Hi all!
I’m new on here and am hoping to get some advice and reassurance.
It all started about 3 months ago when I had a shadow in my vision. Ophthalmologist diagnosed me with a cotton wool spot which started the tailspin. Cotton wool spot form when you have some sort of systemic disease that causes loss of blood flow to eye. Won’t affect vision but just means something is going on. Diabetes and hypertension are the most common causes. I was having high blood pressure, that started at the ophthalmologist, probably because of my anxiety so unsure if that’s the cause of cotton wool spot. Ophthalmologist ran a ton of tests including CBC which were all normal. Fast forward to next couple of weeks when I started to lose my appetite and was very fatigued. Developed a “butterfly rash” on my face after being in sun so doc ordered Ana test which was marginally positive. Was referred to a rheumatologist to run more tests for autoimmune disorders. All inconclusive. During this time started to become nauseous, mostly in morning and had abdominal pain. Had an abdominal CT scan which was normal. Have had several more CBCs (all normal) and CMP’s (everything mostly normal besides elevated protein in blood). Checked for vitamin deficiencies, parathyroid hormone, blood cultures, all normal. Had some chest pain so got an Echo and chest x-ray, both normal. Had a 24 hr urine test and showed I had elevated protein in urine too.
I have been completely freaked out about various cancers etc but then started getting neurological symptoms: twitching all over and muscle jerks and just jittery in general. The muscles all over my body are tired- not weak just tired, like feels like I worked out hard but didn’t. Even my jaw muscles tire when I eat. I have lost about 12lbs in last 2 months but have not had much of an appetite so that is probably why. I have also had some pins and needles and some burning feelings randomly but the twitching and jerks are what are consuming me.
I think next steps are going to a neurologist but I’m so scared. Would ALS present like this?? I always think the worst. Health anxiety is the worst!! Please help!!
Thank you!