3rd Opinion Visit with New Neuro

twitchamy

Well-known member
Hi all,

My primary care physician sent me for 3rd opinion with a new neuro. I knew I didn't need to go...but since my insurance okayed the appt. I decided it couldn't hurt. My GP wanted me to follow up for the same reason and to reassure me again that nothing serious was wrong with me.

It was a nice visit. He had all my previous records and exams...so he didn't even examine me. We just sat and talked. I reviewed my symptoms with him and discussed this web site along with the Mayo study. He said that he does have quite a few patients with our same symptoms. He didn't concede the whole 'syndrome' theory. Rather, he just sticks with the word 'benign'. He did shed some good light on the whole thing.

Essentially he said that ANY diagnosis from a doctor is solely meant to determine the next steps of treatment. In many conditions, the doctors don't know what precedes the diagnosis in the first place. For example, he reminded me, millions of people suffer from high blood pressure--and yet the doctors don't know exactly why each patient gets it. Regardless, the docs are able to diagnose the high BP and treat accordingly with medications. In our cases, he said that it doesn't matter what the cause is--whether viral or anxiety or whatever--just the fact that the diagnosis is benign is what is important. From there, treatment is for symptoms only--and sometimes the benzos (esp. klonopin at night according to this doc) are the most helpful.

This makes good sense to me. BFS is still weird--but I'm looking at it as just that--WEIRD but benign. As long as we're twitching, we'll never feel completely 'normal'--but we have to deal with it. I figure I AM normal...just have some weird stuff going on that I don't need to worry about. So on with our lives we go--and we should be THANKFUL that we have nothing else!!

To anyyone here who is twitching like mad and might think that you're the only one with twitches 'so specific' or 'so different from anyone else'...trust me--I've read enough of this board to know that someone on here knows exactly what you're going through. Likely, it's many of us.
This is a benign condition. Finding out the exact cause won't really change anything--because we're just going to have to ride this out no matter what the cause was in the first place. Working on anxiety will certainly help--as well as the knowledge that the twitching will hopefully subside as time passes. If it hangs around for a long time--so what--it's benign. Be thankful that you don't have terminal cancer for now--or better yet, be thankful that your child doesn't have terminal cancer for now. (Not trying to be gloomy--just trying to shake some life perspective into the mix here).

Please everyone, enjoy your day--and ignore the twitching as best you can!

-Amy
 
but you must know...finding out what causes it will lead to a cure...i still want to know what is causing it...i know its benign,,but im still curious..i want a cure..no more pain and buzzing and tingling ect would be great...i can care less about the twitching.
 
Hi 12Drifter12...I hear what you're saying. I'd love to see a cure too--but I'd rather see a lot of other diseases and conditions cured first....before our benign BFS is cured. Plus, 'Cause' and 'Cure' are not always related...

It could be that we never know the cause, yet we still might eventually find a cure (less stress is a big step--or it could be simply letting the condition ride it's course if it is viral in origin--or maybe a magic medication).

Now think about cancer. We can take every precaution with our lifestyle and diet--but we still might get it. No one knows for sure why cancer strikes certain people and not others. Fortunately for some cancers, there's chemotherapy and stem-cell transplants etc...to provide a cure. Other cancers have no cure.

So many of us on this board (myself included) have been spun up over BFS for too long. It truly is frustrating--but if we can all get to a place where we let go of the frustration--it truly does get better. At least the mental aspect gets better.

Consider this too--what if we DO find out what causes BFS--and yet there's still NO cure. We'll just have to live with it as long as it wants to live with us. I'll take BFS any day over terminal cancer or ALS for which there are no cures as well.

Some doctors have suggested anxiety; other docs have suggested post-viral--and others have suggested that we have hyper-excitable nervous systems....I believe that any of those could be true. Assuming one of those is true--how do we cure it from here? There's no way that the docs are going to do the research to determine this. They have far too many other things to research. Even with ALS and Parkinsons, they know what is happening in the body (loss of upper/lower motor neuron capabilities and lack of dopamine in the brain respectively)--yet they still haven't figured out the cure...and of course, the researchers are going to concentrate on those illnesses--and never BFS--because it's a benign condition.

I hope to heck I'm not sounding preachy. I just want to help everyone get over their worries. Furthermore, I want everyone to start trusting their test results. Lastly, I want to remind everyone that as much as we think 'finding out what causes BFS' will make us feel better once and for all...this is NOT likely to happen any time soon--if ever. So the best possible thing we can do is say--ok, it's benign, no worries, hakuna matata! (Funny enough, my kids are watching 'the lion king' in the next room). Odds are, we won't be finding out anything more--and we should all be happy the docs are spending time researching other illnesses in the meantime.

Eliminate the undue stress, and let BFS run it's course. I'm now on my ninth month--and I've just recently truly accepted this--and guess what? I've hardly twitched at all the last couple weeks. I filtered through every possibility and chased every thought of what might cause this--and now I realize it didn't really matter. I was just over-thinking and being selfish (in a good way) wanting to find out what's causing BFS for my own desire to feel better. If one of my sons was diagnosed with cancer tomorrow, you can bet I wouldn't be spending my time trying to figure out what caused it--I'd just be wanting to get treatment to make him better. Thinking about things like this in terms of my children gives me the wake up call I need--solely because it really opens my eyes to the how insignificant my own BFS is in the grand scheme of physical illnesses. My stress over this is absolutely nothing compared to the stress and agony I'd feel if either of my kids got really sick (terminal or not).

Thankfully, we don't have to worry about dying from BFS (whether we know what causes it or not)--so I'll live with it as long as it chooses to live with me.

It's all about the right perspective. My personal perspective on BFS is in check now. It won't get to me anymore. I want everyone else here to feel the same way....and to feel this way knowing that we probably won't ever know the true cause of BFS. If it's a virus--there's nothing we can do anyway but ride it out. If it's hyper-excitabilty in our nervous systems, there's not much to do there either except try different meds. If it's anxiety--then that's a tough one too. You get the idea....knowing the cause doesn't mean we'll get the cure...regardless, it doesn't matter--let's all be happy we don't have to worry about it taking our lives....and on top of that, let's stop it from wasting so much of our time needlessly worrying.

-Amy
 
Amy-

Thank you. I found my "stable place" and came to grips with this whole thing several weeks back (and enjoyed several twitch free days as a result), only to have a new wave of weird twitches, discomfort, and pain set in on my left leg and eventually erode my confidence a bit this week. Yet, somehow I always knew this board would be my best hope for bringing me back "online" again, and there are your messages - on point, uplifting and just the shot in the arm I needed.

Let's face it - unless a few of us are the truly lucky ones, we're all in this for a long ride. It can be bumpy and rough if we lose sight of that, especially when the desperation to feel "normal" again sets in. What you reminded me is that feeling "normal" extends well beyond some minor twitches and aches - it is loving my son, appreciating life on its own terms (everyone bears crosses - of all different shapes and sizes!), being strong for my wife, and taking time to appreciate the little things. The rest is just, well, life's little challenges....

30 minutes ago, I was dreading another long, sleepless night. Now, I think I may just head straight to bed and enjoy a comfy, peaceful night's sleep. I'll probably twitch and stiffen up - big deal...I'm going to rise above these challenges and get on with getting on.

A small thanks for taking the time to post - you helped at least one of us directly tonight.

JG
 

Users who are viewing this thread

Back
Top