Where to get a medical screening body scan or something similar?

November 21, 2024 1:54 PM

I've been in physical hell for a couple years after much milder issues for about 5. Doctors sort of shug and suggest maybe Fibromyalgia despite saying a lot of my symptoms don't line up, do yoga, keep moving, try this diet or that. I went gluten free, anti-inflammatory , etc. Doctors aren't concerned but I am concerned it could be something bigger and want to rule it out. Where can I get a private pay test for the cheapest?

I feel like I have the flu, have fatigue so bad I have like 6 good hours a day, abdomen pain, rib cage pain, back pain, pain around my leg pain, all over tenderness, lost a lot of my hair and wear a kerchief now, and if I over do it, I'll be paying for it for days.

Finally my PCP listened. 3 requests for MRI from my PCP were denied then she retired that month and now 8 months later I can't find a PCP.


** Can I just fly to some country, and get a cheap body scan, so when I wake up in pain I don't ALSO have to worry that it's some kind of cancer...



[backstory. Doctors for 4 years told my mom her issues were this or that. Just "pay more attention when you are eating" (cancer had pushed her throat closed so she was choking but they didn't see that on the swallow test), or the pain is osteoporosis - take vitamin D. Well, a second trip to the ER they finally scanned - stage 4... both parents had 3 different kinds of cancer each. I already have 4 cancerous-y kinds of things thyroid, skin, eye cancer scares-keep an eye on it kind of thing {all three my parents had those cancers} and undetected placenta accreta that almost killed me and led to emergency hysterectomy and I have young kid that needs a parent.]

When it started I was active, not overweight, pretty health focused and happy enough- needed 7 hours of sleep instead of 12. Now I am 50 pounds up since I have to sit or lie down more than half my walking hours, and my face seriously looks like shit. I aged like 10 years in 2. What gives? I am exhausted and in pain and can not do any of the things I used to do. Sorry for the disjointed explanation. It honestly is hard to focus on my bad days and I dont want to spend any more time in the chair. If someone has had similar issues I'd love to hear, too.

posted by ReluctantViking to Health & Fitness (18 answers total)

This sounds similar to where I was in summer and fall 2022, and some years prior since 1994 or so. I say my podiatrist for routine stuff, and I told him how poorly I was doing. He could see it, and he had me come back every month, "to see how you're doing." (Amazing!)

He finally recommended I see a rheumatologist, and I think you might want to try it.

I wish one of my PCPs over the past 30 years would have thought of that.
posted by jgirl at 2:12 PM on November 21 [2 favorites]

Well, only because you say you are not being cared for by a physician at this time I will include this link about Fibromyalgia by the Mayo Clinic for your review. I just glanced through it and it seems like there isn't a "scan" to diagnose (unless I missed it).

The article does however mention tests or examinations the physician should do to exclude diseases with somewhat similar symptoms.
posted by forthright at 2:23 PM on November 21 [2 favorites]

I have had vague-ish symptoms, especially fatigue with excessive daytime sleep, for well over a decade. A few years ago, one of my doctors referred me to a rheumatologist, who ruled out rheumatoid arthritis and then released me from the practice, saying there was nothing she could do for me.

This spring, my neurologist (I have chronic headaches) referred me to a different rheumatologist, who quickly diagnosed me with a rare disease, autoimmune hepatitis, and offered me a treatment which has made a tremendous difference. The diagnosis makes sense of a great many of my symptoms, including liver pain and elevated liver enzymes in blood tests, which had led many doctors over many years to say things like, "Your liver enzymes are elevated. I wonder what that's about?" and then drop it without any follow up.

This is by way of seconding the idea of seeing a rheumatologist if you haven't yet, or another one if you have but got no help from it.
posted by Well I never at 2:34 PM on November 21 [3 favorites]

There are multiple companies that do these scans. Ezra is particularly aggressive in their marketing. If you are also seeking bloodwork, Function has a relatively comprehensive suite of testing for the pricing.

Neither is cheap, and query whether either is truly going to solve your underlying concerns. But they are available to anyone with cash.
posted by moosetracks at 2:44 PM on November 21 [2 favorites]

A friend of mine did this in Japan. I don't know any more details, but if you're looking for full body MRI-type scans that are definitely cheaper than the US (and the doctors spoke English, he doesn't speak Japanese), that's an option.
posted by ch1x0r at 3:00 PM on November 21

This is awful, I'm sorry. Unfortunately, when it comes to fibromyalgia and ME/CFS, there isn't a lot you can do. That said, keep moving, do yoga, etc are generally contraindicated if you have ME/CFS, which it sounds a lot like you may. If activity is making you feel worse in the following days, then pushing yourself will not help and may well hurt you in the long run. Uninformed doctors will recommend exercise, but there is no evidence that it helps in ME/CFS and plenty of evidence of harm. Some folks with fibromyalgia have some success with naltrexone and some people with ME/CFS have some success with Abilify, both at quite low doses, but the evidence for either of them is weak.

