CosmicVisitor
Well-known member
Hello twitchers !!! I don't think I have posted here in a really long time.. I am sure the question of somatization or somatoform disorder has frequented the board in the past, but I wanted to bring it up because I think it can play a role in your symptoms. I presented very much like anyone else here with a sudden widespread attack of twitching, tingling, tremors and all that jazz... in addition I ended up with a dirty EMG and a diagnosis of Peripheral Neuropathy, or PN which can cause fasciculations and an array of neuromotor and sensory symptoms... In my case, there seems to be a component of actual organic disease as well as a benign process... say what ? thats right... You could have a disease even as severe as ALS and have benign and malignant fasciculations... Now wait a second before you get all freaked out... If you have not had any clinical weakness or an abnormas EMG study then you are 99.999% sure not to have a malignant condition and probably never will. Clinical weakness is very marked, but even then it can be due to something called somatoform or conversion disorder. This is where the mind can actually trick your body into dysfunctioning, or even alter your perception of your bodily function. So, how do you know if you have somatoform? you don't .. You actually believe the problem is real no matter what... This can be a dangerous situation because once you have been labeled as somatic, your records will be muddied up and in a case where you have a real problem, it may be overlooked or dismissed; Such is my case.. I have visited several of the top Neurologists at universities and even Cleveland Clinic and the diagnosis varies between them all.. Unfortunately, the neuro at Cleveland Clinic wrote in his report that since I did not have signs of weakness and that fasciculations were not present on examination that somatization was likely.. And for some part of this , he is correct.... I have gone through episodes of heavy symptoms and periods of almost absent fasciculations.. In a disease such as ALS, fasciculations don't quit until the muscle is gone.. Here is the crappy part of this though... I live near the Cleveland Clinic in Florida.. and when I started to have Gastrointestinal problems I went there... a physician there did some work up and didn't find anything... he did a colonoscopy and upper scope.. after a week, I had continuation of bloody stool, pain and weight loss.. I was met with a very brash attitude... he stressed that noting was wrong with me and to get out of his office so he could see people with real problems .. I was devistated... There is so much more to the story, but I later learned that the records in the computer from the Neurologist giving me a somataform tag altered his judgement in my case.. When I took my records elsewhere they were reviewed and nobody wanted to help me .. I have been to over 30 doctors and the diagnosis of somataform diagnosis has piled up in my records so much that I can't go anywhere with these records and get an objective work up. Many of the doctors have given this diagnosis without any work up, only review of records.. So What can i do now ? How can I get an answer at this point? My primary suggests that if I keep going with this I will end up with an invasive test or study that will harm or even kill me. has anyone here ever had to deal with this ? by the way... none of you have ALS ... If there was anyone here was really close to gettig that as a diagnosis it was me.. My neuro looked at me in March of 2005 after my EMG and said " this could be Lou Gherigs" .. he did mention it could be something more benign as well, but ALS is all i could hear... When I saw someone in public in a wheelchair or a wasted state.. all i could do was panic that that was going to be me.. and if you really believe in that .. it could actually happen to you.. you could actually make yourself sick with worry and anxiety... I ended up closing my lucrative business and trying my hand in the stock market because i wanted to learn something I could do from a wheelchair if I had to in order to support my family.. I ended up blowing up my portfolio, nearly a quarter million dollars all gone ... poof ! My anxiety went through the roof .. All of my symptoms that had leveled off all came back at once.. along with a full time panic attack every day for hours and hours I was in flight to fight.. I ended up very very sick and because of it I may die now because I didn't get the anxiety under control.. and is it ALS that got me ? nope ... stress anxiety and somatoform... I am posting this as a warning to some here who are letting these problems control their life to get some cognative therapy and sort out what is real and not.. otherwise you could end up like me .. i don't want that for you .. PS I have a wesite about my issues .. gutpain.com