Posts by darkmason11

So, I just got my discharge papers from the Mayo Clinic a few days ago, and it says I'm still under observation. The diagnosis listed is demyelination of the brain, unspecified. I guess I'm just wondering... since they've been running tests on me for an entire year now, does it really take them that long to reach a conclusion, or am else I some kind of outlier? 🤷
If anyone happens to have a semi-intelligent answer, feel free to just slide into my DMs 😉

Thanks for the advice. I’ll definitely try that if he starts giving me trouble again...
I'm really hoping this isn't MS, even though I have quite a few of those symptoms. I just keep praying that this is all temporary... I mean, I hope there won't be any more flare-ups and things will just stay exactly as they are now, which is almost okay...
Honestly, I don't even have the energy to go running from doctor to doctor or searching through medical sites anymore. I've just had enough of everything, especially since I haven't actually learned anything useful anyway...

Honestly, I don't even know what to tell you. My physiatrist is basically claiming there’s nothing to rehabilitate until they land on an actual diagnosis—which is just some temporary placeholder while they play detective—so they haven't even sent me to physical therapy yet... I suppose we'll see. I'm heading back for another consultation soon, and I think I'm going to have to be pretty insistent about getting a referral. I really need to start strengthening my arms and legs if I ever want to actually get back to work...

So, I’ve been discharged, and they gave me a diagnosis of brain demyelination, code 37.9—which, if you recall, I already mentioned earlier... all they actually handed me was a prescription for Neurobion, some Vitamin C, and iron supplements because of my anemia, plus a referral for physical therapy. That's really it. That's everything they told me.
I guess they just said to head back to the Mayo Clinic if my symptoms start getting any worse...

Melissa James70 said:If those demyelinating lesions you mentioned actually exist, then we’re looking at one of the primary markers used to diagnose MS. But, I guess, there are other criteria that have to be met too—things like lumbar puncture results, VEP findings, and certain subjective symptoms (honestly, everything you described fits the profile of MS). Plus, they usually need to see involvement in at least two different bodily systems.

So, what exactly was this provisional diagnosis, and what specific evidence did they use to definitively rule out MS?
I ask because, in many cases involving MS, doctors start with a temporary diagnosis that essentially carries the same code: disseminated encephalomyelitis (G35). It's treated similarly, but it isn't considered definitive until, say, a relapse occurs or they can prove the lesions are spreading through time and space.

Anyway, even if the diagnosis isn't set in stone, once neurological symptoms show up, the standard procedure is usually a short but intense burst of corticosteroids—about 3 to 5 days—what they call pulse therapy.

Regardless of the specifics, they shouldn't have just discharged you without providing follow-up instructions, recommendations, or some kind of treatment plan.

They told me I wasn't feeling bad enough to start on corticosteroids. They just said to take vitamins (which doesn't seem to help since I take them constantly anyway) and go to physical therapy, though my physical therapist says there's nothing to rehabilitate until I actually get a diagnosis, so I don't know who's crazy anymore...
They ruled out multiple sclerosis because they claimed my spinal fluid and blood work were fine, so for now, they just gave me a diagnosis of brain demyelination pending the next flare-up...
They thought maybe it was because my sister also has disseminated encephalomyelitis and suspected a genetic link, but now they're saying it isn't, because all the tests—including the VEP and Baer tests—came back normal...

driftinggull21 said:I mean, what does your discharge paperwork actually say, you quitter?
If you were admitted to the Mayo Clinic, their software won't even let them process a discharge without an entered diagnosis.
There has to be something written down. At least a suspicion or an observation.

I've just been sitting here with a temporary diagnosis for months now, and I still haven't gotten a definitive answer or any actual treatment. For now, they're just saying it's brain demyelination, but they have no clue why... they initially thought it might be MS, but then they said it wasn't because all my tests came back normal, so now they're just stumped... and honestly, I don't even know where else to turn to get a real answer (not that I could afford to go seeing specialists privately anyway)...

I honestly don't even know what else to do to get a straight answer regarding my diagnosis... I spent 15 days at the Mayo Clinic undergoing a mountain of tests, only to be discharged without a single clue. Now, the exact same thing just happened to me in Chicago—another 15 days, endless testing, and still no diagnosis, which means no actual treatment either... Basically, they found some lesions on my brain, but they can't pinpoint the cause. Meanwhile, I feel like I'm getting worse by the day, though I suppose I'm in a slightly better phase right now since the symptoms have calmed down a bit (if you count the headaches, nausea, dizziness, tingling, and the weakness in my arms and legs...)... Does anyone have any advice?

I recently visited the Sister of Mercy clinic to see the neurologist Vanja Bašić Kes, and I honestly can't say enough good things about her. She and Dr. Vid Demarin are just incredibly kind and professional, which is great, but more importantly, you can tell they actually care about helping their patients...
As for a neurosurgeon, I might suggest Dr. Josip Paladino over at the Mayo Clinic; I haven't personally been in his care, but my sister says he’s absolutely top-notch.

Hello everyone,
It’s been recommended that I see Dr. Demarin regarding some neurological issues, but I’m having a hell of a time trying to track down her private practice. I know she’s affiliated with the Sisters of Mercy, but the wait times there are just astronomical, and I really can't afford to wait... I suppose my situation is somewhat urgent. If anyone happens to have any leads on where she sees patients privately or how I might actually get an appointment, please let me know. I'd really appreciate it.