Living with Persistent Symptoms and Anxiety

[MaximusPrime]

The experience of having other diagnoses excluded and then remaining with persistance symptoms is a real bummer and the cause of anxiety. Your docs have only so much resource, ie time, emotional energy, money, and available tests. Once they are confident, there is no progression (as is the case for you) they will aim to discharge you so that you move on in your life. Anxiety can prevent this however and lead to further consults.
To the neurologist whose next patient may have MS, ALS and Parkinson's disease, your problems are annoying but not in the same league. This is something that all of us with BFS should be very grateful for. So stick with your fellow sufferers, understand the limits of medical diagnosis and get on with living. Sure as eggs is eggs there will be other illnesses , mild or severe, acute or chronic that will face every single one of us who write on here. At the most positive I can get with this BFS thing, I hope that it has perpared me a bit for when then next thing happens and also makes me get on with living write now with as positive an attitude I can manage.

CJH

 

[Alonzo]

"When i took my neurograph test the nurse told me she had an old man there for testing and that his body acted like an eel. Popping and twitching everywhere, activly, big ones like i have on wery wery bad days. AND she said he had nothing.. I feel rather bad for the man to have all that but to be diagnosed with nothing...:/ "


Popping, thumping, jolting and all of that are actually good signs as far as not having ALS goes. That is not how ALS twitches appear or how they work.

Not having a diagnosis doesn't mean anything. There are still a lot of doctors out there that do not know about BFS and who do not care to entertain the idea of studying or "diagnosing" a benign syndrome, when they have patients who DO have serious, fatal diseases that they DO need to tend to.

It's all a matter of priorities, and your "benign syndrom" is not a priority (nor should it be) to a lot of doctors and clinics when people are dying of MUCH worse things on a daily basis that they do need to pay attention to. So don't take ot too harsh and just try to move-on. You did get a diagnosis, it wasn't ALS... so be happy