18 Months of Twitching and Atrophy Fears

InkedMama

Well-known member
Ok ..I just wrote out about my whole experience and symptoms and visit and it didnt post. So here it goes again. As most of you know I've been twitching OFF and ON for 18 months. (4 months this past set). The past few days I "thought" I was noticing ATROPHY in my ankle, my calve etc. ! Sooo literally last night, the night before last I cried, threw up my food, and trembled from being soooooo scared (which is NOT good when your pregnant). This morning I got up and began to pray. I said "God, I cant take this another day, w/ this worry and anxiety and fear..its eating me alive"...So I got on the computer and called EVERY NEURO in MY CITY and SURROUNDING CITY. I found the top specialist in my city..! I called..I was on the phone w/ the nurse and my voice was just trembling.. I started crying- they had NO appts available today- but she said "let me talk to Dr.Counce and see if I can get you in anyhow. I thought Ok God, If this is your will, it will open up for me. Sure enough at 11:45 my phone rang and the nurse said "The Doctor is going to see you during her lunch". Can you be here at 1:15pm. I'll be honest.. I didnt shower, I didnt put make up.. I didnt do anything. I hit the door . I got there and I was shaking like a leaf..I saw all these people around me.. A LOT of MS..and Dementia...and other mnd's , dont know If I saw ALS but I did see some disabled patients. I just kept praying. Anyhow they finally called me back- I saw a nurse- she took down all my info, history etc. Then I saw the Nurse Practictioner..she did my strength, reflex, babinski, eye movement thingys..etc..ohh and this pin like needle thing all over my legs and feet... :oops: ouch. Soooo..ohh by the way..(my reflex were slightly brisk, which she said "no concern" esp since I was uptight and shaking like a LEAF. Sooooo she left the room and dun dun dun dun.....Here comes the most beautiful astounding neuro I've ever seen! She went over all the strength test with me again- etc..checked my reflex's and said "normal range". Then she got a rubber thing and started hammering away gently at my muscles and said "maybe we can aggrivate them enough so they appear for me".. :whistle: Because since I had been in her office I hadn't had a ONE . Nope she couldnt get them to do a thing. (go figure) :rolleyes: Anyhow- she then said "Have you heard of Benign Fasciculation Syndrome" :eek: I said "why YES!". She said. Well..I cant see your fasciculations , BUT what you describe sounds like it...soooo this is your Dx. I said "Well what would it typically mean if you cant see the fascics she said , Nothing!" but she said I believe you have them you just dont have them bad. You'd thought I'd one the lotto. I jumped up and hugged her. She said..there is ONE MORE TEST we can do if you want to for YOUR REASSURANCE but I am 100% confident on BFS. She said ever heard of a EMG I Said Yes. She said..if you'd like it for peace of mind we can do one. I said "If YOUR CONFIDENT in your DX" then I am...She said "I'd only do it for you- I know your fine". Soo I said "I'll pass". Once again as its been said here 1 MILLION TIMES its about WEAKNESS. REALLLLLL WEAKNESSS!!! She was not concerned where or HOW i twitched...my strength was marked "excellent". She said We typically do EMGS for patient reassurance, to look for nerve blockage, or to further a dx. , but in your case, you really are ok w/out it.Sooooo I jumped off the exam table..hugged and thanked her for her time...and went on my way- She said NO FOLLOW UP unless you just need more reassurance! Today is a NEW LEASE ON LIFE! I finally DID IT!!! I will agree if you HAVENT SEEN A NEURO to see one..To PUT YOUR MIND AT ease...and NOT GO THROUGH THE LIVING HELL THAT I HAVE. Please!!!!Ohh I dont know if I mentioned the possible atrophy and dent...in which she chuckled and responded..."thats nothing NEAR IT"...she said my feet were bulky and good tone and so where my hands.Anyhow THANK YOU EVERYONEEEEEEEEEEEE ON THIS SITE!!!!! , but I have to GO NOW!!!! I've got 10 weeks til this baby comes and I am going to start living again!!!Lovely :sick:
 
