Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group new rheumy

Hello, my friends. I have a lot of reading in order to catch up with you, but know you are in my thoughts and prayers. Life just gets too busy here to be on-line much. My boys expect to go to the pool every day, so they are good swimmers and tan. Ahh... summer for kids!

My rheumatologist of one year is retiring from the military, so I had to get a new one. I saw a civilian contractor at an Army hospital last week. I believe he is from south Asia somewhere, so I'd like to know where he studied (you'll see the relevance in a minute). He starts the visit walking me to the back, "You don't look like you have AS." I thought, "Oh great!" He remarked on my last name and said, "Oh, you are Scandinavian, that is why you have AS." Interesting...

He has 18 years of experience and know a LOT about AS. He asked all the right questions about the seemingly unrelated symptoms that are assoc. with AS and says, "Everything is connected." When he asked what I am treating it with, I showed him my IBS No Starch Diet book by Carol Sinclair. "Yes, many AS patients have lesions in their intestines..." He not only knows about the NSD, but seems to endorse it! I was so astonished I didn't ask him how he heard about it, if he recommends it to his patients, etc. I don't have to try to explain or justify my diet therapy. Wow!

As he does a brief exam, I have to touch my toes, of course. "This is great!" when he sees my range of motion. He is pleased at my lack of visible disease progression. Recommends swimming and volleyball (to keep the back bending backwards!) for exercise.

I have seen three rheumies in three years and each one has a test that they feel is better than any other to tell them what my joints are doing. The first ordered the bone scan where I had to drink the radioactive stuff (sorry, can't think of the name right now). The second wanted a very complete series of X-rays. This one can't go on without an MRI and can't understand why one hasn't been ordered yet. I have an MRI appointment about a month after seeing this doctor. So my question, if you managed to read this far, is this: is there any agreement on which test will definitively tell us about joint damage?

My current status is good. Probably could be great if I could give up sugar. My feet, knees and shoulders don't respond to the NSD, only the back and GI symptoms. I'll take any improvement I can get. If we could finally get the rain that has been brewing forever, I think the pressure change would help immensely. I am grateful to be doing as well as I am and try to stay active.

Thanks for your friendship and all the information that has greatly improved my life.

Be well,

Ann,
It sounds like you have found a good rheumy, good for you. I don't know which of the tests are the best for determining if you have AS. I think the MRI is more advanced than the other two, so might give a clearer picture of what's going on. It will be interesting to hear what he has to say after seeing the MRI.

hey i had a new rummy once.

this was after being diagnosed AS and receiving treatment for over two years on various medicines/biologics.

the trouble with new rummies is that they have to prove everything over just for themselves, so get ready for the works again, MRI's, X-RAY's, blood work, and then,
then they just might change your diagnosis and send you into the world of the unknown diseases, like they did to me. still don't know what i have , but they sure are ready to treat it.!!!!!!!!!

just remember that the first doc you saw did all the tests and said , what??.
then the second doc saw you and said , what???.
if you go to a third doc , guess , what????

he will give you a different diagnosis than the first two.

don't give up hope they all have an "opinion" as i am told and they are all
different, sometimes they change the diagnosis on themselves. this will really set
you back.







good luck to you
and have fun.

Good to hear from you Ann. Sorry can not help with question, I have had several rheumies as well and gone through many different styles. Sounds like you have a keeper.

Enjoy the summer,

Tim

I've only had one rheumy (been going to her for more about 11 years now). She was the one who discovered I had AS which not only helped me, but my dad as well. I'm glad you're new rheumy seems quite knowledgeable and competent in regards to AS.

Based on personal experience, wouldn't x-rays be the best judge of the damage on your joints? It was my x-rays that tipped off my rheumy to my AS as the damage was quite evident, so I suppose I may be biased. My rheumy does request MRI's sometimes, but really rarely. I think my last MRI was more than a year ago. Externally, it can be difficult to definitively tell the status of your joints since even though AS may not be active, if there was fusion, then there could be some pain there as well.

Well anyway, cheers to you for being able to get such a great rheumy. Hope things keep getting better for you

bluboi

Hi Ann,

You are lucky one

The radioctive test is most probably scintigraphy. As I understand MRI will show bone damage and scintigraphy indirectly where you have inflamation.

Good Luck

Thank you all for your replies. Sorry it took me awhile to get back--we were painting the dining room yesterday after the usual swimming, etc. I am grateful to be able to keep up with my busy family's schedule. We are so glad for a little rain in our drought today, too. My joints are complaining a little less as a result.

I forgot to add about the diagnosis, so thanks for reminding me, John. The first rheumy didn't want to commit to AS. He saw "fuzzy margins" on my SI X-ray and said I have "spondylarthropy." I'm not sure what the second doctor wrote down in my chart, but he said, "It definitely sounds like you have AS." after interviewing me. This one says "without question" I have Undifferentiated spondylarthropy even without seeing the MRI. He only had my chart with previous radiology reports from the X-rays and lab results. So there you go: all agree I have some kind of spondylarthropy. I'm sure many more of you have had a similar experience.

Yes, each doctor has to go through all the exams again. I've had the HLA-B27 come back positive 2 times, just to make sure. Ah, the joys of moving frequently!

I hope you all enjoy a pleasant week and Happy Independence Day to all my fellow Americans!