self diagnosis because 6 neurologists couldn't
Jan 31, 2016
By: John
Error
I am 61 years old and have had PLS for the last 26. I’ve been in a scooter/power chair since 2003, and after many years of getting weaker, my right arm went out of commission 3 years ago. I still have partial use of my left arm, and my voice/mouth/face muscles still work OK. I worked as a mechanical engineer up until a year and a half ago, and have been retired and loving it since then. I live in central Massachusetts.
After the 1st 10 years and 6 neurologists (including the best at Massachusetts General Hospital and UMass Medical Center) I still didn’t have a diagnosis, so I diagnosed myself and got them to agree to it. When something is putting you in a wheelchair and people ask what’s going on, “I dunno” just doesn’t cut it. So figuring it out was just a matter of pattern recognition. I got all 20 test results and compared them to that to every disease I could find, and it came down to either PLS or HSP. There is no family history of HSP, and I was tested for 8 of the HSP genes (at $1000 each that the insurance paid) which all came back negative, and those 8 account for 80% of all HSP cases. So, most likely it was PLS. I brought all this back to neurologists #3 and 4, and they agreed, so that’s been my DX ever since. Crazy stuff.
1 comment
53 y/o female and 1000 percent same story! Having one last evaluation done this Friday and I'm going to "get them to accept it" as you say. Wondering if you were also told you had conversion disorder or if only women get that label slapped on them? Tired of using walker, cane, massive spasticity, speech issues, etc. only to say "I have no idea what this is." Ridiculous! I believe I have had this for 14 years and things got really bad after a concussion 5 years ago. The last month has been hell!
Commented 3 years ago LisaK 10
