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"Unknown" cause of stroke at 35 years old
Hi there--live in Ohio and back in Feb I had a stroke. I am 35 year old healthy adult. After many tests in the two week hospital stay I was told HSV2 had caused vasculitis that caused major stenosis to my M1 artery. After 3 weeks of being on IV Aciclovir i was sent for another MRI which showed no better of that artery--it is still very much so stenosed. I have been having new symptoms as far as warmness in head/chest-sore legs-headaches-extreme brain fog/fatigue. I met with an infectious disease doctor whom stated that he does not believe HSV2 caused this and he believes everyone is missing something. My next step is to seek medical attention from the Mayo Clinic...while trying to figure this all out i decided to come on here & post to see if anyone else had any input/experiences with this. Thank you!!
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That's a lot to go through Carlie, and it sounds like they did a brain MRI. Tests can be really exhausting and so frustrating to not have an answer yet!
Sending hugs and positive thoughts! It sounds like Mayo clinic could really help!
Best wishes,
Valerie.
@valeriedawn they have done about 3 mris/3 Mra 3 lumbar punctures a lot of blood work an angiogram and all kinds of crazy stuff 🙁 a lot of my recent lumbar puncture fluid points to something like MS but I believe they ruled that out back in February when I had my stroke/was admitted for 2 weeks. 🙁
@carlie8326
Hi Carlie,
Glad they don't think it's moyamoya, but it must be so hard to not know what's causing symptoms. 🙁
I hope this doesn't sound too intrusive but I'm wondering--Did they do an MRI/MRA? About a year before I was correctly diagnosed, a neurologist that I no longer see diagnosed me with possible MS, which I do not have. The correct diagnosis could not be determined until I had an MRI and consulted an expert. My sister, who is a nurse and worked in radiology at the time, had to stress the importance of the MRI to my primary care doctor at that time, who wasn't sure it was necessary...I've also heard from other people diagnosed with moyamoya that they did not get a correct diagnosis for a long time and after many medical appointments.
I hope you find answers!
Best wishes,
Valerie.
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1 Reaction@valeriedawn Hi Val...thanks for the info unfortunately i believe i was tested for that and it was negative 🙁 i do have the numbness in arm that comes and goes as well.
@lbholley thank you! do you recommend one campus over the other i know there are 3?
Hi Carlie,
Your post caught my interest. I was diagnosed with Moyamoya disease in 1998 and had surgery. I had some of the same symptoms that you describe including warmness in my head and fatigue, along with other symptoms you don't mention (numbness in my arms that came and went, uncontrolled muscle spasms, speech difficulty). These symptoms were resolved with the Pial Synangiosis surgery I had for Moyamoya disease in 1998. I'm curious if you were evaluated (from an experienced neurosurgeon and radiologist) using an MRI/MRA for Moyamoya disease, which is very clear on a scan--The blood vessels look like a "puff of smoke", which is the interpretation for moyamoya.
Best wishes in getting the medical care that you need! I'm happy to keep in touch if you would find it helpful.
Valerie.
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1 ReactionMayo Clinic will be very helpful. Here is my suggestion, and what they say. If you do not live in the area, plan on staying there a few days after your initial appointment. They will do everything in their power to schedule and get tests done right away. They told my husband to plan on staying 4-5 days and we had a busy appointment shcedule (unrelated to stroke), but they got all of the tests done and a consult at the end.
Good luck, I'm sorry you are going through this.
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