BFS Diagnosis from Columbia Presbyterian

[hzInkSpruce]

Hi Everyone- I have been lurking for quite a while and just got my account activated. I started twitching one day at work back in May- it started behind my left knee and spread everywhere else. It seems to have settled in my calves and feet the most. I had a consult with the Head of Neuro at Columbia Presbyterian in NY last week and I finally got the BFS diagnosis. I have had a normal EMG, normal brain, cspine and lumbar MRIs, no Lyme, low B12 which I am getting monthly injections for and a "not completely normal" EEG but apparently nothing clinically significant. I told myself on the drive home from the city that it was now time to put this on the back burner but it seems worse rather than better over the weekend. Now I also have these bugs crawling on my skin sensations the last few days as well. I have anxiety issues and see a therapist but I can't seem to get a handle on all of this. How do I stay patient when I can't stand it anymore? I am worried also that this will start impacting a new relationship I have because I try not to talk about it too much but I then feel like I am hiding something major that really bothers me.Thanks!

 

[Anxietyaway]

Hi,Welcome. I think you will find the anxiety of living w BFS significantly lessened now that you have joined. As far as your news, a neg EMG and bfs diagnosis from the head of CP sounds like cause for celebration!!! Nothing nasty. As you begin to accept this your anxiety will decrease. (Stay off Googe. ) Although we all worry, we have learned to accept it. As the anxiety decreases so too hopefully will the symptoms. Hang in there. I too had problems sharing this with my significant other and it caused many issues for us. I stopped using him as a sounding board and for reassurance and came to rely on my friends here instead. They are the only people who really understand anyhow. Hope you will find this board a refuge. Best, Victoria

 

[GrizzlyLeader]

Bugs crawling, electrical zaps. vibration, buzzing, you name it, Ive had it. A lot of the sensory symptoms have decreased, but I still get them all. I personally think BFS has to run its initial course before it can even possibly start to get better. Best thing is to learn to accept it and DONT ASSOCIATE IT WITH ALS. Its ok to get irritated with the symptoms, just dont associate fear and worry with them. Thats what will get you a fitting for a straight jacket. Just take it in stride as much as possible and you'll get through it just fine. Take care...

 

[BarbiePetals]

I can tell you it does get better. I am almost 2 years into this crap and even though the twitching drives me nuts sometimes, I am so much better with my anxiety and have accepted it's nothing deadly. Annoying yes, deadly no. You will be fine. I also get crazy sensory symptoms sometimes also. It's all part of the hyperexcitable nerves. Hang in there. You will get through it.

 

[hzInkSpruce]

The bugs crawling is a new one last few days- I've had he zaps and jerks though too at times. No need to let the neuro know about the crawly bugs right? as like you guys said all part of the fun?Also do you guys think we twitch at night while we are asleep? Thankfully this has not really affected my sleeping but as soon as I wake up in the morning and even move around in bed the calves start firing away.

 

[hzInkSpruce]

I have a fairly long history of having physical anxiety symptoms- palpitations, chest tightness, headaches etc. In all of those cases, taking an antidepressant has helped me stop dwelling on them so much and resolved the symptoms. This BFS though is not cooperating the same way which makes me think it's not necessarily an anxiety related problem. It's so hard when you have different doctors telling you different things.

 

[timsuprelax]

jennractAs everyone has said- anxiety will make your symptoms way way way worse- if you can feel yourself twitch at night (like they wake you up) then i would guess your anxiety level is very high- take a chill pill- drink some wine-c if you notice it as much- my guess is that you will notanxiety plays alot on how bad your BFS symptoms may end up being for the day or week or however long- I am not saying that it is caused by anxiety- just made worse- keep doing what your doing vitamin wise for the symptoms also ck into how much stress or subliminal stress you have and try to do away with it- also ck the caffine maybe too much intake- anyway i am sure you are just fine-twitches always come after any bad symptoms in something sinister so just dont go there- you will be way better off and really you have nothing to worry about -David

 

[hzInkSpruce]

Thanks David- I am struggling a bit right now as this bugs on my skin feeling is making me think there is still something else going on. I work at a desk job and unfortunately notice these things all day. The neuro I saw has scheduled another EMG for me tomorrow night- he actually performs part of it so I guess he just wants to do his own?