Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Reminder (s) Get copies! Get Copies! Get Copies!

Hello Everyone!
I know it has been ages since I have posted. Life is moving on. Some good ways, some not. But I recently went through some medical tests, scans and whatever else they could think of! (I know you all have been there before!) But I wanted to remind people that when you get any tests, scans, MRI's, blood work, etc done, that you ALWAYS get a copy of the results. (I learned that the hard way when I was first diagnosed with cancer 6 years ago)
I had been very sick off and on all spring, pain..numbness (to the point of not feeling most of my back, down my legs and couldn't feel 8 out of 10 toes).. falling over when I stood up, (a lot of different symptoms that got worse over the summer) They originally thought I had MS, just "know for a fact" that it was MS. But in checking my Vitamin D levels (the last of long months of other tests) they found out it was dangerously low. Since starting on 6000IU's of D3 a day, I can't believe how much better I feel. So the first reminder is GET YOUR VITAMIN D LEVELS CHECKED!
But this other scares me. The doctor I had gone to who just knew I had MS told me "I do not believe you have AS" --something we have all been told before right??-- She said that x-rays should have shown changes throughout the years and since they didn't then I couldn't have AS. (ummm lady? you never ordered x-rays.. everything but.. but no x-rays) So to make a long story even longer.. She called to tell me the results of the Nuclear Bone Scan that was done of my back showed that "everything was normal, there were no abnormalities".
But since being burned by a bad doctor before, I always request copies of all tests done. Thank God I got one of that "normal" bone scan.
The report shows abnormal tracer activity in the lumbar spine. And increased radiotracer activity in the T10-T11 facet joint/10th costovertebral joint. With increased joint remodeling of the same areas.
Showing this to my Physical Therapist, she said "Well you have AS, those show signs of progression" And she said she was glad I had showed that to her because there are certain exercises I should NEVER do with those areas affected. She said the T10-T11 are the most common area that if severely injured can cause paralysis.
Gee! Thanks Doc! If I had just let her ego get in the way and not had a copy of those reports I could have been in a lot of trouble. I believe that she just didn't want to admit that ok, maybe she had made a mistake in telling me I didn't have AS.
So please get copies of everything. Be proactive in your own care. Ask questions and don't let anyone bully you into fitting in with their ego.

P.S. Since taking the Vitamin D3 for the past two months, most of the feeling has come back in my back and legs. Still can't feel my toes. And I can stand up without falling over. But since the feeling has come back in my back, the pain has come back with a vengeance with it. But I am thankful for being able to be in the pool and that I have a recliner to sleep in. (My dog is enjoying my queen size bed all to himself for the past few months)

I hope everyone is well and I know I need to check in more often.

Take care,
Pam

Hey Pam
I just wanted to second the notion - love that D3! Glad you are feeling better!

Yes, I'd definitely go with the getting copies bit and taking responsibility yourself for ongoing monitoring.

I too had what was reported as a "normal" MRI by a neurologist, but my GP has looked at the report and doesn't think it is at all normal from a musculoskeletal point of view. If I hadn't passed on the report, he wouldn't have known. I've now got the actual MRI scans on CD so will be trying to get those reviewed.

I've also just had an SI xray that my GP is confident doesn't show any evidence for the pain and disability I have as it only shows "minimal sclerosis" and she has the idea it should show more than that to be significant. I'm in the process of getting a copy of that xray to be reviewed by someone who understands AS, because with the history and family history I have "minimal sclerosis" could be grade II sacroilitis and if it was, then that could push me closer to a diagnosis of AS

I also discovered by accident that my GFR (kidney function) is really borderline (55) and not only did no-one tell me, but no-one has seen the need to check this regularly. As lupus has been a possibility for me in the past, AND I've had a skin biopsy that showed amyloidosis, I think kidney function is something to be a bit more cautious about. I'm now asking for annual checks of kidney function.

It definitely is even more important to get copies if you are seeing multiple doctors - you just can't rely on a one page referral letter summary to give over all the relevant information - especially if the referring doctor doesn't know what is relevant.

Thank you for posting this, welcome back and nice to meet you!

I recently had an MRI and have a copy of the report. My rheumatologist ordered it, but it didn't really occur to me to have my GP look at it. I'm going to drop the report off at his office today and ask him to call me. I've been bad about copies. I got a lot of copies when I had cancer, but then I handed them over to my new oncologist when I moved.

Your kids are cute!

Welcome home Pam

Pam.

Welcome back, Pam.

Warm hugs,

yes i agree! but what a pain it is sometimes.

the scans are pretty easy. i can call up the imaging places (2 i go to) and they give me the CDs/DVDs. one gives me any i want for free, their mine. the other place only gives them to me if i tell them what doctor they are going to, then technically that doctor is supposed to return them when done......i just assume as long as we have problems, we're never "done". but really getting the disks of the scans is the easiest.

i've called the AMC labs about getting copies of my blood work. they claim they can not give me the info, must get it from the referring doctor. even if the results are old and i don't remember either which doctor did it or can't track that doctor down. i guess the laws for sharing blood work with patients is different than sharing scans, though not sure why?

it used to be pretty easy to get reports. i'd just ask my GP when i went in. could see him within a few days of calling. and he'd copy whatever i had had done since i had seen him prior, no matter who ordered it. so long as i asked. plus he'd have all my blood work results sent to my house as well. the new GP says that he is not allowed to share reports with me. so it is going to be a lot more effort to contact all the various doctors and testing facilities but i'll still do it. i know there are laws that say they have to give us our records if 1. we request it in writing and 2. pay for it. but really to do it for every thing, it does get to be a lot of work.

recently i signed paperwork saying that any of my doctors has electronic access to all of my records which now are mostly electronic. i don't understand why my doctors can have access to information about me but i can not? i mean its about me! it shouldn't be so hard to find out information about me! i'm sure there are arguments that sound logical, but i really do think if a patient wants to see his or her information, it should be just as easy for us to see as for the doctors to see. hopefully with everything becoming electronic, electronic access will also become available to patients.

just wish there was an easier way to get, gather, access my information. i think i have most of the old stuff now, but its been a lot of hard work to get it all. and i know i'm still missing some stuff, still a lot of holes.

Hi, I work in a hospital. You do have a right to see your medical records. But yes, you do have to sign for them, sometimes the doctor has to approve it and you will most likely have to pay for them. If you want more info on your rights look up HIPPA, its all about your right to privacy, but honestly its more the right ofthe medical facility to cover its own [*bleep*]. Problem is we have become such a litigious society that they make you through a million hoops so if there is a screw up, well, like I said its a CYA kinda world. I wish it wasnt so, but nurses spend as much probably more time charting what they did with a patient, than actually caring for the patient.

Oops went a tangent there, but you dohave a right to your medical information, as long as you sign a Release of Information form.
Good luck,
cs

You should be able to get copies of your lab results by signing a release. And I think we've had this discussion before....is there some weird thing in NY that makes this dang near impossible? With all the changes in health care...seems like this will change regardless of what they want in NY.

Maybe one of the doctors you like (and likes you) could grease the rails for you to get these.