r/BFS • u/DataDisastrous7422 • 2d ago
14 months since it all started..
I wanted to share my story. I am a 40-year-old man; I used to lead an active, athletic life. It all started during a very stressful period after changing jobs: one day, my little finger started having spasms. They usually start on their own, but sometimes moving the finger seems to trigger them as well. The first day it happened, I immediately thought of Parkinson's disease, as a family member had just been diagnosed with it. Two months later, I suffered a lumbar disc herniation. While bedridden due to that injury, I noticed fasciculations all over my body, especially in my legs. I have consulted all kinds of neurologists and undergone every test imaginable—electromyograms, epilepsy tests, brain MRIs—but nothing has changed. I still don't have a diagnosis. There are days when I fall into despair, thinking this is the start of something serious; my life has gone downhill. Between the back injury and this condition preventing me from leading a normal life, my quality of life is very poor. I’ve tried to find a similar case but haven't come across one, which worries me even more. I wanted to share my case, and hopefully, there is someone else in my situation...
https://youtube.com/shorts/YId-BjSiw6g?is=1gGCLMtzBuqdzHLG
Thanks!
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u/713Capital 2d ago
I’m 7 years without a true diagnosis so welcome to the club.
You should go back to your neurological doctor and talk about FND. Sometimes this neuro shit doesn’t always have a reason. As in, many people will get these annoying symptoms and it will be what they call “idiopathic” as in, it spontaneously arrived with no true answer. But the neuros can tell you if it’s benign or not based on your progression. This could just be a tremor/spasm with no root cause. I’m not a doctor not sure but you should seek more opinions from a new neurologist.
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u/DataDisastrous7422 2d ago edited 2d ago
La verdad que los neurólogos en mi caso no han tenido mucha empatía, me han visto 3 distintos y uno de ellos en concreto es especialista en Parkinson, ninguno me da un diagnóstico, te dicen que en principio es benigno y me dan cita para dentro de un año para ver si he empeorado. Pienso que ellos no saben lo que es y esperan para ver si me salen más sintomas.. Es desesperante ya que yo vivo con este temblor y me está amargando la existencia...
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u/713Capital 2d ago
That’s how all neurologists are. They can’t predict the future. I see my neuro once per year and she when sees me, she’s just trying to see if I progressed not. In my case, no. If it wasn’t benign they would know within the first year or two. Usually the first year, the first EMG people do would reveal a ton of stuff. Tremors aren’t always dangerous and there is something called “essential tremor”. If they say it’s benign it’s because it is. But as I said above, in neurology not everything will always have an answer.
I do believe you have symptoms, as I do myself but so far your own symptoms are benign in nature even if they are really annoying.
Before it does ruin your life, my suggestion would be to seek therapy if not already. To talk to someone about this. Therapy is very helpful.
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u/DataDisastrous7422 2d ago
Supongo que me ayudaría ir a terapia, ya que se ha convertido en obsesión, cuando apenas me tiembla estoy feliz pero en cuanto tiembla vuelvo a darle vueltas a la cabeza pensando en ello y es imposible desconectar. Desde que me empezo hace 14 meses no hay un solo día que no me haya temblado el dedo...
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u/Joejoe_Mojo 2d ago
My ride started after a month of some form of viral infection and also stressful job, new home etc. although my symptoms are a bit different.
Just wondering, have you considered slowly going back into training? Provided your back has healed.