Credentials: Dr.XXX joined Simon Williamson Clinic in 2002 after serving as Chief Neurophysiology Resident at the University of Alabama in Birmingham. Dr. Counce served as a member of the UAB Housestaff Council Felloswhip. Dr. Counce has several published articles and has participated in several research projects. In October of 2000 Dr. Counce was given a grant for her work on "Magnetic Source Imaging in Patients with Normal or Non-localizing MRI." Dr. Counce is board certified in Psychiatry and Neurology. She is a member of several professional organizations including the American Academy of Neurology and the American Epilepsy SocietyI'll have to run w/ that!!!!!!! :sick:
 
Great news for you ... so if there are others out there that have been told it's stress/diet/etc, yet the still feel the random twtiches here and there and various times out of nowhere, then the "typical" neuro (even though all treat differently) would most likely do the same physical basic neuro exams as a GP would do, talk with you, and with no weakness, etc ... basically just reassure you and offer an EMG "for your own sake"? I believe this sums up what most have said on this site, is that right? Did your neuro really think nothing of just having random twiches all over that come and go? Thanks for the response!
 
Thought nothing of it! She said she has seen a lot of patients w/ it- A LOT of them w/ EXTREME anxiety over it being something ELSE, but the majority 99.9% are benign and just annoyance. Mine have always come and gone. No Hot spots- Not always present went a few months w/out it..then came back ..the going and coming is TYPICAL of it.NO WORRIES HON! I saw GP too soooooooo he was right- neuro was right- so if the GP is all you saw, he says its benign. Go w/ it. IFFFFF your gonna con't to stress..just see a neuro..its worth it!Lovely
 
Hey Lovely, I am so happy for you! You had a great day. I love ya, but my advice to you is get the heck off this forum and go live your life!! Hugs,Linda
 
Dee Dee,Congrats on a superb neuro exam today. Ironically, I saw my Neurologist today as well. I posted the full report on another thread in the General Topics board. This was a routine 2 month follow up. Every test I've had has been negative so has every clinical exam. I don't want to repeat my post but anyway he stressed WEAKNESS. That is the true hallmark of als. He went on to say it's not precieved or it's not I feel weak. You are just weak. He wasn't even concerned with twitching. He squashed the whole twiching concern immediately. Everyone twicthces. It's weakness. He said get healthy and change your lifestyle for the better. Congrats again. Maybe today will be the day that both of us "move forward". Best of luck.CDC
 
Hey Lovely!Congratulations on your fabulous neuro report! Relax now hon, you have so much for look forward too! Enjoy that little bub she will grow up so quick!I am so happy for you, you were there for me in some dark times!Very Best wishesSandra
 
Congrats!:)My own neuro, as well as several from the reports I've read lately have said that the twitches are benign and don't perform the EMG. I wonder, why is there so much focus on the EMG on this forum?
 
My very first Neuro, an old Croatian specialist, professor, who is also the member of American Academy of Neurology, American Neurological Association, World Federation of Neurology etc, mentioned exactly like that. But for my own piece of mind he sent me to EMG exam in 2004.
 
There is no IF. We are all pretty healthy persons in good condition. Paul, what are you thinking about "last minute" score against C.? What a pitty!
 
Funny- I checked this today- I was just thinking TODAY- Dang it. I should have done the EMG, but when my NEURO looked at me (mind you, THE CHEIF OF NEUROPHYSIOLOGY) straight in the face and said "you do NOT have ALS or any MND"..but BFS which is totally non harmful...then I have to go w/ that. She said she would do a FEW PRICKS if I wanted it for reassurance but she did NOT need it for her assurance. I told her I had three 3 pricks I new already no need for any more (meaning ex boyfriends) lol ;) Today when I was rattling off on the CLEAN EMG thing and why some do it..and why the EMG is sorta a big deal ...I only think its a BIG DEAL if they FIND WEAKNESS , ATROPHY, ETC. and maybe no fasics..*which would be the hallmark of als combined w/ these other things*..soooo they use the EMG then. My neuro couldn't get ONE fasic to JUMP..she nailed w/ that hammer quite a bit- but she believed me..."Clinically, she did not see them..Clinically I had excellent exam", but SHE went ahead and gave me my BFS card and sent me away w/ a kiss and not even a follow up..I like that!!Lovely
 

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