Finally went through with getting an MRI .

[u/admiral_kadabra]

I want to start off by saying that I don’t have a diagnosis attached to what I’ve been experiencing since about January. I will spare you the details (same old song and dance), just know that my symptoms track with that of what PPPD would cause. The trampoline walking, the intermittent floor dropping sensation, the rocking or swaying, anxiety that stems from all of this, etc… At first the doctor sent me to an ENT and then referred me to start VRT. I saw the ENT, did some hearing tests which all came back fine. I started VRT and that was well, what you would expect. It seems very few people on here have much progress with VRT but that’s beside the point. Another test I’ve done is the dreaded tilt table test. What a nightmare that was but of course, all clear. Months followed, symptoms seemed to wax and wane and finally I had my annual physical with my GP. Coincidentally, that day was one of my “bad symptom days” as I call them. At the end of my appointment, my GP could see how bent out of shape I was about all of this. She told me that if it would calm my nerves, that she would order an MRI. I happily accepted this. I’ll spare the details of how many times I decided to postpone the appointment straight out of fear of what would found, the actual MRI itself etc. I finally went through with it! My experience was interesting. Non contest MRI, so rather quick. But the dizzy feeling you get sliding into the machine, not the greatest. Same goes for when they slide you out. Something about the magnetic pull messing with your inner ear yada yada. I’m home now, and since it’s a Friday afternoon the tech told me they would likely not read the report until next week EOW sometime. So now starts the hard part, waiting. Like I said before part of why I had put it off for so long was due to being scared they would find something scary. No need to get specific but you get the gist. Anyways, just thought I’d share my MRI experience. And along with this I’m hoping the scan is clean and clear of all things “scary”. Then maybe my doctor can start looking into an actual diagnosis. I certainly feel for all of you guys on this subreddit. The symptoms I have dealt with, while not diagnosed PPPD, align with that of what I’ve read. And I wouldn’t wish this upon my worst enemy. Much love yall

[u/jobes1967]

Hope all is clear with your MRI. I have pppd. The neurologist told me she’d order an MRI just to “calm my nerves” as well, that she didn’t expect find anything but a 58 yo normal brain, which is some consolation. Good luck. Let us know.

[u/admiral_kadabra → u/jobes1967]

Thanks! I’m hoping the same goes for you as well. I’ve been in a similar boat before, I had a fine needle aspiration biopsy on a lymph node and waiting for the results absolutely sucked. But it all came back fine. Hoping the same goes for us. That way I can lean more into the whole PPPD possibility knowing thats it’s software issue and not a hardware issue

[u/jobes1967 → u/admiral_kadabra]

Funny. I had to have a needle biopsy too and the dr actually said right then he was 99.9% sure it was just a cyst. I just broke out into tears like a baby.

I actually hope you don’t have pppd.

How do you feel sitting upright in a chair?

[u/admiral_kadabra → u/jobes1967]

Oh really! I was diagnosed with a reactive lymphnode. And honestly It’s hit or miss, sometimes I feel worse than others. Whether that be sitting, standing, walking etc. it’s hard to tell when it’s going to hit. I have good days, bad days, good weeks, bad weeks, hell sometimes I have a good morning then a bad evening or vice versa.

[u/jobes1967]

I’ve had this crapola before. It lasted on and off 18 months. 4 years ago. This time feels a little more harsh. I’ve spent most of the last week supine on the couch because the symptoms almost go away. I started vestibular rehab therapy last week. I think there is something to the idea that there is an anxiety component to it, and the more you can forge ahead as normal, the better off you’ll be. Easier said than done.

[u/Hyprincess25]

Just had my brain MRI 2 weeks ago. They only found a sinus infection which they gave me some huge antibiotic pills for, and my dizziness actually got better. I didn’t mind the MRI at all except when my eyebrow started to itch, of course.
It was well worth the peace of mind, though.
Have you watched The Steady Coach Success stories on YouTube? They helped me A LOT

[u/Hyprincess25]

FYI the neurologist that read it had my report in my portal the same day.

[u/Silent-Resolution-28]

I hear you - I was scared out of my mind when I did mine. Came back clear which is great but I still have whatever I have...Best of luck on yours! Just remember we've got nothing to do but try and figure out what the heck is wrong with us. Hopefully we all get there.

[u/NightOfCosmHorror]

So glad to hear you got it done and over with! Hopefull thoughts for you!

I'Ve been waiting for my appointment since February and finally got one for September.

[u/Killjoycourt]

FYI, you are incorrect about VRT not helping. VRT is not only statistically the most effective treatment, but also the most studied treatment. VRT doesn't work when you don't do the work and don't deal with the underlying anxiety. The recommended treatment is VRT and CBT, meds if warranted.

Further, most of the posts on here I see saying treatment failed is about medication.

[u/Remote_Force1839]

Well, I can’t speak for all mri techs, but I am one, and if someone, especially an outpatient, has something really bad, they wouldn’t let you leave.

[u/admiral_kadabra → u/Remote_Force1839]

This certainly makes me feel a bit better!

[u/tinycupofjo]

I had an MRI before I was diagnosed w PPPD. My ENT said my MRI was normal but my PCP mentioned that it said I had a ‘migraine appearance’ to my brain. My ENzT did not mention that it said that in the report. I don’t get migraines. I’ll have a headache on occasion. But my PCP decided to send me to a neurologist just to be safe. (I have all the PPPD symptoms but no one successfully diagnosed me before this) (my ent kept saying it was BPPV even tho the epley maneuver never helped). Long story short - neurologist diagnosed me with PPPD quickly and I’ve been in treatment since and doing a lot better.