I am writing just the facts. Not my opinion or feeling. Just the facts.
March 2011 Charlie horse in left leg waking me at night
April 2011 strange gait and muscle twitching, fatigue, Brain MRI shows lesions atypical for MS, start using cane for assistance.
June 2011 MS neuro orders more MRI, Spinal Tap, abnormal exam. No spinal lesions, brain lesions atypical, spinal fluid negative.
July 2011 MS doc says no MS and sends e on my way
September 2011 Increasing muscle twitches, un verified weakness, start using rolling walker for assistance. Psychiatrist says not due to mental health issue. Symptoms are real.
October 2011 Neuro in hospital diagnoses MS based on atypical brain lesions and symptoms
Start steroid treatment that help fist three times but then stop
November 2011 Have to stop working due to symptoms, start using forearm crutches for assistance.
December 2011 left foot drop, referred to PT
January 2012 Physical therapist finds weakness in left side, arm and leg, refers to OT and orthopedic guy for AFO for foot drop. Has me trial Walke Aide.
Febraury 2012 Weakness continues. And weakness increasing. Cannot hold up head for long periods of time. PT and neuro order wheelchair.
March 2012 PT and OT verify that weakness is now consistent on both left and right side.
Right foot beginning to drop. Fasiculations in many prts of body. Air hunger begin sporadically in addition to very slight swallowing issues. Very slight. PT and neuro suggest scooter because of arm weakness and difficulty wheeling chair but hold off due to progression and possibility of needing power wheelchair for better support. PT says rogression too fast even for progressive MS.
April 2012. Physical therapist extremely concerned about progression of weakness and fasiculatins. Report this to neuro who orders MRI of brain and EMG. No reults yet.
Physical therapist mentions ALS.
Receive walk aide once approved by medicaid. Find that I cannot use it because since February, muscle fascic have increased and electric stim cause more fascics and imbalance.
Neuro tells PT it may not be MS. I know there are many other neurological diseases but I am here because I just need people who know to guide me.
Here we are. What should I do?
I do not want to have ALS.
I do want to know if it is ALS as I have four young children and am finding small changes or symptoms every few days.
I know that no one here can diagnose, but I am looking for advice based on your experience with ALS.
Have any of you, prior to diagnosis, known in your core that it was ALS?
I will see PT/OT tomorrow.
See neuro on Friday. I am going to ask him straight out to be honest with me and not leave me hanging. I am taking copaxone shots every night and f it is not MS, I don't want to keep taking them.
I apprecite you reading this. If I am completely off the mark, please tell me and I won't return and waste anyone's time.