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12928445 tn?1431921902

MANY Weird Neurological Symtoms -- Is it really anxiety?

Hi all,

This is my first post, and is going to be pretty long because I'm really confused and need some advice.  Thanks in advance.

To start, I'm 21 years old and felt extremely healthy up until about two years ago, at which point, I started experiencing seemingly every neurological symptoms under the sun, and it worried me a lot.  I sought treatment for it while it was at its worst, and my NP conducted a neurological exam (which came back normal) and basically referred me to a psychologist to treat anxiety.

Back then, my symptoms included: sharp "shocking" sensations occurring in random spots all over my body throughout the day, feeling like I was swaying back and forth while standing, noticeable (at least to me) coordination problems, tingling/itching/pain in my arms and fingers, twitching in mouth/fingers/arms/legs/you name it, and noticeable stuttering (I always found myself experiencing difficulty saying the letter "D" in words).  All of these symptoms eventually remitted, and I lived pretty normally for around a year-and-a-half or so, and I also eventually stopped worrying about terrible diseases, such as MS, for example.

However, around six months ago, I had another weird symptom (only lasted one night); essentially, I was talking really coherently to someone one night, and then out of nowhere, I started stuttering pretty noticeably. It was actually kind of a combination of stuttering and involuntarily vocalizing sounds in between words.  I didn't seek treatment for it because I was relaxed enough in general at that point to not jump to the conclusion that it was something terrible (I only did that for like five minutes).

Last December (3 months ago) was when my odd symptoms REALLY seemed to spiral out of control, and since then, I've been a mess.  To start, in December, I experienced the really weird involuntary vocalization problem again (< 5 minutes this time around), and it genuinely caused me to undergo a full-fledged panic attack.  I experienced tingling all up and down my right arm, and I felt dizzy to the point of wanting to faint.  I rushed to the ER all concerned about a TIA or something (see, I've been taking estrogen for 7+ months because I'm trans male-to-female, and I knew it could cause blood clots), and they ran all sorts of tests, including how prone to clotting my blood was.  All tests came back just fine...

Starting in January, the really odd involuntary vocalizations became almost a daily thing for a span of about two weeks.  I learned to just try to relax because I felt that it was just me panicking or something.  I did notice, though, that they always came about while looking at a computer screen. As time progressed, the odd vocalizations stopped, but I just had a terrible brain fog all the time (couldn't remember where I was going/what certain words were).  More time progressed, and eventually I got heart palpitation "attacks" that were so violent that I kept landing myself in the ER worried about something worse.  At this point, I definitely wasn't beyond attributing my symptoms to really bad anxiety.  Eventually, the heart palpitations subsided unless I knew I was really stressed, but starting one month ago, I've had other worrisome symptoms.  For example, my coordination seems shot to me (and some days, it's worse than others).  For example, I tried scratching an itch on the left side of my back with my right arm and wound up basically punching my shoulder on the way there.  Sometimes, the coordination is so impaired, that I have to watch my hands to see where they are going (only when it's REALLY bad).  I feel like I constantly scrape against things now, but at the same time, I notice that a lot of people bump into me, so maybe I'm just over-analyzing?  The worst of the coordination difficulty was right at one month ago, and essentially, I lost complete track of where my right arm was going for a few hours one night (I think this is called proprioception maybe...? I study neuroscience.).  I eventually regained the ability to track my right arm, and I just experienced coordination problems from that point on.  I went to a doctor all concerned about this, they conducted a neurological exam, and said that it was likely due to anxiety/fluid buildup in my ear, and put me on an anti-histamine.

Around three weeks ago, was whenever the worst of the worst started, and I think maybe I'm on my way to recovery from whatever I'm experiencing (i.e., I'm improving slowly but surely), but I think I experienced a seizure one morning while alone in my college's library studying.  Essentially, one second, I was just reading something on the computer, and the next, my entire body jerked for a second to the point that I fell out of my chair.  During this -- whatever it was -- my mouth pretty much clicked open, my abdominal muscles flexed really intensely so as to snap my torso forward, and I made a weird sound.  I didn't seek treatment for it (even though I really considered it) because no one I told seemed very concerned and said that they've experienced stuff like that before.  Since then -- and I know that this basically confirms that anxiety is a component to this all -- I have experienced my first-ever depersonalization episodes (feeling like I'm not the one controlling my limbs, etc.), and I didn't seek treatment for them either.  Heart palpitations come and go, I twitch somewhere on my body every few minutes, I get weird shocking sensations, I get pains so deep within my fingers that they feel like bone pain, and I still involuntarily vocalize/stutter here and there.

I'm really worried about what all of this means.  Are the weird vocalizations, constant twitching, weird mouth movements, and the random myoclonic jerk thing indicative of epilepsy maybe?  I never had problems with twitching until two years ago, and if what I experienced a few weeks ago was a seizure, it's my first one ever.  Also, what am I supposed to think about the coordination problems and the temporary loss of ability to track my right arm?  It's really annoying/worrisome to get my hands caught on stuff because they're not going where I intend for them to -- just like it's annoying for my hands to bump into each other while working on stuff because I think they're somewhere else.  Lastly, the shocks, deep "bone" pains, itches, cramps, and twitches all over my body have been causing me to worry about MS or something.  I have some ease, however, because I know that my eyes have been completely okay through all of this, and if it is MS, I don't think I have room to worry about it potentially being the progressive type.  I do, however, worry 100% that there's some sort of damage to my nervous system, and this is pretty terrifying.

