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Avatar universal

Is it possible, perhaps, that I had a small stroke or series of small strokes?

Hello, all. My story is long, but I'll try to keep it as brief as I can.

I'm 23 years old now, and when I was 14, I started developing strange neurological symptoms that continued to progress over the course of the next several years.

The first issue that I remember experiencing was that I started developing difficulty speaking, but it wasn't so severe an impediment that I couldn't speak at all...I had to put in extra effort to get my tongue into the right position to say certain words, it was really difficult to make an S sound, and I started stuttering a good bit. No one seemed to really notice, though, or if they did, they didn't say anything. Of course, I was a really shy, quiet kid/teen, so I didn't talk much anyway. Then one day, I noticed that my sense of taste just completely stopped working. I couldn't taste anything at all, and I wasn't able to for the next about 3 years when my sense of taste started returning.

When I was 17, I started experiencing blurred vision in the mornings and random dizzy spells. Then when I was 18, one day, I developed excruciating localized pain on the right side of my head by my ear. It pretty much never went away, although there were definitely times when it was worse than others. My head still hurts all of the time in that spot, although it's not nearly as bad as it was when it started usually.

Shortly thereafter, I started developing balance issues, sensitivity to certain types of lighting, and cognitive problems. I suddenly found it nearly impossible to concentrate in my college classes. I wasn't able to follow the plotline of the movies we watched in my film classes (I was a film minor), so I would just sit there and stare at the screen and then go home and Google a summary of the movie. I had a few months when I had major difficulty recognizing new faces. I could recognize people I had known for a long time just fine, but everyone else just looked very "generic" to me. I remember one time, we were at my sister's birthday dinner, and she told me to get our waiter's attention. My response was, "But I don't know which one is our waiter. They all look exactly the same to me." I also remember watching movies and not being able to tell the difference between characters unless they were very distinctly different (i.e. one of the main guys was brunette an the other was blonde) or if they were actors I was familiar with before the issues started. My attention span was also shot as well. I had several people comment on how fidgety and impatient I was, but I couldn't help it. Another major issue was I started having trouble remembering words and formulating my thoughts into sentences. There were and still are many instances where I would be talking to someone and pause because I couldn't think of the word I was looking for. One time, I was in Spanish class and started thinking about how I wanted to go to the gym and work out on the elliptical...except I couldn't remember what the elliptical was called...so I just sat there for the entire class trying to remember the name of it so I could text my friend and ask her if she wanted to go hop on the ellipticals with me.

One day, I walked outside of the school library, and suddenly I was hit with this intense burning smell that I found odd because there was clearly nothing burning in sight. Then it kept happening randomly over the course of the next few months. I started experiencing hallucination-like experiences where I would try to close my eyes to fall asleep and just start envisioning the most random things. I also started involuntarily biting down/clenching my jaw when I was in the stage between being awake and being asleep.

There were other issues, but you get the idea. Things just kept randomly appearing, and most of the symptoms seemed to improve after a few months, although I still have a lot of lingering cognitive problems and bad head pain.

For the first 7 years of all of this, I was stupid and refused to go to a doctor. I was convinced the only explanation was a brain tumor, and if I had one, I didn't want to know. Once I graduated college, though, it was pretty difficult to hide. I couldn't hide behind school anymore to make it look like I had my life together even though I didn't. I went to my GP, and she told me it was anxiety. I went to my dad's internist, and he referred me to a neurologist. The neurologist told me I was too young for him to put me on any meds, so I should just wait 5 more months and then come back to him if I still felt like I had a problem. So I left his office frustrated and went to an acupuncturist. He thought I might have Lyme disease, but I tested negative for it. The acupuncture wasn't working, so I asked my GP if she would give me a referral to a new neurologist. She reluctantly agreed, and the new neurologist said a UBO (unidentified bright object) showed up on my MRI, but he doesn't think it's big enough to think anything of it, so he just wants me to have another scan in 6 months to check up on it. Other than that, he doesn't have much to tell me. Somewhere in there I went to a psychologist too on the off chance that it was all anxiety, but she was an...erm...expletive. But anyway, she gave me some relaxation techniques and stuff I could do to help with panic attacks and anxiety, but none of it helped me at all. Recently, I went to a chiropractor. He said it could be a metabolic thing and gave me this weird diet to follow. He hurt me really bad during my last visit, though, and seemed almost amused with himself after I forcefully pulled myself out of his grip, so I'm done with him. I'd kind of like to punch him in the face.

