What a fabulous community this is. Yes, I lurked for awhile before I leaped. Now maybe I could be directed to some proper threads for some salient discussion and research. Thank you all, for the wonderful information and thought-provoking dialogue here.
Four years ago I was bodybuilding, and determined to be the most awesome body in my age class. I had worked hard for over a year, when suddenly I had what my primary physician determined was a sinus infection. (inflammation diagnosed by flashlite). 2 months on antibiotics I was still on my face in bed every day with no energy to do anything but short trips to the fridge and bathroom. ENT appt was not available until 3 mo. later, and perfunctory bloodwork showed only low thyroid out of range. What followed was four years of HELL on Levoxyl in doses from 50mg to 125mgs, an un-necessary invasive surgery for a teeny cyst in the maxillary cavity (netted that doc 10K for 15 mins and ruined my life for 4 more months), which brings me to here, considering my limited but frightening knowledge of some family history.
My grandfather had both his legs amputated when I was 11, apparently from diabetes, and did not survive. I have seen 5 Neurologists (both in Alaska and in Washington State) and finally got a "diagnosis" of peripheral neuropathy. No amount of explaining that my feet and ankles turned white with cold, and that capillary refill was absent as soon as I became VERTICAL every morning. Daytimes, only a hot bath or bucket would warm my painful, white, numb, cold feet. These symptoms came on bi-laterally and gradually, un-even and unpredictable. It progressed eventually to my hands as well. The 5th Neuro only agreed to re-test for signal as I insisted my toes would not move, and my calves were extremely tender, I had on fur boots and thick wool socks and my feet were cold SO cold to the touch. She relented. I asked for 180 degree towels out of the autoclave and a re-test in 15 mins, and then the diagnosis was confirmed.
I am not a diabetic. I drank that damn red KoolAid so many times, they keep thinking thats the answer. Its not. I even get the "pins and needles" thing now, after 6 pm. The switch is thrown and I am in all kinds of neuro jolts until such time as a pharmaceutical can get me to sleep.
I've switched primary care Docs but the choice is limited here, with most spending the requisite 7.2 minutes with each patient and no diagnostic skills. Would you like Lyrica? How about Gabapentin? Ad nauseum.
Now I am headed into year 5, and the elapsed time has shown a pattern of immuno-inflammation that has me either: immovable in bed, super sensitive to the air I have to breathe in my sinuses, barely able to whisper. Or, up and doing housework, gardening, hauling wood, shoveling snow but not strenuously working, as in a workout with intent.
This said, my feet are getting worse. It is painful now to walk. Often, my gait in interrupted by the lack of signal, with my left leg having evolved to balance and strength issues. But, after a hot bath, I can wiggle the toes that would not move before, and I can feel my feet in there somewhere.
After scouring hundreds of thyroid threads for years, and multiple bloodtests telling me alternately I am hypo oops now you are hyper, how can I figure out what the heck is going on? How does one go from feeling like crap to feeling like jumping over tall buildings? Am I genetically disposed to some sort of inherited polyneuropathy that is going to reduce me to amputation? Is this some sort of CFS or blood sugar disorder I can be tested for, or am I destined to lay in bed horizontally for the rest of my now unproductive days?
PS. I have left out the parts where I fell off a ladder 16 years ago from 2nd floor window installing by myself,and crushed a few things. Left ulna replaced with 8" of rod, left wrist totally rebuilt, skin grafts, right wrist crush and repair. Crushed and collapsed c-4,c-5,c-6,c-7 by the garden window that followed me down to the ground. Both rotator cuffs diagnosed as needing surgery as well as cervical disc replacement, all of which I self healed and told the orthos to stuff it. At the time of the above description of my "sinus infection" I had just qualified for a fitness competition and had 6 months to refine my physique for same; was swimming 40 mins of slow laps2x weekly and 2X a week gym rat. I remain well muscled at 5'10", 179# and 36"-29"-36" bust/waist/hips, but with an alarming softness of mass due to inordinate months motionless in bed.
