Thanks Russ. Bad news...he DID and he just ruled out MS and a couple other but HE is suggesting I return to VA for Agent Orange as a likely cause. Had a massive spine tumor "discovered 2.5 years ago when they
opened me up to do 6 spine fusions (all at once). It SO pisses me off that with 6 (count em SIX!) MRI both with and without contrast tests plus several CT with & without Contrast, they could never see a football size tumor? God what CAN they see!
At least nobody (to my face anyway) has told me they thought I was crazy. Probably wouldn't dare since most KNOW me for the hard ass I was when I refused to be told I could never walk again. Took me a year but had 4 more surgeries due to the tumor they found that left more follow up surgeries to close the massive hole now inside me that filled with or grew Seromas. THEN they ended up giving me a Mastectomy of my left breast...so ya see it TOOK awhile to even be able to TRY to walk again
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But they just sort of smiled when I came up with the idea to buy myself a pair of Trekking Poles and refused to quit trying. I honestly came home bloody from falling. Every single day. Sometimes I fell five or six times but would never even let assorted neighbors even help me get back up. I did it to build strength. But after one more year of this I was up to 1-2 miles a day every single day and missed only ONE day walking in 15 months. Then in a single day, I fell and could NOT get back up. Never walked again....
about
4-6 weeks ago the ortho surgeon who did my 6 fusions examined me. Said NOTHING could be done surgically to help me but did a full exam and instantly noticed my left calf was 1.5 inches smaller than the right. And much weaker. HE was 99% convinced I had MS and was now Doctor #5 who thought this. But the new Neuro tested and said 100% NO way possible PERIOD! But think he knew I was a guy who if he called ME crazy would put him on the deck
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So now, just 4-6 weeks later, now my left leg has also shrunk to the same NO calf muscle left at ALL. Scared Hell out of me. It honestly does because everybody has done ALL these tests and labs and NOTHING? Now 3 days ago at my Neur follow up with his nurse practitioner who panicked when reading the labs and saw I had 2 makers positive and wouldn't let my wife let me leave. Had to call the BOSS. He apparently said to let me go and they would call me later but I was K and it was nothing important at all and NO worry. I called my primary doc when I got home and researched Lyme when it looked like a BLUEPRINT of my "journey". It was as if someone wrote a book about
my life. I had NO doubt lyme is what happened. The ultimate irony was I had a shot the very day before I "went down" and couldn't walk for shingles Vaccine . And I woke up sick, stiff neck and had a rash that was the STRANGEST rash I EVER saw and was so scared I was dying, drove to my doctor. He wasn't in but his covering lady doc just here from china examined me and gave me ointment and sent me home saying NOT the shot, just some type of bug bite or who knows....Been all over this world and seen all sorts of rashes in my 68 year life. But NOTHING like whatever I had. Sad part is I can't even remember what type rash it was exactly. Just SO bi it scared me somethin awful and was a MARK, not actually a rash and it seems 90+ percent certain to my wife and myself to be a bullseye? So here I am.
I found this site yesterday and emailed my primary doc this info and asked if he would prescribe for me to try it. He called me last night and agreed but HE wanted to get me an IV dose with a PICC line but I begged off for just the oral to save money and to give me time to research a bit. I started my first pill last night and have a 28 day course of 100 MG pill 2X a day. Now I plan to ask him to help me with new labs the moderator guided me to. If it turns Out I spend a few hundred bucks and find ut it is NOT Lyme? Money WELL spent and that would then lend me to think maybe just maybe my neuro doc IS correct about
Agent Orange or God only knows at this point. All I know is 2 months ago he took away ALL my hope when he said my Polyneuropathy was "progressive and untreatable'....Words that led me discussing the ending of life to STOP the pain and suffering of the past 2.5 years since they destroyed me with those 6 fusions in my spine and the nightmare of pain management for what life I have left. Never took a single pain pill EVER except when wounded 4 times in USMC. The $6K-$9K a year isn't the problem. It is what those drugs DO to your mind and body that does it. Feel no better than the drug addicts I used to arrest. Why should I, I am just ONE of them now...But I am supposed to somehow feel "different" but I don't see much distinction.