but Doc has assured me that does not prove against AS, and there is no fusion showing on MRI's as of yet. He says that could just prove we are early in the disease.
Currently has me on Sulfasalazine and Surgam with regular blood tests and visits to keep up on things.
I have left SI pain and stiffness, shoulder pain, right heel pain (recurring Plantar Faciitis), sporadic lumbar and thoracic spine pain, frequent neck pain, and when flares are particularly bad all my other joints (hands, feet, elbows, knees) join in.
As the folks here have said, you have the right to know your test results so ask or get copies. If you are not comfortable with the relationship you have with your Rheumy find another. I know it seems like it will just add to an already long drawn out process, but rest assured, nothing will happen fast anyway, and it will only serve you better to have a Dr. you can work with.
It's frustrating, because it requires a ton of trial and error. It has almost driven me and my husband crazy. It seems like they should be able to get to the bottom of it more quickly, but I have learned that if they are investigating, and trying things they are at least working toward the goal. It requires a lot of patience, but you should at least feel confident in your Doctor's efforts.
In the meantime, this is a great place to find information, ideas, answers, guidance or to just vent.
I hope you'll find some help with pain management as you clearly have a busy, active lifestyle to get on with.
The folks here are the best. Read on...you'll get some great advice.
Welcome. Feel better soon.
Tracey

Hi Tracy and welcome to KA from another Canuck!

As you've already been told (but I believe it bears repeating), women do not always have the 'classic' presentation of AS and as such, doctors far too frequently don't recognize it as AS. Also, it can take upwards of 10 years before women get damage evident on an x-ray.

I did have a classic presentation, but it still went undiagnosed for 20 years before I had the damage showing on my x-ray that set me on the road to diagnosis. In fact, I had what is considered by some to be the first sign of SI involvement (sciatic nerve problems) starting in 1987/88. I went into full blown AS flare (including iritis) in 1991/92. I wasn't diagnosed until October 2001.

I'm glad you found us so that you can get good information and feedback from those of us who've also experienced much of what you are now.

Hugs,

Hi again, just felt I should add this one little thing.
My hubby had to go for a medical yesterday for a new job and was talking to the doc about me. How rude LOL.
Anyway the doc wondered why it took so long to be diagnosed, (roll eyes) don't we all.
The docotr then went on to explain a simple little test to see if you have AS or not. This is what I thought was worth sharing.

You sit on the floor with one leg out straight and place the other ankle on top of the straight leg on the thigh and then press down on the knee of that leg. If there is pain in the SI area when pressing down then you definately have AS even if changes have not been noted in the SI yet. You repeat with the other side and can easily tell what side is the worst.

I can even get one side into that position.
Not sure how reliable this test is but this Doc seemed pretty full on about it. Oh and another good thing is he has recently found out about LDN and was very interested in my hubby telling him my experience with it.

Thought it was worth sharing anyway.
Take care

Trish
xxx

Hello all and Warm *hugs* for all the welcoming and information.
My apologies as I haven't had the chance to sneak the pc from my daughter for more than a moment, but I would like to ask a question in the meantime if I may?
Is it common for symptoms and pains to change?
I know that I felt a certain way when I feel I must have been in a "flare"..but since then, the pain is certainly still there, but different..and moving to other areas as well. Is this a common occurence?
Sharing your stories may help me understand a bit better.
Mri and doc appt tomorrow.. crossing my fingers I can stand up for myself and get over the intimidation I feel from my doc when I'm told it's fine.. your just going to have to learn to live with it, and it's an age related thing!

Big warm *hugs*
Hope all are feeling as well as can be expected...
Glad to have met you all, even though the circumstances suck! lol

Yes, pain moves around, moves from place-to-place from day-to-day. No two days the same.

As for the MRI - YOUR body and they aint there to bully you. IF they 'do' bully you, tell em, firmly but politely, that you don't care to 'be' bullied. As for the 'I am God' syndrome, Ha! Think of em naked and sitting on the pot...soon brings em down to the human level - another one is to imagine em as babies in a soiled nappy...!! <LOL> Also, remember, that it is YOU who pay their wages. But for patients they wouldn't be there, at all. So, don't take any of their BS.

Of course you can stand up for yourself - the more intimidated they think they are makaing you feel the more they'll indulge their vile attitude. So, you get your attitude, called: 'Not putting up with now from you lot!' Be polite but VERY firm. They'll come to heel soon enough. Also, you can complain to the general medical councel - or whatever it is called over there.

Can yu bring someone in with you? A chum, member of family? A neighbour - anyone. So that yu have a wittness. Always good to have a wittness - they tend to be better behaved when there is a wittness there! Otherwise it is yr word agin theirs and being doctors and yu the patieint, they just intimate that 'the 'patient' was unbalanced etc etc'. Have no time for 75% of em. You gotta fight yr own corner, sigh.

Go well - ensure Sagggital STIR images or otherwise a waste of time and money, standard MRIs won't show owt. End of story.