Unhelpful Advice on **S Forum

[LisaQ.]

My goodness, pike, that certainly WAS unhelpful. I don't know your story, but if a doctor didn't tell you that you might have **S, then you ought not be saying stuff like that, especially here on this forum. It isn't healthy for you, nor is it edifying for the people who are here looking for help. We need to be getting away from convincing ourselves we have **S, not claiming that we might have it...when we don't.

Listen, a hot spot is meaningless in the scheme of things. We all get them. It is one of those VERY characteristic twitches that are associated with this silly BFS thing.

I've had hot spots that have lasted months, and my symptoms have ebbed and flowed as well. Presently, they seem to be more of the "flowing" variety.

Blessings,
Sue

 

[foulmouth]

The doctors don't know what causes my symptoms and they say they could not do anything more untill something really bad would happen. I did not hear any good word for some of them...maby they just feel their knowledge is not so huge as they supposed. Just having a very bad and difficult time with my BFS...

 

[SirTrouserz]

Pike, Get a new neuro that will help you. All neuros are definitely not created equally and some will help you while some will not. You need a doctor that will help you and you should keep looking until you find one. If you have a neurological condition, the worst thing you can do is try to goggle your symptoms. Leave the diagnosing to the experts.

Mark, I have different hot spots all the time that come and go. When they stay it's kind of scarry, but for me they usually leave after a day or so. I have one in my left leg that comes and goes, but I don't like it and I wish it would go away for good. For some people it's different and they have hot spots that last for a long time. There is no one "normal" for BFS/BCFS/PNH. As crazy as it may seem, a diagnosed case of BFS is relatively harmless and something to be grateful for.