So yeah, all of these problems, and no explanation. I'm pretty close to giving up looking for answers, but I'm also scared that something major has been missed.

I have read that UBOs can be caused by mini-strokes, so maybe that explains the spot on my MRI? I've also read about stroke patients relearning how to do the things controlled by the affected part(s) of their brain, so I sometimes wonder if the reason so many of my issues started to fade after a few months was that my brain was learning to compensate for the damage. That's definitely how it feels, anyway. For instance, at first my word-finding abilities were HORRIBLE. I was using a thesaurus constantly to find the words I was looking for when writing my school papers or even having conversations on Facebook. I would sit there and rearrange the words in my sentences four and five times until they seemed to flow in a coherent and natural manner. Then slowly, I had less and less trouble formulating sentences, although it's still kind of difficult for me.
6 Responses
Avatar universal
I'm so sorry you're going through all of this! I don't have all if the answers but I will tell you a few things that I know. I personally have a cavernous malformation in my brain which causes some similar symptoms that you are having.

The burning smell where nothing is burning is actually a seizure. I have those too (and they have been diagnosed by my neuro).  It also sounds like you might be having simple partial seizures as well.

Something is definitely going on with your brain and if I were you I would find a neuro that you are comfortable with and whom you trust. I am taking meds now that deal with my symptoms and they have made a world of difference. I honestly think there is no reason for you to have to live like this.

Avatar universal
Yeah, I read that the burning smell and also the clenching my jaw when falling asleep could be a type of seizure, but every time I told doctors that I was concerned I might have seizures, they just looked at me like I was crazy and told me to stop diagnosing myself with things on the internet. The thing about those two symptoms, too, is that I haven't experienced them in a while. The burning smells stopped several years ago, and the clenching/biting down stopped about 5 months ago. So I'm guessing, if I was having seizures, I'm not anymore, so I'd test negative if an EKG were done on me...and frankly I'm so tired of getting doctors to reluctantly agree to test me for things only for the tests to come back normal and them to "I told you so" me to death.

It's so bizarre, and it's hard to not just start questioning my sanity and stop trusting my ability to sense that there's something wrong with me when I've had a ton of people tell me that it's all in my head.
Avatar universal
And thank you so much for the response and not just saying something like, "Go to a doctor. We're not doctors here"  or "You should see a psychiatrist" like people tend to do without even bothering to read the question! That's been my experience on other health-related forums, and it's super annoying. It's like, "If you actually read my question, you should know that I have been to a gazillion doctors to no avail, which is why I'm seeking input elsewhere. I'm not stupid enough to think the people I talk to on the internet are actual MDs."
Avatar universal
These UBOs can be possibly associated with your issues.  
144586 tn?1284669764
Well, it appears you have a slowly progressing systemic neurological disorder, and a good guess would be either an immune disorder, retro-viral infection or a viral infection or prion disease, none of which would show on an MRI or an x-ray. All very difficult to diagnose. Your problems are not characteristic of a stroke, which represents a death of a specific amount of tissue in a specific site. Sometimes there are two things going on at once. For starters get yourself an HBa1c test, just to get that out of the way. I'd like to get you evaluated for an HERV-W infection, but these tests are difficult to come by. Do a search on HERV-W I don't think meds are the answer.
Avatar universal
Thank you for your reply. I Googled what an HBA1C test is, and I have already been tested for diabetes. I've been tested for most things at this point, which is why doctors have concluded that there's nothing wrong with me.
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