Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Rheumatologist appt. dissapointed, scared.

hey there,

Praying for the best you can find some answers.

Tim

Hi, sickofit:

mri is not the way to image inflammation; a contrast nuclear bone scan would be much better but perhaps X-rays will be of some help.

B27 with symptoms means EVERYTHING--and You have had characteristic AS symptoms for over three months so You qualify for Pre-AS and it is absolute. The rheumy might be cautious, but just keep things straight in Your own mind. I would not pin my hopes on any physician, and if You have insurance that would cover the biologics this could be a good option, but only for treating the pain and LSD/NSD better treats the disease (and I opt for antibiotics--much cheaper and safer than the other options...and they treat the disease directly).

Good Luck,
John

The stress of auto immune diseases! I know it sucks butt, but we have all been there auto immune issues are hard to prove. You have to have specific qualities and I believe a certain amount of them! CRAZY I believe another way to prove AS is thinning of bones on xrays and/or mris. When they were first unsure they found thinning in my pinkie finger. Which a few other drs have told me the same. I now have many more but that was my beginning and it took yrs to even get there. My only suggestion is patience and humor! Celebrate both of those often and surround yourself with those kind of people! It will be ok! I promise. Its just hard to find a place for all this crap! Be strong

hey honey;
don't worry too much about the thigh rash; my brother and i have both had thigh rashes connected with AS that were really harmless, just a side effect, and my husband has rashes all the time that aren't anything to worry about. Don't freak yourself out about something until you have a reason to.
-Bridget

aloha sick....

well...humm...the understanding that you're not alone is but slender consolation.

rheumies use several/many different standards to arrive at a diagnosis of AS...
yours is not like well and truly amongst the enlightened...he's not a neanderthal
but he's got some iffyness.

there is a pre AS diagnosis...called 'undifferentiated spodlyarthropy' and/or
'b27 positive spondylarthopy'...
fundamentally, it means the goober is waiting for some sort of demonstrated structural
damage to your SI before he'll name the monster for what it is.

you mention a 'rash'; have you ever had inexplicable eye problems????????
eye problems are yet another part of the nexus, very serious and , as mention, are
consider by many as disponsive/supporting proof of AS diagnoses.

xray btw will not...NOT...NOT show inflammation; they will show structural damage.
and as mentioned by others SED perticularly and CRP somewhat are for many of us
only putative indicators of inflammation...you should most definitely have the xray done
because if you do show some structural damage then the diagnosis will be easier even
for your less-enlightened rheumy. btw...asside form the depths of somewhere, i am
continually amazed that doctors will do 'tests' to find out if you're 'in pain'...a test doesn't
prove inflammation the complaint of pain is proof.

i am an enbrelee...it's a therapy not a cure. but for many it works wonders...the most
advanced rehumies do in fact often recommend enbrel (and other aTNF meds) for folks who are not yet totally screwed up because these meds hold the promise (your mileage may vary) of forestalling that downward spiral of damage and deterioration.

different insurance companies do have different standards for approving meds like enbrel
most are going to inquire about what meds you've tried and found to be a failure.
no one thingee is the answer to everything for everyone...that's about the only thing
we can all agree upon.

good luck
all the best



i do also love truffles and the little doggie is cute too.

Thank you far all of the feedback. Yeah, I do have a normal cpr and sed rate. I just went for the xray and the MRi is next week. I had a bone scan done in feb and nothing there.
I got copies of my medical records from him. I am always interested in the records, as they jot down their thoughts and you dont always hear them in the appt.
He wrote down:
possible spondyloropathy. Symptoms that suggest enthesitis, chronic stiffness. HLA b27 is not positive by itself, but we will try to get further evidence of spondylopathy. If the MRI or Xray is disgnostic of spondylitis then we would give her a trial of anti-TNF agent. We may consider that even if radiology studies are not revealing.
NO definative criteria for connective tissue dieases. I doubt she will turn out to have vasculitis. We may consider at some point a trial of Paquinel.
He also wrote that I have myofascial pain that could be evolving fibromyalgia or potentially related to neuropathy.
Well, there are a few ideas! I dont see him for a few months now that I am going to the Mayo, so we will see what they come up with... so far it could be a possiblity of spondylaopathy with fibro or neuropathy in legs....
I am anxious to see what they say... scared at the same time. I just pray this doesnt go on for ever.
I will let y'all know what to make of the xray and mri.
thank you for the thoughts and yeah, truffles are yummy ... just doesnt seem right to say that now that that is the name of my dog :-)

