What could be wrong with me?!

[Buttercupsanddais1es]

Before I start, I have been to the GP & an ENT specialist and had a ‘probable’ diagnosis. I’m not going to mention what that is right now, as I want other people’s ideas first.

I want to go back as it would be nice to have an actual diagnosis & I’m not convinced their ‘probable’ diagnosis was correct.

I know with things like this it’s hard to really pinpoint a cause and get a diagnosis, but i want to go back to the GP full of knowledge and really able to advocate for myself, so I’m asking if anyone has ANY ideas of what could be causing these symptoms.

my list of symptoms (I know a couple of these are issues in themselves, but listing everything anyway);

• generally never feeling well (had this for as long as I remember, and I can’t really explain it, I just never feel quite right)
• tinnitus & hearing loss in right ear
• spontaneous vertigo, that can last anywhere from a few second to hours
• random very high heart rate (120bpm - not exercise/movement induced)
• rash caused by sunlight (sun allergy??)
• Raynauds (flairs when I’m cold or anxious)
• psoriasis
• anxiety
• depression (probably caused by my above symptoms)
• fatigue
• brain fog

i think that’s it. Family wise my great nan and nan both had/have lupus and my great grandad had meniere’s.

My money was on meneires until I saw the sunlight rash...I'd want to see a rheumatologist for a lupus panel. It's also possible from your list of symptoms you have both. Any joint pain/stiffness/swelling.

Psoriasis might not be linked, it is its own AI disease too.

B12 deficiency, these are exactly my symptoms. Shocked to find out my levels were seriously low potentially leading to irreversible neurological damage. On treatment now but it's going to be a long haul with no guarantee I'll be back t8 my old self.

Vasculitis or lupus. Have you seen a rheum? What bloods have you had done?
Some symptoms also fit POTS and sjogrens - completely possible to have more than one autoimmune disease, I seem to collect them!

Forgot to ask if you've had vit b/d/folate/ferritin checked and also full thyroid panel

Hypothyroidism might fit.

Definitely sounds like one of the autoimmune connective tissue disorders. Raynauds would be very suggestive of systemic sclerosis.

B12. Absolutely. I have many of your symptoms! If you take any supplements it may show normal b12 levels in your blood tests but your body cannot use it.
It took me a year of terrible blood test results to get a diagnosis because they gave me pills.
I now have injections every other day and am now starting to feel normal.
The consequences of misdiagnosed b12 deficiency are terrifying.

Thanks everyone, there are definitely a few illnesses I’ve not heard of and will do so research on.
the probable diagnosis they gave me was menieres, but I feel like most of my symptoms can’t be explained by that (as soon if you have said, it’s possible to have multiple illnesses, so I’m guessing that’ll probably be the case).

i had my bloods taken when I was pregnant (2022 & 2024) and they didn’t flag any deficiencies, but I was taking prenatals so maybe that could have masked them?

How do I go about seeing a rheumatologist? Last time I went to the GP he just said it was anxiety 🙄

Meniere’s Disease and Vestibular Migraines. They often go hand in hand, but are not the same. I have both (I think).

@Jfieobabco i used to suffer with migraines migraines a lot and have wondered if I could have vestibular migraines

I think the problem with autoimmune stuff is that it becomes very difficult to tell one from the other; in some ways, I think have a diagnosis of a specific condition is a bit of a red herring. For what it’s worth, I have psoriasis and psoriatic arthritis. I may have fibromyalgia on top, I may not, it’s impossible to say. I also have been diagnosed with Mast Cell Activation Syndrome although I’m not 100% convinced of that one. Basically, there are just lots of ways that my body doesn’t like itself. This sounds way more dramatic than I mean but I sort of feel like I probably shouldn’t be alive per se because my body isn’t geared up for living as a human. But somehow, it is.

@Buttercupsanddais1es

"How do I go about seeing a rheumatologist?"

ask for a referral from the GP, you are not well and this is a time you will have to be assertive, it "sounds" like an autoimmune problem

have a look here & here

I agree, I also would mention the family history - Grandparents with Lupus.

Any chance you've contracted syphilis? All of those symptoms can appear with secondary/neuro syphilis.