Where can I go from here? Its so puzzling!
Four years ago I was bodybuilding, and determined to be the most awesome body in my age class. I had worked hard for over a year, when suddenly I had what my primary physician determined was a sinus infection. (inflammation diagnosed by flashlite). 2 months on antibiotics I was still on my face in bed every day with no energy to do anything but short trips to the fridge and bathroom. ENT appt was not available until 3 mo. later, and perfunctory bloodwork showed only low thyroid out of range. What followed was four years of HELL on Levoxyl in doses from 50mg to 125mgs, an un-necessary invasive surgery for a teeny cyst in the maxillary cavity (netted that doc 10K for 15 mins and ruined my life for 4 more months), which brings me to here, considering my limited but frightening knowledge of some family history.
My grandfather had both his legs amputated when I was 11, apparently from diabetes, and did not survive. I have seen 5 Neurologists (both in Alaska and in Washington State) and finally got a "diagnosis" of peripheral neuropathy. No amount of explaining that my feet and ankles turned white with cold, and that capillary refill was absent as soon as I became VERTICAL every morning. Daytimes, only a hot bath or bucket would warm my painful, white, numb, cold feet. These symptoms came on bi-laterally and gradually, un-even and unpredictable. It progressed eventually to my hands as well. The 5th Neuro only agreed to re-test for signal as I insisted my toes would not move, and my calves were extremely tender, I had on fur boots and thick wool socks and my feet were cold SO cold to the touch. She relented. I asked for 180 degree towels out of the autoclave and a re-test in 15 mins, and then the diagnosis was confirmed.
I am not a diabetic. I drank that damn red KoolAid so many times, they keep thinking thats the answer. Its not. I even get the "pins and needles" thing now, after 6 pm. The switch is thrown and I am in all kinds of neuro jolts until such time as a pharmaceutical can get me to sleep.
I've switched primary care Docs but the choice is limited here, with most spending the requisite 7.2 minutes with each patient and no diagnostic skills. Would you like Lyrica? How about Gabapentin? Ad nauseum.
Now I am headed into year 5, and the elapsed time has shown a pattern of immuno-inflammation that has me either: immovable in bed, super sensitive to the air I have to breathe in my sinuses, barely able to whisper. Or, up and doing housework, gardening, hauling wood, shoveling snow but not strenuously working, as in a workout with intent.
This said, my feet are getting worse. It is painful now to walk. Often, my gait in interrupted by the lack of signal, with my left leg having evolved to balance and strength issues. But, after a hot bath, I can wiggle the toes that would not move before, and I can feel my feet in there somewhere.
After scouring hundreds of thyroid threads for years, and multiple bloodtests telling me alternately I am hypo oops now you are hyper, how can I figure out what the heck is going on? How does one go from feeling like crap to feeling like jumping over tall buildings? Am I genetically disposed to some sort of inherited polyneuropathy that is going to reduce me to amputation? Is this some sort of CFS or blood sugar disorder I can be tested for, or am I destined to lay in bed horizontally for the rest of my now unproductive days?
PS. I have left out the parts where I fell off a ladder 16 years ago from 2nd floor window installing by myself,and crushed a few things. Left ulna replaced with 8" of rod, left wrist totally rebuilt, skin grafts, right wrist crush and repair. Crushed and collapsed c-4,c-5,c-6,c-7 by the garden window that followed me down to the ground. Both rotator cuffs diagnosed as needing surgery as well as cervical disc replacement, all of which I self healed and told the orthos to stuff it. At the time of the above description of my "sinus infection" I had just qualified for a fitness competition and had 6 months to refine my physique for same; was swimming 40 mins of slow laps2x weekly and 2X a week gym rat. I remain well muscled at 5'10", 179# and 36"-29"-36" bust/waist/hips, but with an alarming softness of mass due to inordinate months motionless in bed.
Where can I go from here? Its so puzzling!