Just want you to know I am sorry you are having so much trouble and are in so much stress - physically and emotionally. I remember (I really do remember this that far back;not much else ) how much I wanted a diagnosis and we spent 10 years looking for one. I do feel for you.

As far as your thigh pain. I have so much thigh pain but according to my rheumie and the Pain Management Dr. at the Spine Hospital, it originates in my back. Just putting in my 2 cents worth.

I haven't gotten to be here for a couple of days and I have forgotten when your Mayo appt. is. I hope it all goes well for you and you get some answers. I was very pleased with my trip there and the fact that (at least 6 years or so ago) that I saw 2 of each specialist that I saw so I got a second opinion with each of my problems. You just can't keep from feeling better about things.

I think of you often.

Hugs and Blessings.
Possi

read your rheumy's report. it actually sounds very promising to me, as i'm in a similar situation.

as for myofascial pain. right now it is what i am mostly dealing with. my trigger points got out of control and i can't sit and i can't lay and thus i can't sleep and its really a total nightmare. the pain has messed up my stomach and bowels big time too. myofascial pain is one of the most painful pains i have, it rivals the full out muscle spasms, so don't let anyone downplay that pain. and yet, it isn't fibro. yes, triggerpoints and myofascial pain can be that bad. right now ultrasound is the only thing that is saving me at all. and hopefully the triggerpoint injections will do the trick as they have in the past. only sharing this so that if this is part of your pain, there are things PT and physiatrists can do to help. just be careful if you go for PT (some of the things that are supposed to help make my trigger points infinitely worse (pressing on them, stretching them, heat). what helps some for me is ultrasound and ice and what helps the very most are the triggerpoint injections, that's the only thing that eliminates them for me, but i have so many, and you have to get them very precisely, and some are too deep for them to get it seems. but when they are really bad, it can be a long road, but hang in there, that's what i'm trying to do, some moments i succeed and other moments i'm convinced i just can't take it anymore, but ultimately i know in my heart we will come out the other end of this ok.

Thanks Possi, Sue and Ben.
Yeah today was rough. It was better yesterday. I had tremendous leg pain and the heels and sides of the achilles were a killin me!!!
The part of the report that was promising was that he said we may consider a trial of an Anti-TNF agent even if radiology reports are NOT revealing. So in his plans, he notes that we are considering a trial of anti-tnf therapy and potentially Paquenil. We may need an EMG-Nerve conduction study.. there were some other things. But this at least shows that he is considering these things. If the Mayo doesnt do a nerve conduction study, I will have him order one for me here. I would be surprised though if they didnt. Also, I better start reading about these therapies if he decides to put me on Embrel as that is the one he mentioned.
Sue, I dont know what is wrong with my legs, I only know the deep aching pain I feel every day, and the difficulty it is with the foot pain too. I pray that you get some relief for your myofascial pain as well.

thank you jess

your welcome and thanks for your kind thoughts as well.

one other thing i've had to contend with, i get edema really easily from nsaids, the cox 2 inhibitors like the celebrex, and a even a statin last summer. i was on vioxx then celebrex then vioxx then bextra then vioxx for about 3 years before one of my doctors and i realized that i had low level non pitting edema that was making all the inflammation infinitely worse. its a hard thing to detect at that level but its what really screwed up my feet and legs. just another thing to consider. most people don't respond the way i did, but even now, my current rheumy had me try aleve, and it really does work on the inflammation but even one pill and i can start to have swelling in my foot, nothing to see, just feel it when i take a walk, and my knee gets really stiff after walking and in the AM and now i know that its the start of edema. as i said, just another thought, which may or may not apply to you. it also made it so my SI just stayed inflamed all the time, but mostly it was the feet and the legs.