Neurological Symptoms: Seeking Help

[jessica25yashley25]

Hi my name is Lara I'm new here, I have been suffering from odd and life altering neurological symptoms for 4 months now. The worst are these horrible jerks that happen all over my body when I try to sleep, they even include involuntary swallowing and grunting sounds in my throat that prevent sleep entirely without benzodiazepine treatment. I also have this constant tingling at the top of my head. I have not been officially diagnosed with BFS, but everything I initially feared has been ruled out (AL*, MS, Parkinson's) as all my tests come back normal. I just happened to notice in all my hundreds of hours of research that these symptoms often show up on this website and I have felt so alone and hopeless. The 3rd neurologist I just saw diagnosed me with "Brainstem Myoclonus" but it still is not consistent with all my symptoms. Like BFS there is not really any way to say exactly how or why I got this, just that something has damaged my Central Nervous System along the way. In my case it seemed obvious it was a bout of severe viral meningitis/encephalitis I had when I was 6 years old. Just wondering if anyone else here ever suffered from this disease or something similar in their childhood or even recent past. I had brain swelling and 104 fever for 10 days, I guess I should be grateful I had no sign of damage for 30 years, but like post-polio syndrome this stuff can show up decades later. Of course I have great fears and anxieties how this will continue to evolve and progress as time goes on so hoping to find support within this community. I have at least been assured by all 3 doctors that my symptoms seem "benign", and I'm finally past the initial crisis and grieving period that so many here have shared with me along this journey... Thanks for listening, so curious to hear if others suffered brain/spinal cord infection at some point...

 

[WindyCityGentleman]

Yes I had meningitis when I was 10 which I got probably from the tick bite .. :crying:

 

[SwiftTaySwift20]

I had viral meningitis when I was about 20 y/o while working a summer job for a landscaping company.Swift_TaySwift20

 

[PrickLedPin]

Since there will be LOT of people responding "yes" (obviously when you ask such a question ... you get what you want), I will say NO in my case.I know a cousin that just had a meningitis last year and the only "symptom" remaining is a "sort of tiredness" (not a tiredness from muscle use, he is doing desk job).What are you symptoms? Do you have twitches, tinglings, pins and needles, pain, sudden stinging or "needle" sensations ... etc? ... with theses jerks.I do jerk some time, even when looking at the TV but it is not my major symptom, it is so rare that it is the least one.If you don't have theses (or at least one of theses) "other" symptoms it is not BFS in my sense.I also have this tingling on the top of my head since 3 1/2 years.Good luck

 

[jessica25yashley25]

Thanks for your responses, and sorry if not clear on the specific point of the question- I know most neuro symptoms, and especially what I've read of BFS, that the exact cause may never be known for most people (and the greater majority certainly have not had this rare illness). Just thought maybe a few out there possibly attribute their BFS to brain or spinal infection and subsequent damage. All of my tingling and spasms are in my neck and head (the lower cranial nerves) and hence a brainstem origin. I don't have any pain whatsoever or numbness, just random involuntary muscle movements (myoclonus). I guess like most everyone else here I am seeking a specific "trigger", thought some others might consider meningitis/encephalitis as their trigger as well.

 

[BlueMan]

No meningitis or encephalitis in my medical history, but I did have a 105°fever as a small kid, plus two years of middle ear infections. Whether or not there's any connection is an open question as far as my docs are concerned, though the middle ear infections and resulting damage probably explain the tinnitus I've had for decades.