Last thing I want to say (I promise): there's a part of me that really wants to attribute much of this to stress/anxiety/depression, and I hope that's all it is because these things can be overcome much more easily than a debilitating neurological problem (or so I tend to think).  I think that anxiety/depression would make perfect sense because I was admitted to a mental ward around six weeks ago due to suicidal feelings brought on by a lot of problems transpiring within my life lately (estrangement from entire family, concerns over getting to finish my degree, suicides of people I used to be close to, always having been gender dysphoric and the implications of such, severe financial complications, etc.  However, I was also released from the mental ward with no diagnosis and no new prescriptions; they essentially told me that my depression is situational and that I can overcome it.  But the freaky symptoms really, really scare me.  I've never had an MRI or anything done, so I worry about some pretty terrible conditions.  I get to see a neurologist soon, but in the mean time, do I have any reason to worry about debilitating neurological conditions?  I mean coordination problems at only 21...?

Thanks so much.
5 Responses
Avatar universal
I'm no expert, but the first most likely cause of your problems would seem to be the estrogen therapy. You need to consult with the doc who did your surgery and prescribed your hormone therapy. Do it ASAP.

If the estrogen is ruled out as the source of your troubles, then your symptoms are definitely sufficient to warrant getting a second opinion from another neurologist.

I wish you all the best!
Avatar universal
Hi there Hun : )
1 thing that struck me when reading your post was your description of vocalizations, twitching etc
Have you ever heard of Tourette's syndrome ?
I may be wrong but it's worth a look and remember Tourette's isn't just swearing  so don't just dismiss it there is a range of symptoms
you may have anxiety and depression that cause some of your symptoms but also an underlying problem that needs evaluating so make sure you get all the tests scans etc you need and don't be fobbed off !

Can u list your medications for me ?
Including any you've stopped or only taken a day or two
Hope I can help xx
12928445 tn?1431921902
Thanks for your input!  I just want to say that I started nearly incessantly twitching long before I started estrogen therapy.  I've seen like three doctors at my university since starting my hormone therapy, presenting each time with complaints of all of these weird neurological symptoms. Each providers has assured me that the hormones couldn't cause this, but that maybe the stress induced by transitioning in general could cause this.  

Also, I've not had surgery. :)  I did consult my treating doctor (the one who initially prescribed the hormones) here and there about this stuff, and he seemed pretty clueless.  The general consensus among all providers who I've seen pertaining to this weird stuff (probably 4 total) is that I'm either really anxious or that there's something really nuanced going on in my nervous system... Can't wait to find out what it is and how to stop it.

Allyson
12928445 tn?1431921902
Hi!

So, I've contemplated Tourette's Syndrome a lot.  Every time I read about it, though, it seems that those who suffer from it started in childhood.  I'm not entirely sure that I fit into that category, but at the same time, I did -- believe it or not -- get in trouble a lot during my youth because I'd accidentally wink at people or blink numerous times in a row.  I still do this stuff.

In addition, even now (at 21 years old), I get in "trouble" by my family when I'm around them for moving almost nonstop.  I shake my feet (thereby effectively shaking the entire house) at the dinner table, for example.  Moreover -- and I didn't even notice this until I actually laid down beside someone else a few months ago -- I move, squirm, change positions, etc., every few seconds, whereas I've noticed that "normal" people can actually sit pretty still.  These are the things that give me hope that I just have like Tourette's or something; I even clench my jaw several times in a row for seemingly no reason, and I don't notice it unless someone points it out.  I've never accidentally vocalized a swear word (or even a word) before, though, but, as you said, that isn't a necessary condition.

As far as medication goes (and this has been consistent for 7 months), I take 4mg estradiol, 200mg spironolactone, and 5mg finasteride every day.  The estradiol and spironolactone are taken twice each day (usually at noon and midnight).  Recently, I also took Meclezine as needed (i.e., I felt off-balance) for about two weeks.  I haven't taken it for a couple of days.

Thanks!

Allyson
12928445 tn?1431921902
Oh, and more in regards to Tourette's Syndrome: Two days ago, while lying in bed trying to go to sleep, I suddenly got this terrible sensation that I had to smile.  I kept trying to suppress it, and the more I did that, the more anxious I got.  I was really scared that my mouth was just going to "snap" into a smile, which would have scared me to no end.  It never happened because I fell asleep, but this is another thing that I think gives A LOT of credence to what you said.

The only problem is that I have other things that really worry me like my coordination seeming impaired (it's been this way for six weeks).  My shoulders constantly run against walls whenever I'm turning a corner, my hands get caught on things, I grab things too hard and wind up hurting my hands, and my feet scrape against the ground when I'm walking.  Any idea what could be causing that? :/

Thank you so much!

Allyson
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