Brain Lesions and Double/Blurred Vision

[BeaGriff]

Hello!

I have been dealing with Lupus for over 20 years now but I’ve been slowly getting worse the last few years. Please tell me that you have these symptoms too and what kind of Doctor is the best one to see because I’m at a loss. I went to the Mayo Clinic today and the neuro-ophthalmologist just said he wasn’t sure what to “make of the lesions”. SMH 🤦🏻‍♀️

I’m dealing with:

Sharp stabbing side headaches

Dizziness/ vertigo

Blurred and double vision that comes and goes

Leg rashes and leg pain (excruciating) on the shin

Confusion

Low white blood count

D-dimer 10x higher than normal

Weight gain

Brain lesions on the white matter

Fused bones of my neck c3 and c2

Mononeuritis

Dry eyes

I’m feeling hopeless because the doctors tend to just say “you’re me symptoms are a lot.” Which makes me feel like a bother or that they think I’m making it up. But I wish they could jump inside to feel what I feel so that they can experience what I’m dealing with. My family is beyond helpful and I’m beyond blessed by God for an amazing rheumatologist. But my neurologist isn’t helpful at all….. they mention MS but then the neuro-ophthalmologist just seems perplexed with the blood and the brain lesions on the MRI. It’s so frustrating because they either don’t believe you or they brush you off like these things are just to bothersome to try and figure out.

I just wanted to share because today’s mean Dr just broke my spirit and I feel crushed.

Thank you all for letting me share. Have a blessed night!

Bea

[StriatedCaracara]

I believe that 'sclerosis' can be caused by inflammation due to connective tissue disorders as well by multiple sclerosis.

This is by logic, not from what doctors say. As normally they say things like it is something else, it is in your head, for bladder symptoms - I was told it was only something men get...all ridiculous answers really.

Maybe if it has not gone on too long it might be reversible (treatment with steroids or something). Again this is me working things out by logic, not by what doctors say as again nobody has discussed much, followed up or treated.

At the moment I have tender scalp stabbing headache affecting jaw and eye which I believe is temporal arteritis but my ESR never goes up much. I did get a referral for ultrasound last time it happened - but the appointment was month and a half after the referral by which time it had resolved. Maybe it is not as high grade and is on simmer so they aren't so used to picking up...I despair too..

Six months ago I started on hydroxychloroquine, which seemed to have helped all but neurological things...I'm currently self-medicating the other symptoms with aspirin (tender scalp headaches) and tiny amounts of steroid cream (skin issues - like eczema and calcinosis around knee and ankle joints). I'm not sure where the responsibility lies to some extent - which department takes responsibility ...

This is a good post. Thanks for posting. I look forward to reading other replies you get.

Take care. Keep pursuing answers too. Hope you find people who do help. Sometimes it is just the matter of finding the right person.

[soul22]

Hi

In this instance id ask rheumatologist to email neurologist as a colleague to share sytpoms ask seen better speclized neurologist.

I've done so before it adds weight and helps most cases.

[Betty909090]

Sorry to hear but all these docs seem so utterly hopeless on lupus?

See a specialist lupus doc!

But the rheumatologist seems ok?