Since I was 10 I had funny neurological symptoms that were diagnosed as migraines but never seem to fit. I would have times where I almost passed out (usually when I was on birth control), my legs, arms, or face would go numb, and I would get visual auras sometimes accompanied by an awful headache. I also had headaches most days out of the week. When I was 18 I had a stroke that made my arm and face feel funny. This stroke showed up on high quality MRI. I went on to have an "episode" where I went from being a competitive soccer player and active college student to bedridden in the time it took me to get up from the couch after I was watching TV. This episode gave me left sided weakens, ataxia ( I think that is what my PT called my lack or coordination when walking), no taste on the left side of my tongue, vestibular problems, extreme fatigue, and problems with low blood pressure/high heart rate. My PT also said that my eyes did something that suggested a neurological problem, but I forget the details of this. This episode I assumed to be a stroke as well, but it did not show up on an MRI or CT scan. I found out that I had a PFO and a genetic blood clotting disorder that caused my stroke and ever since I had my PFO closed I have had no more headaches, new neurological symptoms, or "episodes."
Since my stroke I have been diagnosed with orthostatic hypotension, neurocardiogenic syncope, and POTS although this seems like more of a name for a collection of symptoms than a cause, which is what I am concerned about. I have been to so many doctors and most of them do not know what happened, and don't know how to help me.
I was wondering if someone could give me their opinion as to whether my episode was a stroke that didn't show up on an MRI. I have heard of Wallenberg Syndrome which pretty much covers all of my symptoms, comes from when an area of the brainstem is damaged, and if it is damaged by a stroke often does not show up on an MRI. Or, if this was not a stroke what it is? (MS was also ruled out too.) Also, where can I find doctors who understand my problem and would be willing to help me? I live in California, but I am willing to go anywhere I can find help at this point. Do you have any other suggestions as to what I can do to speed up/help my recovery?
It has been one year since my "episode" and I want to go back to being an active college student and soccer player. I know this may never happen but I want to give myself the best chance possible.
Thank you for your time!
-stillkickin'