Hello everybody,
I want your critical and analitical thinking regardig my case.
I am from Romania so my english may be a bit off. Sorry in advance.
It all started in 2014 when I was aged 20. I noticed a mild numbness in my lower part of the right leg which I and the doctors attributed to multiple disc herniations in my throracic and lumbar spine portions.
Then this numbness progressed to my right arm. Had a full brain spine MRI that showed the disc herniations.
After that hell broke loose and I developed numbness and a subjective weakness almost everywhere in my body. So the discs herniations weren't to blame.
At the beginning of 2019 and until now my mom has spent over 15.000 euros on analysis. Been at 6-7 neurologsts, done several brain and spine MRI's at 1.5 T and 3 T with and without contrast, 5 EMG's and netve conduction studies (NCS), all the blood analysis, 6 or 7 neurologists has seen me for the objective exams, done genetic testing for Spinal Muscular Atrophy, for Kennedy's disease, motor evoked potentials, visual evoked potentials and Whole Exome Sequencing (that I wait the result of).
I have a psychiatric history starting from the age of 15 when I went on sertraline and then continued with alprazolam and zolpidem plus several anytipsychotics.
All the medical comunity (neurologits and psychiatrists) have come to the conclusion I have somatisation disorder (psychosomatic disorder) coupled with a long use of benzos and sleeping pills (3 years aprox) that have disrupted the way my brain functions or that I'm stressed.
However there is a twist to the story.
The only thing they found at the brain MRI's which remained stable across time were these 2-3 non-specific white matter hyperintensities (demyelinating micro-lessions of 2mm) which are most probably of vascular origin. All the neurologists stated that those happen in anyone and they are asymptomatic (healthy people get 1 aprox every decade).
So all of them have said no MS. They said it with so confidenced no one wanted to do a spinal tap to see if it's negative.
Meanwhile my symptoms (tremor, muscle twitching, numbness, a feeling of heavy arms and legs) are getting worse.
Again they are getting worse but they do not show on regular examinations.
If you were to see me in real life you would see me as a healthy guy that fatigues a bit too fast.
So here I am after more than 15k euros spent and no answer besides you have a history of psychiatric problems and attempted suicides by hanging. No one will ever take me seriously now.
But maybe they are right. Those micro-lessions might not be MS related but then again I get worse and worse and less functional.
My last attempt to find an answer was to contact a medical clinic in Bucharest who has a partnership with Charite University-Hospital in Berlin. They denied mt entry not thinking there is more to be done.
So what are your guys thought on my health. Is it:
-MS
-Psychiatric
-Neurological but not MS, maybe something more rare.
I might have missed something from the story because there is so much data but roughly speaking this is the state I am in right now.
Thank you in advance!
Robert Nicula, 26y
I want your critical and analitical thinking regardig my case.
I am from Romania so my english may be a bit off. Sorry in advance.
It all started in 2014 when I was aged 20. I noticed a mild numbness in my lower part of the right leg which I and the doctors attributed to multiple disc herniations in my throracic and lumbar spine portions.
Then this numbness progressed to my right arm. Had a full brain spine MRI that showed the disc herniations.
After that hell broke loose and I developed numbness and a subjective weakness almost everywhere in my body. So the discs herniations weren't to blame.
At the beginning of 2019 and until now my mom has spent over 15.000 euros on analysis. Been at 6-7 neurologsts, done several brain and spine MRI's at 1.5 T and 3 T with and without contrast, 5 EMG's and netve conduction studies (NCS), all the blood analysis, 6 or 7 neurologists has seen me for the objective exams, done genetic testing for Spinal Muscular Atrophy, for Kennedy's disease, motor evoked potentials, visual evoked potentials and Whole Exome Sequencing (that I wait the result of).
I have a psychiatric history starting from the age of 15 when I went on sertraline and then continued with alprazolam and zolpidem plus several anytipsychotics.
All the medical comunity (neurologits and psychiatrists) have come to the conclusion I have somatisation disorder (psychosomatic disorder) coupled with a long use of benzos and sleeping pills (3 years aprox) that have disrupted the way my brain functions or that I'm stressed.
However there is a twist to the story.
The only thing they found at the brain MRI's which remained stable across time were these 2-3 non-specific white matter hyperintensities (demyelinating micro-lessions of 2mm) which are most probably of vascular origin. All the neurologists stated that those happen in anyone and they are asymptomatic (healthy people get 1 aprox every decade).
So all of them have said no MS. They said it with so confidenced no one wanted to do a spinal tap to see if it's negative.
Meanwhile my symptoms (tremor, muscle twitching, numbness, a feeling of heavy arms and legs) are getting worse.
Again they are getting worse but they do not show on regular examinations.
If you were to see me in real life you would see me as a healthy guy that fatigues a bit too fast.
So here I am after more than 15k euros spent and no answer besides you have a history of psychiatric problems and attempted suicides by hanging. No one will ever take me seriously now.
But maybe they are right. Those micro-lessions might not be MS related but then again I get worse and worse and less functional.
My last attempt to find an answer was to contact a medical clinic in Bucharest who has a partnership with Charite University-Hospital in Berlin. They denied mt entry not thinking there is more to be done.
So what are your guys thought on my health. Is it:
-MS
-Psychiatric
-Neurological but not MS, maybe something more rare.
I might have missed something from the story because there is so much data but roughly speaking this is the state I am in right now.
Thank you in advance!
Robert Nicula, 26y
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