Response to questions (Sam)
Thank you everyone for replying. The reason i have not found another job is because i am afraid to loose my health insurance at this time. I guess when i go back to work next week i will see how my strength holds up. My diagnosis has been a very long battle/road. I basically was diagnosed backwards. Where i worked i was getting sick a lot from mold and children that had strep, my body basically would feel like i had the flu and I did not want to move. All my bloodwork came back fine, but at the same time i had pain that would be so intense it would wake me at night. My lower back would cramp and spread to my pelvis. My chest on the left side would cramp and radiate down my left arm mimicking heart attack but my heart is fine. My GP ordered the usual tests and they all came back normal. Then i was at work and noticed my muscle twitching between my thumb and pointer finger, it made my thumb move and i though it was funny because it lasted so long (left hand.). My GP referred me to a surgeon because my lymph nodes would stay swollen for months (due to severe mold allergies i found out a long time later.) when i saw him i started having muscle spasms in my legs and my leg muscles would look ripped! I also had a squeezing sensation that ran up my left arm, up my neck, along my face and under my tongue. Months later it would run down my leg, now i know it was spasticity. The surgeon did a thourough evaluation of my muscles and body then said to come back if i continue with the problems.... I also had been complaining of severe fatigue for many years, docs would say "oh your a mom your suppose to be tired all the time." I also had shoulder stiffness that would become extremely painful for many years, but my GP thought i had tendinitis. I started to get muscle twitches constantly, the big ones... They were so annoying, some lasted minutes and some lasted an hour! I noticed muscle differences between my left and right side so i went back to the surgeon. He noted muscle wasting of my hand, bicep, thigh, and foot, all where i had complained about the weird tight feeling and weak muscles. He sent me to Chapel Hill to the Rheumatology clinic, he thought i had vasculitis (i was contantly sick with sinus infections.) Rheumatology ruled out anything autoimmune and they took all the blood tests necessary including lead and mercury even aids. They all came back normal. They sent me to neurology for possible MS. The MS "expert" said i had minor upper motor findings and made me get a MRI of my brain and spine and a lyme test. They came back normal. She tried to brush me off, but then referred me to the neuromuscular clinic. The doctor found brisk reflexes in both legs then sent me for EMG. The EMG came back abnormal, positive sharp waves, fascic, fibs, but NCS was normal. Six months later i got another EMG that showed a lot more damage.... So here i am...... They really did not want to believe i was sick because of my age! I do not come across as a sickly person nor do i want to, i find most people are put off by it so i try not to talk about it. I take anxiety pills because i get insomnia from worry and i take Provigil because i fall asleep all day! These are the only meds i take. I go back to Chapel Hill on the 30th and i am going to ask to be sent to the ALS clinic at Duke which is 20miles away from Chapel Hill....... Oh and to answer the twitching questions, they started in my hand and worked their way up and eventually all over my body, especially my thighs. I rarely get muscle spasms now but i do get stiffness and PAIN,,,, i do not understand why they say ALS does not cause pain, i have a dent in my lower back where my muscle has died but i still have to do all the normal lifting i had to do before and let me tell you it hurts! My neck is weak and constantly hurts! The pain is not severe but it is their.... Sorry if i wrote so much, i can type really fast! Even though i have weak hands, i can type a lot. I have a feeling that i will be around with this THING for many years, because it is progressing slowly...... I am hoping that i will be one of those ten percent of people that have a plateau or stop in progression, i hope we all do..... Sammantha