5 Years of mis-diagnosis, to PPMS
While in the Navy, in the early 80's, I started experiencing intense pain and constriction in the left side and chest. The ship's Dr, thought it might be a heart attack and gave me an EKG, this confirmed that it wasn't a heart attack. My blood pressure was also sky high during these times, probably due to the amount of pain. I was a Nuclear Engineer and after getting carried out of the engine room one day I was taken off the watchbill. I spent the next 5-6 years bouncing around the military health care system. Finally my neurologist at Bethesda gave me a "provisional diagnosis of chronic ms". I carried that with me for quite a while, working at various shore commands. I did manage to talk my self back to sea duty, on a ship I had served on before, for the first Gulf War. I wasn't able to qualify on the Nuke plant, to much fatigue and pain. They shipped me home as soon as we pulled into port after the war was over.
I was then finally given a full diagnosis of PPMS and spent the next few years on shore, limited duty, until I retired in 1997. Thankfully I was fairly well prepared and had already filed with SS and with the VA. Within 4 months I had been rated 100% with both.
I wasn't prepared for the emotional toll of suddenly being totally worthless to society. I was on an emotional roller coaster for several years. I would suddenly lash out with explosive anger. I was such a SOB that I am surprised that my wife stuck it out. I finally got to such a low point that I got some help and finally got on a medication that evened out my emotions. That was back in 1999, my diagnosis was 1985, and I retired with 22 years of service in 1997. The military has been good to me and I always gave it back. Even while I was on limited duty on shore commands I was always given the jobs of 2 or 3 officers. I always was commended for my work and leadership. I also helped out with the NMSS, working as a chapter services volunteer. I also served on the board of directors for them and always pushed for more services and give back to the clients. Being a Navy Chief for many years I tended to push pretty hard. I wasn't invited back for a second term.
I have ppms and in the years since it started I have accumulated quite a few symptoms. The ms hug with it's pain and tightness to the chest is a constant companion. It just varies in intensity, getting worse as the day goes on. The brain fog and cognition are the ones that really scare me the most. My legs are heavy and weak, my arms are feeling the strain of being helpers for my legs, but I can't lose my brain function, not that I would be bothered by the time I do lose it. Just park me in an out of the way corner with something to catch the drool...
How many specialists did you see before finding "The One"?