How do I get a diagnosis?

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?

So, what does your discharge summary actually say, you quitter?
If you were admitted to the Mayo Clinic, the software won't allow a discharge without a diagnosis being entered.
There has to be something documented. At least a suspicion or an observation.

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)...

If those demyelinating lesions you mentioned are present, they’re actually one of the primary markers used to diagnose MS. However, doctors also look at other specific criteria to confirm everything—things like lumbar puncture results, VEP tests, and certain subjective symptoms (by the way, all the ones you described are common in MS cases). Crucially, the involvement usually needs to span at least two different bodily systems.

What was the provisional diagnosis they gave you, and what specific findings did they use to officially rule out MS?
I ask because, in the early stages, doctors often issue a temporary diagnosis that actually carries the exact same code as MS: disseminated encephalomyelitis (G35). It’s treated and managed just the same way, but it isn't considered "definitive" until something else happens—like a secondary flare-up or seeing how those lesions progress over time and space.

In any case, even if a diagnosis isn't set in stone yet, once neurological symptoms show up, the standard protocol is usually a short but intense burst of corticosteroids (typically about 3-5 days), which is known as pulse therapy.

Regardless of the specifics, there's no way they could have just discharged you from the hospital without providing follow-up instructions, recommendations, or some form of a treatment plan.

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...

Alright, would you mind sharing the specific diagnosis you were released under? Even just the code would be helpful.
Maybe it was CIS?
Generally speaking, I’ve seen cases where people were diagnosed with MS despite having clear spinal fluid results; usually, if there's any doubt, doctors insist on continuous neurological monitoring.

What kind of follow-up or recommendations did they give you?

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...

So, there's an official diagnosis: G37.9 Demyelinating disease of the central nervous system, unspecified.
Isn't that a legitimate diagnosis? Once you include the physical symptoms, shouldn't a doctor be able to use that to write a referral for a physiatrist and physical therapy?

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...

Of course, don't let them confuse you. If your arms and legs aren't showing their usual strength and mobility like they used to, what exactly is he trying to claim?
The fact that a diagnosis might be temporary doesn't change much—it's still a description of the state of your brain. Regardless, if your leg feels weak, there’s usually a specific term for it, like paresis, though I won't go Googling right now to make sure I'm using the exact right word.

Are you out on medical leave? If you're on leave or simply unable to work due to disability, and your job requires you to be mobile on your feet, then there is definitely some rehabilitation to be done.
If the doctor starts getting philosophical with you, just remind him about your patient rights regarding that phone of yours.

As for this "temporary" diagnosis, looking at how these things are categorized lately, they all seem to boil down to the same thing, and as you can see, the symptoms remain identical. It really just comes down to how things progress from here. I'm keeping my fingers crossed for you that things stabilize.

When I had my first episode, nobody even mentioned the possibility of MS, and it didn't even cross my mind because it was centered around my eye. A year later, I had a second one. That's when they ran an MRI, which showed demyelination. I didn't bother with any more tests back then because, just like the first time, everything seemed to resolve on its own—even though I did agree to the steroid pulse therapy just to be safe.

Six months later, during a checkup with a private neurologist, everything looked perfect. He reviewed the results and told me not to stress about it, to just live life normally, take some vitamins, and come back in a year for a follow-up MRI.

However, when that new scan showed things had worsened, he sent me straight to the Mayo Clinic for the remaining tests, and that was finally when the diagnosis was confirmed—two and a half years after my very first symptom appeared.

The passage of time is such a critical factor in establishing a diagnosis; unfortunately, you can't rush it. Or perhaps, you're lucky you can't. 😉

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...

darkmason11 said:Thanks for the advice! I’ll definitely take your lead if he starts giving me trouble again...
I'm really hoping this isn't MS, even though I'm checking off quite a few boxes on the symptom list. I'm just praying this is temporary... I truly hope things don't take a turn for the worse and that I can just stay right where I am—feeling almost back to normal...
Honestly, the thought of trekking through more doctor appointments and endless testing is exhausting. I'm just over it, especially since I haven't actually learned anything useful yet...

