I am not entirely certain if I am approaching this correctly—I should probably head over to Mount Sinai to get everything checked out—but I was hoping to inquire about early pregnancy blood tests. Does anyone happen to know how early one can actually have their blood drawn to ensure the results are, well, 100% reliable?
Anonymous said:A close friend of mine went to Sunrise for a brain MRI, and they found a tumor. She ended up having surgery at the Mayo Clinic, but because the tumor is in such an awkward spot, they were only able to remove about 20% of it. Two months after the surgery, she went back to Sunrise for follow-up imaging. Both times, they only gave her one single copy of the scans. Right now, she’s undergoing radiation therapy at a specialized cancer center. By total coincidence, I reconnected with a high school friend who actually works in the US at Johns Hopkins Hospital, and they are currently deep in brain tumor research!!! She is surrounded by top-tier experts—researchers, neurosurgeons, you name it... After consulting with them, they’ve expressed a real willingness to review my friend's scans, offer their expert opinion on a treatment plan, and might even see her in person for an evaluation. Here’s the catch: I need to get her imaging sent over via digital media (like a CD) or provide the originals. When my friend asked the staff at Sunrise if they could just burn a CD with her head scans or print out extra copies, they told her it was impossible. Since she only has one set of images, we can't just hand them over; she needs them here for her ongoing treatment (plus, we don't want to risk her being left with nothing). So, my questions are: Does anyone know if MRI scans can be copied, or Is it actually true that it's impossible to get a CD or additional copies???
Thanks in advance for any help!!!
Maybe she should give them a more detailed explanation regarding why she needs them... I wonder, did your friend experience any specific symptoms beforehand, or did she just decide to go in for an MRI on a whim?
Maybe they should just ask her to explain exactly what she's looking for... Did your friend actually experience any symptoms beforehand, or did she just decide to go in for an MRI out of the blue?
Was your HLA-B27 positive? If so, that points toward ankylosing
Steven Booth65 said:So, I’ve been dealing with this diagnosis for about five or six years now. It’s a constant cycle—back pain here, back pain there—but mostly, I just feel completely wiped out, weak, and totally drained. There was a stretch where I actually tried to stick to a regular exercise routine, but then I just hit a wall and quit because, honestly, it felt freaking impossible. Right now, I’m seeing an immunologist over at the Mayo Clinic. I can’t tell if she’s actually any good or not, but she’s constantly ordering one new test after another. From what I can gather, my immunology panels have been fine, but my liver enzymes—AST and ALT—are running high. That’s the latest development, and now I have to go down the rabbit hole of investigating why those levels are spiked. I’m low-key terrified it might be a liver issue, though I’m not sure what else could be triggering it. This past month has been absolute hell; the spinal pain is brutal. I don't wake up feeling stiff per se, but I just feel like I've been physically torn apart. I don't have all the "textbook" symptoms, but my tissue typing showed I have that HL... whatever it is, some marker tied to this whole mess. For me, the muscle aches are way worse than the joint pain, and I honestly feel like I’ve got fibromyalgia too, since I check every single box: exhaustion, muscle pain, anxiety, heart palpitations, gut issues... the whole nine yards. I’ve tried talking sense into two different doctors about how this all connects, but nobody takes my suspicions seriously. I guess because they view fibromyalgia as this "minor" thing, they just brush it off. Like, okay, thanks for nothing...😠
You say you aren't interested in taking heavy-duty medications—like steroids or Sulfasalazine—but then you're using Tylenol, which is also quite potent; I suppose I don't quite see the distinction there... You didn't mention whether you've been running a fever or if that joint stiffness has started setting in yet. I honestly know very few young people who deal with those specific symptoms, and I find that part rather intriguing.
What kind of opioid is this Tylenol thing anyway? Does it actually help take the edge off the pain? Where exactly are you feeling it, and have you started feeling any stiffness yet?
Is there any brain fog involved—and are you running a fever?
Amy Fowler5 said:Gregory is actually a top-tier rheumatologist. And he doesn't just hand out Voltaren; he prescribes whatever specific therapy is required for your actual diagnosis. I live with ankylosing spondylitis myself. With all those awful, nagging pains... In my opinion, when dealing with any kind of rheumatic disease, getting some treatment at a spa resort is absolutely vital.
So, what kind of treatment are you actually taking???? And if it isn't too much of a secret, how old are you?
The doctor over on Washington Boulevard is Dr. Gregory—but keep in mind, he’s a rheumatologist. I suspect his prescription range is pretty limited to stuff like Voltaren or Ibuprofen; it seems to me that only immunologists have the authority to prescribe the heavier-duty medications. To be honest, I went to see him myself, and I wasn't exactly blown away by the experience.
Raymond Harris11 said:granitecanyon2, what specific diagnosis were you given? What did they tell you was causing all that joint pain? I think my son is dealing with something similarly vague. Does anyone happen to know how an Ankylosing Spondylitis diagnosis is actually confirmed? Is an X-ray required, or is there some other way they determine it?
From what I understand, they usually diagnose ankylosing spondylitis far too late—it's a common issue. You typically need to test positive for HLA-B27, and they really have to see evidence of spinal fusion on an X-ray... plus, based on how you're describing that lower back pain, it sounds like it's heading that way.
granitecanyon2, I know those pains all too well.... Do you deal with any shortness of breath, or maybe find yourself getting winded quickly when you're walking fast or heading up stairs?
Ever since I started taking Medrol and Sulfasalazine, things haven't been quite as unbearable—though, I wouldn't say they're great either—but I still struggle with this constant low-grade fever around 99.5°F, which I just can't seem to pin down for anything for three years now,,,,,,
I’m currently seeing Dr. Anica for my Rib issues, though everyone seems to insist that Dr. Bosnic is the one to go to.
I suspect that rash might be a side effect from those medications—but just to be safe, you should probably go through the list of side effects on the label; honestly, they list pretty much everything there is
granitecanyon2, do you happen to have ankylosing spondylitis?? Where exactly are you feeling the pain? For me, it’s my entire lower back area. 😠
Does anyone happen to have a recommendation—maybe a name or some contact info—for a private endocrinologist in the Chicago area? I'm looking for someone specificdiv>
I’m currently on corticosteroids myself—I actually know a guy who takes them too, though I guess he isn't seeing much improvement either. Regarding your son, what exactly is his diagnosis? That term you used is a bit broad, don't you think?
Everything seems fine—honestly, I spent three weeks digging through the archives at the Library of Congress just to be certain, but I couldn't find a single thing out of the ordinary. It’s all exactly as we left it, I guess.
I’ve been dealing with this for nearly three years now—three whole years—and they still haven't figured out the root cause. Honestly, I'm starting to think this entire search is just a massive, futile exercise. It’s incredibly draining, both the condition itself and everything else that comes along with it... but I suppose I just keep pushing forward somehow.
Everyone is still kicking and breathing... though, if that temperature isn't actually bothering you, I suppose there's no real need to exhaust yourself digging through all those searches... personally, my back and neck are absolutely killing me—to the point where I can't even get a decent night's sleep—and it’s certainly not just your typical lower back pain, so I'm not entirely sure what kind of discomfort you're dealing with myself.