Help needed! What could my symptoms possibly mean?!

Posted by romeo2020 @romeo2020, Dec 27, 2020

So I´ll post my long story in short. My symptoms are tremors (muscular twitching or involuntary jerky movements in the body), heart palpitations, (vision issues, such as) light sensitivity, constant movements in the body - the tics, that is to say - insomnia, severe, a severe kind of abdominal gas present all the time, muscle contraction in the whole body - as if I´m being held or tied to something by someone. Additionally, I´ve a shaky voice, and I can´t consume even a sip of caffeine, as it causes me a severe attack of this inner restlessness.

As expected, I saw a cardiologist, but every test showed up as negative. Nothing from gastroenterology, neurology or endocrinology either, as all the tests showed no damage done. Then of course I was asked again to see a psychiatrist (I say again because, given the symptoms, I myself fixed an appointment with two different psychiatrist before with any other specialist). Now, for the third time, the psychiatrist says these symptoms have nothing to do with psychiatry, given the absence of depression and anxiety itself. She´s baffled and has no idea, and that because.....

... any antidepressants, anti-psychotics or sedatives worsen my symptoms to the extremes, and also that nothing helps for sleep. Even Benzodiapines put me to a forced very short sleep where the body continues to stay jerky and restless, and Benzodiapines worsen my symptoms the next day!

She´s firmly of the opinion that the issue is a neurological one. However, my EEG and MRI scans showed nothing when I saw a neurologist!

However, the psychiatrist has still fixed me an appointment with a neurologist once again. I´ve now idea what to say to the specialist! Does anyone over here any idea as to what this could mean?

Any help will be hugely valued. I´m actually going through horrible times.....

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@romeo2020

Thank you so much for taking the interest in my rather mysterious case. I´ll again type my reply on a point to point basis so that it´s easy to keep a track of things.

Firstly, incredibly sad and yet inspiring at a personal level to know that you too have had a long struggle behind yourself.

1. How was your atypical Parkinson´s disorder diagnosed? Was it only based on yourself falling? Also, if I may know, what were your symptoms?

2. I´ve been to endocrinologists twice, they performed their tests, and found nothing. It was at the University Clinic of Frankfurt. Also, coming over to the US isn´t possible for me, right now at least.

3. "vestibular problems like balance? Any foot-dragging? Any vision problems?"? Only vision problems from these. Blurred vision is a symptom that comes and goes, but severe sensitivity to light is one. Yellow light feels so severe as if it´s reddish, and white light feels as if it´s yellowish - I know it´s weird!

4. I´ll push for an MRI of the spine. Lumbar puncture, no, that hasn´t been done either. The issue here is, the neurologists that I´ve seen so far have shown little interest, due to their pre-conceived idea that it´s a straight forward mental health issue only.

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@romeo2020,

My Parkinson's (PD) symptoms included foot-dragging, balance problems (these first two were especially pronounced when I was tired) lack of facial expressions, and a very soft voice. These are all typical PD signs.

I certainly do feel for you that your symptoms seem to be relegated to the "psychiatric" label. That just is not fair to the patients. It is often an easier way to approach a problem if the doctors cannot find the real reason. Hence, we have to take responsibility to seek out answers on our own.

One more question, if you will. When you saw the endocrinologist was your Vitamin D level checked, calcium level, parathyroid hormone level? These can all point to hyperparathyroidism which is a rather rare diagnostic label. Here is some information on the symptoms of hyperparathyroidism from Mayo Clinic's website, https://www.mayoclinic.org/diseases-conditions/hyperparathyroidism/symptoms-causes/syc-20356194.

As you reside in Germany, is there any other country where you might seek medical attention?

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