Given the timing, have you also considered long covid? People often get covid, feel better and then have fatigue and other symptoms increasing after a couple months, so it can be hard to make the connection in some cases. We don't know if fatiguing long covid and ME/CFS are the same thing or not at this point.
posted by ssg at 3:02 PM on November 21 [5 favorites]

Thirding a rheumatologist. I had horrible psoriatic arthritis that was dismissed by several doctors before it was diagnosed at my first rheumatologist visit.
posted by knobknosher at 3:14 PM on November 21 [2 favorites]

I came in to suggest long Covid/post-viral illness. My current working diagnosis is post-viral illness similar to long Covid, but triggered by a nasty upper respiratory infection in 2018. The hypothesis is that the URI re-activated the mono I had as a teen, which kicked off all of this nonsense. Before seeing my current primary care doctor, who previously ran a long COVID clinic, I was told I had fibromyalgia. A fibromyalgia diagnosis is the equivalent of a shrug emoji from doctors. It means, we don’t know what else to do, so here’s a diagnosis that can’t be confirmed, which has no treatment. Get out of my office.

I have dysautonomia symptoms and chronic pain, and have seen improvements from interventions targeted to long COVID patients. I’ve been seeing a physical therapist who specializes in LC, who has been helping me increase my activity levels veryyyy slowly, so as not to trigger a crash (which can cause permanent loss of energy capacity). I’ve also had some success with low-dose naltrexone, but recently it hasn’t been helping as much. I’m planning to talk to my doctor soon about anti-glp1 drugs, which have been shown to reduce inflammation and have anecdotal reports of associated reductions in chronic pain, migraines, and other inflammatory conditions. Feel free to me-mail me if you want to chat further.
posted by bluloo at 3:20 PM on November 21 [2 favorites]

Just chiming in to also say maybe try LDN while you look for the full body scan. I had similar symptoms and tried the diet, exercise, etc and really only LDN worked.
posted by luckdragon at 3:44 PM on November 21 [1 favorite]

Are you taking any hormones? I'm so sorry you are going through this. It's so hard to get adequate care especially when you are feeling so crummy.
posted by amanda at 4:21 PM on November 21

Mod note: One comment removed while we check on whether the user meant to post with particularly sensitive info.
posted by Brandon Blatcher (staff) at 5:36 PM on November 21 [1 favorite]

See a rheumatologist if you can get in (I am told the wait times can be excruciating). My me/cfs (a diagnosis next door to long covid, post-viral fatigue, and fibromyalgia) was just rediagnosed as arthritis; it's most likely arthritis with underlying Ehlers-Danlos, but we'll see. It took getting pretty nasty psoriasis, something undeniably visible on the surface of my skin, to get this reevaluation and not have doctors endlessly shrug at it.
posted by verbminx at 2:21 AM on November 22 [2 favorites]

I had similar symptoms. My back pain in particular was incredibly debilitating. But lots of other pain, GI issues, horrible fatigue. I also put on about 40 lbs b/c I went from very active to bedridden a lot of the time.

Eventually, after many useless PCP visits and PT that only made things worse, I got a referral to a rheumatologist. The rheumatologist gave me a provisional diagnosis of hypermobile Ehlers Danlos - I got sent to a geneticist who confirmed the diagnosis.

By the time I saw the rheumatologist, I really had given up hope of ever getting a diagnosis or getting my life back. There's no magic bullet for hEDS, but 4 years later, the pain is more manageable, I'm more active, I've lost most of the weight.

I'm not saying you have hEDS, but I am nthing that you should do whatever you can to get into a rheumatologist. If the first rheumatologist doesn't take you seriously, then go to another one.

Fibromyalgia and ME/CFS are diagnoses of exclusion, so they should be doing the tests to rule out other potential diagnoses before just throwing up their hands and deciding that what you have is fibro.

Did your PCP run any bloodwork at all?
posted by litera scripta manet at 5:31 AM on November 22 [1 favorite]

Oh, also, 2nding low dose naltrexone as worth trying. I don't take it anymore, but when the pain was really bad, that was actually one of the first things that made it much more manageable.

And it should at least be relatively easy to find someone to prescribe it. Check out this page if you're interested in finding a prescriber.
posted by litera scripta manet at 5:33 AM on November 22

My brother lives in Guatemala and paid out of pocket for a battery of scans and tests. Email me if you want more info. Their private hospitals are decent. Check out symptoms for low vitamin D and for Lyme as well. I am so sorry you are dealing with this.
posted by InkaLomax at 6:02 AM on November 22 [1 favorite]

There are definitely people who do this as medical tourism - I've heard secondhand about people doing it in Turkey, here's one video about someone's experience. It should cost <$1000 there.
posted by mosst at 9:27 AM on November 22

Nthing rheumatologist. Multi-year fatigue + pain all over is usually some sort of autoimmune issue.
posted by Jacqueline at 6:06 PM on November 22

Also, IIRC, I don't think "full-body scans" help much for finding autoimmune conditions, they're more for finding tumors.
posted by Jacqueline at 6:07 PM on November 22 [2 favorites]