UCLA Neuro Doctor Laughed Me Out

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Gregthepower

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My first twitchng cramping started in June 2004 and then Jan 30, 2005 my life changed when my whole left side kicked in with twiching,cramping heaviness some unbalance ( since then some minor hnad thumb and ffoot arch atrophy and it is very difficult to type with my left hand index finger has a mind of it own).3 + years since I was rudely laughed out of the top neuro's offfice at UCLA Westwood ( AFTER all oF THE test.. all oF THEM ) and so I have kept quiet - clonopan to relax and vicodain when the pain is terrible. One doC thinks it is all due to lack of oxygen ( sleep apnea)I keep quiet at work and hold it all to myslef ... I am going to start the tests again of course i am petrified bt my parter just came in trying to reassure me that I am walking talkikng swallowing etc etc during these years of "heck" and he said as I approach 4 years... "that itself, should alleviate my fears... can it all be wrong ? I NEVER EVER research any other disease beside BFS because my mind soars in fear.... but could /does the other bad diseases manifest themselves so slowly? UGH UGH UGH to all i wish you health and peace of mind - this has been a living heck anyway anyhting you can say is appreciated with love and appreciation greg
 
Greg,Your partner is right....just the time frame of your sxs rule out anything sinister. But, the anxiety that accompanies bfs can be severe and crippling. Work on the anxiety and get back to living as normal a life as possible. Once you beat your fear, this becomes a pretty benign condition....take if from someone who has been exactly were you are and lived to twitch, cramp and tell about it :D) .Take care,Gary
 
Hi Greg,Almost 4 years into this, if it would be something bad you would probably be dead 2 times ;) . A progressive deadly disease does not progress slowly. Be sure you are fine, me too experience the cramps, twitches and severe leg pain - although the leg pain has been better the last months due to massages. 20th Oct it will be 1 year for me, still wondering if it could be something bad, but have been cleared by 2 GP's , 7 neuro's, 2 professors in neurology and 1 prof. researching ***, but still thinking...can they all be wrong? I stopped going to the docs for test because otherwise I will stay in this circle. At this point I'm still walking, talking, swallowing...Just take one day at a time and work on that fear, it's my big task too.Hang in there buddy!!!Best regardsBart
 
Greg,I too have fears, however, let me tell you about my situation. I started twitching over 12 years ago (head to toe). It has migrated from right to left, top to bottom and everywhere in between. Over the last 1½ years I have developed some problems with my hands and feet (you can read my post from today). I did have an EMG last September from my foot to my neck and everything was clear. The only advice I can give you Greg is that we have to try to have faith in our doctors and understand that not everything has an answer. If there is anything that I have learned over the years, and believe me I could stand to use this advice myself, is to take life as it is on a daily basis, deal with your struggles, face your emotions head on without letting them control you and get out of bed everyday with the knowledge that you are here. My doctor at Mayo 12 years ago was wonderful and he told me "today you do not have ALS, nor anything else serious, however, I cannot guarantee that you will not be hit by a car tomorrow". His humor kind of put everything in perspective. I too have anxiety and take clonazepam and I too struggle daily. There are many of us on here that know where you are coming from and hopefully can provide what insight we have to help alleviate some of those stresses and fears.Hang in there! Stacy
 

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