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What on earth is wrong with me

2 replies

interestingcase · 14/08/2023 18:16

Named changed

I have a mish mash of very weird symptoms that have recently landed me in hospital but still I'm none the wiser and now I feel I am under 4 different departments the waters are just muddying more

If anyone has any ideas I'm open to them

2 years ago , I moved house and as I was packing realised my joints were hurting. My left knee and ankle swelled horribly , and to a lesser extent my right ankle

Went to gp , had bloods and put on bed rest , took weeks but did go down

A few months later still had terrible knee pain but then both ankles swelled and felt like the inside of the ankle bones had. Even hit with a hammer and. Could hardly walk , my ankles also looked discoloured, bruised , and the veins were black and stood out

Back to gp
Sent for x rays , nothing on those , referred to rheumatology to see if rheumatoid arthritis
Took literally months to subside , in meantime had an MRI on knee , shows severe degeneration and would normally be referred for surgery
However
Saw rheumatologist who said they start me on methotrexate and steroids
Between the MRI results I woke up with pain and loss of vision in just one eye
Went to optician and was sent straight to hospital with a swollen optic nerve
Saw ophthalmology , had high dose IV steroids and an MRI on brain, more blood tests, in as a day patient for 5 days
Had MRI , radiologist reports no mylation and a pappillodema
In 1 eye - which is basically unheard of
In meantime Opthalmology consultant ring me saying come back in , I've tested positive for quanterferon ( blood test for TB) and I then have a lumbar puncture , and am referred to infectious diseases consultant

Orthopaedic rings me to day can't operate on knee if have TB
Ophthalmology consultant says could be why the swelling in eye and he thinks could be active

Infectious diseases consultant rings me saying no evidence of active TB , he thinks it's latent , will treat for that , and will be seeing him this month for full LP results
And he thinks it's more likely to be autoimmune,

Since then I've started to get jerking in my limbs as I fall asleep. Just an arm or a leg will jerk and wake me up.

Orthopaedic consultant described me as a "very interesting case" but I'm totally confused.

And worried . I'm not working at moment . I live alone , I'm in pain, my mobility is so reduced I've had to hire home help, I can't get up or down stairs easily, can't get in a bath , can't walk far, can't bend or kneel, and I'm totally depressed.

And I still don't have a clue what it is, I can't start the methotrexate before the tb is treated (either latent or active)
I can't have the surgery on knee
I've no rheumatoid factor in blood
I've got inflammatory markers in blood which ophthalmology says means my body is fighting something
I've tested negative for HIV

So if there are any budding Gregory House wannabes out there please hit me with your best guesses.

OP posts:
pollykitty · 14/08/2023 19:23

I’m not a doctor but work in pharma but many of your symptoms sound like rare neurological disorders like myasthenia gravis, NMOSD, and MS.

diamondinaruff · 14/08/2023 19:43

I was considering asking for. Referral to a neurologist but then that's 5 consultants

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