It looks like I'm not alone here; reading this feels like looking in a mirror.

I honestly can't get a straight answer from my doctors—it’s driving me insane. I’m dealing with these constant bouts of diarrhea where I’ll end up running to the bathroom five or six times in a single stretch, and man, it is just miserable. To make matters worse, my stool is sometimes black, but most of the time there's blood in it, which is terrifying. I've already gone through two colonoscopies and they said everything looks fine. I've had abdominal ultrasounds, full blood panels—you name it—and even tried that chalky stuff for gut health, but every single test comes back "normal." The only thing they actually found was some stomach erosion and gastritis. They told me gastritis is totally treatable and gave me pills for it; the inflammation seems to have cleared up and they promised the erosions would heal too, but... I don't know. I’m still stuck in this loop because despite all the tests saying I'm fine, I feel absolutely terrible and nobody can tell me why.

driftinggull21 said:So what does your discharge summary actually say, oh wise one?
If you were lying in a bed at the Mayo Clinic, the software literally won't let them process a discharge without an entered diagnosis.
It’s gotta say something. At least "susp." or "in obs."

What does that even mean—"susp." or "in obs."? "In obs" means under observation, and "susp."...

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 😉

🙂😉

darkmason11 said:So, I just got my discharge papers from the hospital a few days ago, and it says I’m still under observation (diagnosis: demyelination of the brain, unspecified). It makes me wonder... they've been running tests on me for a whole year now. Does it really take them that long to land on a diagnosis, or am I just some kind of freak case? 🤷
If anyone has a smart answer, please just shoot me a DM. 😉

It took them two years just to figure out what was actually going on with me.
Maybe it actually takes that much time to get a solid diagnosis, or maybe they're just clueless and making stuff up as they go. Or, who knows, maybe you really are an outlier.🙂😉

Look, you’re definitely dealing with demyelination, but here’s the thing: demyelination isn't a disease with its own name and social security number. It's just a process. A whole bunch of different things can trigger it. Multiple sclerosis is technically a demyelinating disease of "unknown etiology," but doctors won't slap the MS label on you unless you check specific boxes in their diagnostic criteria. Plenty of viruses or bacteria can kick off an immune response that leads to demyelination. You’re probably being watched right now because you don't meet the formal criteria for MS—or any other specific diagnosis—so they’re waiting to see if the clinical picture clears up enough to point toward a final answer. Everyone’s body works differently. For one person, MS is aggressive and moves fast with a grim outlook; for someone else, they could have brain lesions for 15 years without a single symptom, with those lesions either lying dormant or "regenerating" and popping back up. Basically, MS in one person isn't the same thing as MS in another. My advice? Don't just sit there listening to a neurologist. I know it sounds out there, but Stage 3 Lyme disease can mimic MS or similar syndromes after years of being hidden. Tons of people get misdiagnosed with MS when they actually have Lyme. Half the time, patients don't even remember getting bitten by a tick, and in the US, we see thousands of cases reported every year. Get a serology test for B. Burgdorfer to rule it out if you haven't already. Hang in there.

Kimberly Ward said:What does "susp..." actually mean?

It means suspicion of... something.

Michelle Evans said:Suspecting... (something).

Take F42.1 susp. or R50 in obs., for instance.

darkmason11 said:I’ve just been sitting here with this temporary diagnosis for months now, and I still haven't gotten a single concrete answer or any actual treatment. For now, they're saying it's brain demyelination, but they have absolutely no clue what's causing it... They initially thought it might be MS, but then they ruled that out because all my tests came back normal, so we're still stuck in limbo. Honestly, I don't even know where else to turn to get a straight answer, especially since I can't afford to just go see a specialist out-of-pocket at a place like the Mayo Clinic...

Unfortunately, you aren't alone in this...
I've been stuck in this endless cycle of doctor visits and hospital runs for years now. I currently have about five different conditions listed as "observation only." I guess maybe it's better that nothing is official yet, rather than having a definitive diagnosis, but the reality is that as long as everything stays unconfirmed, there's no treatment. There's just no hope for things getting better if nobody knows what they're fighting.😢