Hey Everyone,
This is my first post, and I am a little concerned. I don’t know if I have MS or something else, and I was hoping someone could help.
About me: I just turned 30 last week, and returned to grad school this previous year as my daughter is prek now. She’s five and probably the thing I love most in the world. I’ve been married to my husband for the past seven years, and he’s been great through my being ill these past few months.
In October I got sacral shingles. I had a lesion swab to make sure it was shingles.I also had a blood test to make sure I didn’t have an old HSV-2 infection. Both tests concluded shingles were the cause of the spots. Doctors suggested stress as the reason for it- which made sense to me (my mom has had some chronic health problems culminating in brain surgery in October)
However, even after a round of anti-virals and steroids, I still felt ill.
December 23 I was outside on the trampoline with my daughter (jumping but no crazy tricks haha) and felt a strange feeling in my head. We came inside and I shrugged it off. I started preparing dinner and suddenly lost my vision. There was a dark spot and then colors swirling on the left side of both my eyes. I went to the ER and they diagnosed me with Scintillating Scotoma, and encouraged me to follow up with an ophthalmologist and Neurologist.
Neuro sent me for an MRI- found white matter lesions in my right frontal lobe,but due to my migraine headaches we chalked up the scotoma to a progression and the brain spots as well. The ophthalmologist found nothing of concern. MS wasn’t discussed really due to the location of the lesions.
I carried on with life, but began to experience strange symptoms. Incessant muscle twitching, numbness in legs, hands, back of the arm, and shooting pains and numbness in my face. It got so bad one night in class I couldn’t grasp my papers to put them into my binder. I have also fallen a few times due to leg numbness. The weakness in legs is especially strange. I’ve been a dancer my whole life so weakness in my legs is an odd sensation. Also troubling (totally TMI sorry) but even my lady area has been numb intermittently!
The scintillating scotoma has persisted, but subsides relatively quickly.
In Feb. this year I went to renew my persciption for contacts, and they found that I failed a field test, color test, and my pupils didn’t dialate appropriately. I have limited vision almost exactly in the areas I saw the swirling colors in the scotoma episodes.They also found optic nerve damage, and high pressure in my eyes.
My neurologist sent me for IV infusions of Methylprednisolone (sp?) and dx me with optic neuritis. The meds did improve my vision. He also ordered a lumbar puncture which I have completed. I am awaiting results- however the first phase of testing is clear- just waiting on O-band testing. One note of interest from that exam is that my opening pressure was a 6.
I’m still feeling awfully ill. Constant muscle twitching persists, scintillating scotoma, almost daily headache, new nosebleeds, and though I haven’t had numbness to the point of loss of function since the steroids–I still have pins and needles. I am also really tired- like more tired than ever.
Does this resemble anyone’s experience? Could it be something else?
Thanks so much!