TImeline and past treatments

April 26, 2007 at 10:48 am

TO clarify what I have been going thru I think I’ll give a timeline.

1995 – I had a pallet of ceiling tile fall on me while working at Home Depot
It has been deemed unrelated and coincidental.
1996 – January I noticed the beginning of drop-foot in left leg, following atrophy to left calf. I filed for workers comp and was deinied and fired when I sued HD
1997-2000 I worked a few jobs to make ends meet while I met wioth various doctors who were very confused and thought it was from the accident.
2000 – Bith legs had atrophy and drop-foot, then left hand followed. Pain started to increase and became daily and unbearable. I was seen by docvtors in Florida – USF Hospital and diagnosed with ALS and told to moive home to NJ with my family.
2000-2002 – Saw Doctors in HUP, Johns Hopkins, Thomas Jefferson. THey agreed I had been misdiagnosed and I had an Ideopathic Neuropathy and started IVIg that (over 12 months overall, Inpatient, Outpatient, Home Treatment) Rituxin infusion that was unsuccessful, Steroids, Neurontin.
2003 – I had enough and gave up and tried to go back to work in a job that I could sit down. Pain was still bad and I was still getting weaker. I still viosited my neurologist in Johns Hopkins but only for check-ups.
2004-present – I have been getting even weaker and my endurance is very low. I cannot sit too long due to nerve pain, stand or walking is bothersome too. I have had all my tests (EMG, Blood, Spinal etc rerun) My right hand is now show a conductio block and is getting weaker. I have spasms in my legs all day and night and the paion is so bad I am filing for SSDI so that I can try to get a better qualitry of life before I go out of my mind. THe doctors are still confused and I am very nervous about my future as a father and husband.

To add to my stress and distress I have recently lost my only two siblings in two seperate tragedies and my parents have divorced after 32 years of marriage. My mother does not recognize that I have a disease and is in denial. She does not offer and help whether emotional or otherwise. My support system has been destroyed and I cannot afford the $40K my IVIg will cost out of pocket for 9 monmths of treament-and it failed to help five years ago.

I’m afraid of getting worse and when or if it will stop. I have never regained strength nor have I had any remission. I have slowly but steadily gotten worse over the past 11 years.

What do I do now???