No Support From GP

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No Support From GP

Postby physerv24 on July 14th, 2014, 7:36 am

So I went to a new GP last week (not for the twitching but because he is closer to my home). I brought him my medical records, including the ones from my Neuro who diagnosed me with BFS. After asking me "what is BFS?", he asked me if I was satisfied with that diagnosis and was I sure I didn't need a second opinion from somewhere like Cleveland Clinic! Because he had never heard of BFS and just like freaking google only ties twitching to ALS, he wants me to get a second opinion. How are we supposed to control our anxiety when our own doctors are questioning BFS?? I told him just because you've never heard of it, doesn't mean it doesn't exist. There are thousands of people with this condition. I had a clean EMG/NCS from a neuro with 44 years experience, period.
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Re: No Support From GP

Postby MarioMangler on July 14th, 2014, 11:47 am

How are we supposed to control our anxiety when our own doctors are questioning BFS??


Because the key to controlling anxiety is you, not your doctor. At a certain point we all have to take responsibility that -we- are the ones who are in control of our anxiety over this stuff. If we want to feel better, we are going to feel better. Constantly running to doctors or other people or websites or the aboutbfs.com message board for reassurement is fine at the start, but a certain point you will come to realize that reassurement is sort of a four letter word when it comes to BFS. It doesn't really help you in the long run. All it does is create a dependency in your mind, in fact it is really no different than being hooked on a drug. You need reassurement just so you can get through the day. So you spend your entire day just trying to find that reassurement. It is an endless cycle.

How are we supposed to control our anxiety? By not depending on doctors to control our anxiety. If you want to get a handle on it there are plenty of other ways, and they are all readily available and have been discussed endlessly all over this board. You just have to break out of the cycle of reassurement dependency that so many new BFSers tend to get trapped in at the start.

.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: No Support From GP

Postby physerv24 on July 14th, 2014, 1:41 pm

Ouch.
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Re: No Support From GP

Postby MarioMangler on July 14th, 2014, 9:16 pm

That's not an ouch. That's the kind of reply that is going to help you (and everyone here) in the long run. Just remember that I said that and you will understand it in a couple of months when you get a handle on how much of BFS is really mental.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: No Support From GP

Postby Red Raider on July 15th, 2014, 12:32 am

Hey Vince
Don't worry man just keep in your mind your clean and don't let the anxiety take over. The man has 44 years experience it's a viscous cycle just like we talked about. How are things the same? I'm the same so just have faith in your Neuro your GP he is new remember he is not a ALS specialist ok I'm not saying he is not a good doctor but I would take my Neuro word man and keep seeing him. Everybody is different with anxiety, some people take it better than others so you deal with it the best way you know how! You will figure it out brother I will give you a shout later this week you going to be around? Take care buddy your fine let your GP worry about the sniffles and let your Neuro worry about neurological stuff ok.
P.S. Tell your new GP to google BFS haha he will learn all about I had to tell my GP with VA what it was too and he has never heard of it haha so you might need to school him up.

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Re: No Support From GP

Postby physerv24 on July 15th, 2014, 8:32 am

Hey Houston,

Hope you are well! I'm doing fine. Actually went to the new GP for a sinus infection. The point I was trying to make is that not many primary care docs have even heard of BFS and they, just like us, go to WebMD to research symptoms just like we do. Therefore, folks shouldn't be surprised if their regular doctors suspect the worst when they see twitching just like we did prior to being diagnosed. No worries. I'm sticking to my neuro's professional diagnosis. And yes, I did take him to school on BFS! I told him about the study done by the Mayo Clinic. Sure we all get down now and then and some of us seek more reassurance than others, however we also have an obligation to teach those who have never heard of this disorder so that when a new twitcher presents to his regular doc for the first time, that doc doesn't automatically assume the worst. Obviously, if you are not a neurologist, they don't teach this disorder in med school.
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Re: No Support From GP

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